So much for my goal of keeping my blog postings more frequent, maybe that’s a good thing because there hasn’t been much to report throughout September. I’m not too sure how to explain October’s assessment because I’ve got some mixed feelings. For the most part things are status quo but some old MS issues have been creeping up. I did say that my balance and mobility hadn’t improved but over the last few weeks my walking movements and balance seem to have deteriorated slightly. It’s always hard to make an objective observation with these things because the disease is by its very nature full of ups and downs. My feet seem to be dragging more and the speed and level of confidence associated with moving around have been on the decline, or so it seems. In addition to this, my eyes have started to really bother me again. What does any of this mean…who knows!
I still go to the gym and my core and leg muscles have definitely strengthened, my energy levels are still pretty good and I continue to feel quite well. It is still a struggle to get my butt into the gym 3 times a week so I sometimes have to settle for two but I force myself to exercise none the less. I know that it is definitely beneficial and you know what they say…”use it or lose it”! I fundamentally agree with this even though “they” said it. I have an ongoing joke about “they” who think they know everything when typically they don’t know crap and who are they anyway?
I have also started taking Tysabri again after being off of MS drugs for over two years. I’m not all that comfortable with it but after lengthy consideration I made an informed and educated decision to begin the treatment again. Many people believe that after they have had the angioplasty procedure that MS drugs are no longer necessary but I don’t fully agree with that idea. I still believe that Zamboni’s discovery is the most important breakthrough in the treatment of MS that has EVER been made but at the risk of sounding like a neurologist or health bureaucrat, the results are not in. Truthfully I need to see proven clinical results over time but am I sorry about having the treatment, NOT FOR A MINUTE!
The fact is that when I’ve been on MS meds I have not had an attack and every time I’ve stopped the drugs I’ve had an attack. That’s not all good news because I’ve always been on a path of continuous progression but at this point I really want to avoid any type of acute exacerbation. After all Dr. Zamboni never suggested that patients should stop taking their medications, in fact I think he encouraged people to continue with their treatments. My decision to return to Tysabri was not an easy one given the risks because the drug can lead to a potentially deadly brain infection known as PML. The scary part is that PML cases seem to be on the rise with Biogen reporting 55 cases as of June with 11 deaths! This is probably due to the fact that the risks increase the longer someone has been on the drug and that there are many more people taking it as each year passes. The positive results of Tysabri still remain and I do have personal knowledge of many people who have experienced significant improvement in their quality of life. Again as with everything else, the benefits to those of us with secondary progressive or worse are unknown and unproven, hmmm…same old thing!
So I had my first infusion last week and as I sat back in the easy chair looking up at the small clear bag containing the drug slowly draining down the clear intravenous tube directly into my vein and throughout my blood stream I couldn’t help but cringe at the hypocrisy of our medical system. They don’t know, they meaning doctors, researchers or the pharmaceutical company, what this solution now being pumped into my body will do for the progression of my disease or if it might even kill me! Since we first learned of the angioplasty procedure, the outcry from neurologists, MS Societies and health authorities regarding the risks of “the Liberation treatment” have been yelled out across the world. What a joke!!! Out of the now thousands of procedures that have been done, outside of the first two adverse incidents that were reported very early on at Stanford, I have not heard of one significant problem. Granted I haven’t been nearly as involved in the online forums and MS websites as I was earlier but if any serious events or side effects have occurred I’m positive that the anti CCSVI forces would have been all over that news! I still view it as an outrage that MS sufferers are denied this basic treatment.
At least the wheels of change are turning in our view of CCSVI and the efforts to study it are slowly coming to fruition. Some organization is slowly coming about to track people who have had the procedure, where they have gone and the results but there is a long way to go. Saskatchewan announced yesterday that the province will fund $5 Million to research CCSVI. They will use a similar format as the MS Society used to call for research proposals and establish an advisory board to determine the trials that are best suited to prove the validity as a treatment for MS. I’m not really sure what this means but I am very confident that Saskatchewan’s approach will be substantially more meaningful than that of the MS Society. There is much research going on around the world, I just hope it is coordinated to actually be useful and prove or disprove something about the Liberation procedure.
It is coming up to four months since my procedure and my goal was to be tested again within six months of treatment to check if my veins are still free from blockage. Well I’m waiting to be notified of my appointment date for a Doppler ultrasound but I’m told it should be late November. The Sunridge Diagnostic centre will be performing the test and apparently they’ve been working hard to understand the proper protocols and techniques for specifically diagnosing CCSVI. The centre originally had a poor record of false negatives but I believe they have now had proper training and are more reliable. I didn’t even have to fight over getting tested, I just got a requisition from my doctor and Alberta Health will pay for the test. Maybe I shouldn’t be speaking of this so upfront, there may still be spooky dudes out there watching for this kind of thing attempting to stall CCSVI progress. I still can’t believe this kind of devious underhanded crap happened here and in the U.S. At any rate I will be tested and hopefully the clinic knows what it’s doing now. I don’t even know what I’ll do if they find blockages again but I need to take a look. I guess I’ll just deal with things as they come, like always. Regardless of what happens with either the CCSVI or Tysabri, I’m very glad that my hope and faith are in the hands of God and not doctors, scientists or government!
I have always been a self advocate for the decisions I make about treating MS. I’m not the type of person that can sit back and wait for something to happen be that with the course of the disease or treatment alternatives. Since I was first diagnosed I promised myself that I would fight MS with everything I have and I’m proud to have stayed true to that promise. That is why I’ve been on crazy diets, strict vitamin and herbal remedies. That is why I sourced out stem cell transplants and raised the money to go to China for treatment. That is why I was so diligent in my effort to be treated for CCSVI. That is why I’ve decided to subject myself to the potential risk of a drug that may or may not help me and possibly kill me (it is a calculated risk that is about 1 in 1000). That is why I go to the gym and stay as fit as I can. I do all of this to stay as strong as I can and battle against multiple sclerosis because I promised myself that I would, and if not for my sake then for my children. My daily existence is a struggle as simplistic as that may sound. The effort required to do two loads of laundry and make dinner can consume an entire days worth of energy but that’s just how it is, I fight through it and overcome. I pray that God gives me the strength to maintain this fight but I pray even more relentlessly for His healing hand to touch me to end this fight.
LC
Wednesday, October 20, 2010
Monday, August 30, 2010
STABILIZED AND FEELING GOOD!!
Well it's been quite some time since my last blog but a busy summer will do that. Many people have been waiting for an update on my condition post angioplasty and I get asked the question so much that it’s become somewhat tiresome. I suppose that is to be expected and people are genuinely interested in my results but there really hasn’t been much to report. The initial improvements I had with my eye pain and the diminished buzzing sensations have maintained so I’m very happy about that. In addition to this, I am now able to sleep much better! Before my treatment I usually woke up by 6 a.m. no matter what I tried but I could rarely sleep in which was frustrating and not good for me! Even if I stayed up past midnight or one in the morning, my automatic wake up still kicked in and I could not usually fall back asleep. Since returning in July I can now sleep until 9 o’clock or later which is allowing me to get a much better rest which is likely the reason that I don’t feel so tired and wiped out by mid afternoon. I have been feeling more energy allowing me to accomplish much more in a typical day and muster up the motivation to get my butt moving. For example, I have recently joined Gold’s gym and begun a workout routine three days a week. In the previous 6 months or even the last year, there was absolutely no energy to consider working out and so I haven’t really done anything for over a year. As it is with almost anyone, finding the motivation to drag myself into the gym three times a week is still a challenge but for the most part I’m doing it! Even though I’ve got a long way to go to regain the strength I had a year ago, I can already see some improvement. I used to work out with my own equipment in my basement but since moving I don’t have the equipment set up and I do find it more beneficial going to an actual gym. First of all I now get more of a cardio workout because I ride the bike which I never had access to before. I also never worked my legs because I didn’t have any equipment for leg exercises but I now do leg press, extensions, hamstring curls etc. and now realize how beneficial strengthening my leg muscles will be. The couches at my house all have the lazy boy type of foot rests that kick out and I can’t remember when I could last close them up without pushing it back in with my arms. Lately I can actually bend my knees and close it up the way it was meant to work, like a normal able bodied person. This may not sound like a big deal but to me it is a noticeable improvement and a motivator to continue exercising!
Unfortunately I have not experienced remarkable improvements as some have reported but then again I didn’t really expect to. My mobility has not really gotten any better but it has definitely not gotten worse and this is key! Time will tell if disease progression has been halted but the angioplasty appears to have been successful, I am feeling better and can honestly say that my quality of life has improved. Any improvements that I’ve had will still be considered anecdotal but that’s fine with me. There is plenty of evidence that is not anecdotal and can not be attributed to the placebo effect. When someone who previously did not have the balance, strength, energy or coordination to walk unassisted can now throw the cane away and walk or even jog and appear completely normal, the placebo effect is no longer a reasonable explanation! I belong to CCSVICalgary.org which is a local organization formed to advocate for testing and treatment and is a great vehicle for building exposure and lobbying the government and health authorities. This last Saturday we held a 10 km run and fundraising barbeque. One of our members Liz Simenik has received national news coverage on her amazing improvements post angioplasty and completed the 10 km run which would not have been conceivable only a few months ago. I participated in the run but of course had to use my scooter; the event was covered by Global News and was a great success. There are many more examples of remarkable angioplasty results within the organization such as Ginger Macqueen who’s CCSVI story has been followed by CBC. She went to Poland for her treatment and CBC was at our last meeting doing a follow up to her story which should air on the National in the next week or so. They also interviewed me so I’ll have another television experience but who knows what they’ll include in the story but the point is that our cause is gaining traction and public awareness. There is still a long fight ahead of us but it’s something I’m happy to spend my time on!
My other passion that has consumed most of my summer is my children. I’ve been fortunate to have had them at my house most of the summer and I can’t believe school is about to start, time goes by so fast! It’s now been over two months since my angioplasty so my six month goal to be retested will come up on me fast. It will be interesting to see what kind of fight I’ll encounter to be retested and confirm that my blood is still flowing properly. Even though I had to leave the country for my procedure, I believe it is my right and Alberta Health’s responsibility to provide follow up for a medical procedure required to treat significant jugular vein stenosis. The procedure was documented as required to relieve symptoms related to venous congestion and had nothing to do with multiple sclerosis. I can feel the fight brewing already which is why the work we are doing through CCSVI Calgary as well as many similar organizations is so important.
On another note, I had another MRI in August which identified multiple white matter lesions again but the dominant enhancing lesion on my left thalamus has diminished. Although a small amount of residual enhancement remains present, no additional abnormal enhancing lesions were identified. Simply put, the progression has stabilized and this is very good news! Whether any of this can be attributed to proper blood flow from my brain over the last two months will remain unknown but as long as the disease is not progressing, I’m happy! Now time will tell whether the progression has been halted and if I can experience additional improvements. I will continue to exercise strengthening my muscles, especially focusing again on my core stabilizing muscles and hopefully I’ll continue to improve.
Now that school has started I should have more time to pursue writing so hopefully my blogs will become more frequent again. As things progress in the world of CCSVI, I’ll attempt to keep my blog up to date and informative about new developments.
LC
Unfortunately I have not experienced remarkable improvements as some have reported but then again I didn’t really expect to. My mobility has not really gotten any better but it has definitely not gotten worse and this is key! Time will tell if disease progression has been halted but the angioplasty appears to have been successful, I am feeling better and can honestly say that my quality of life has improved. Any improvements that I’ve had will still be considered anecdotal but that’s fine with me. There is plenty of evidence that is not anecdotal and can not be attributed to the placebo effect. When someone who previously did not have the balance, strength, energy or coordination to walk unassisted can now throw the cane away and walk or even jog and appear completely normal, the placebo effect is no longer a reasonable explanation! I belong to CCSVICalgary.org which is a local organization formed to advocate for testing and treatment and is a great vehicle for building exposure and lobbying the government and health authorities. This last Saturday we held a 10 km run and fundraising barbeque. One of our members Liz Simenik has received national news coverage on her amazing improvements post angioplasty and completed the 10 km run which would not have been conceivable only a few months ago. I participated in the run but of course had to use my scooter; the event was covered by Global News and was a great success. There are many more examples of remarkable angioplasty results within the organization such as Ginger Macqueen who’s CCSVI story has been followed by CBC. She went to Poland for her treatment and CBC was at our last meeting doing a follow up to her story which should air on the National in the next week or so. They also interviewed me so I’ll have another television experience but who knows what they’ll include in the story but the point is that our cause is gaining traction and public awareness. There is still a long fight ahead of us but it’s something I’m happy to spend my time on!
My other passion that has consumed most of my summer is my children. I’ve been fortunate to have had them at my house most of the summer and I can’t believe school is about to start, time goes by so fast! It’s now been over two months since my angioplasty so my six month goal to be retested will come up on me fast. It will be interesting to see what kind of fight I’ll encounter to be retested and confirm that my blood is still flowing properly. Even though I had to leave the country for my procedure, I believe it is my right and Alberta Health’s responsibility to provide follow up for a medical procedure required to treat significant jugular vein stenosis. The procedure was documented as required to relieve symptoms related to venous congestion and had nothing to do with multiple sclerosis. I can feel the fight brewing already which is why the work we are doing through CCSVI Calgary as well as many similar organizations is so important.
On another note, I had another MRI in August which identified multiple white matter lesions again but the dominant enhancing lesion on my left thalamus has diminished. Although a small amount of residual enhancement remains present, no additional abnormal enhancing lesions were identified. Simply put, the progression has stabilized and this is very good news! Whether any of this can be attributed to proper blood flow from my brain over the last two months will remain unknown but as long as the disease is not progressing, I’m happy! Now time will tell whether the progression has been halted and if I can experience additional improvements. I will continue to exercise strengthening my muscles, especially focusing again on my core stabilizing muscles and hopefully I’ll continue to improve.
Now that school has started I should have more time to pursue writing so hopefully my blogs will become more frequent again. As things progress in the world of CCSVI, I’ll attempt to keep my blog up to date and informative about new developments.
LC
Thursday, July 8, 2010
ANOTHER AMAZING JOURNEY!!
June 24th was my day of Liberation and everything went well despite a few hiccups. It was a very long day getting to Alexandria; I didn’t see darkness for two days! It started off leaving Calgary June 21st at 1 PM on a 9 hour flight to Frankfurt, then a 4 hour stop over before carrying on with another 4 hour flight getting me into Cairo at 3:30 PM June 22nd. A driver was at the airport with my name on a sign waiting to pick us up but the only English he had to offer up was my name on his sign! After collecting my scooter, damaged in transit but still operational, we loaded it into his van and hit the road for a 4 hour drive to Alexandria finally getting into our hotel at about 8 PM. A very long and tiring trip ending with a very well deserved sleep and yes…darkness!
My ultrasound was scheduled for the following day at 4:30 so still feeling the effects of our long journey we laid down for an afternoon nap at about 2:30. I had spoken with the doctor earlier on who told me to have the taxi driver call him at about 4:00 to give him directions to his office. When I awoke from my afternoon slumber I was startled and panicked to see the time was 4:30! I was a little frantic about the thought of travelling half way around the world only to sleep through the first critical step of my treatment! I hurried downstairs to call Dr. Sameh but it took nearly half an hour to reach him before he could explain to the driver where to go. So off we went into the heart of a very busy downtown with a cab driver that spoke no English hoping he understood where to go. We arrived at the supposed location of the ultrasound clinic but nobody knew who we were or who Dr. Sameh was. After several minutes of confusion and language obstacles our only alternative was to return to the hotel and phone the doctor again. It was probably close to 6:00 by now and my fears of missing the ultrasound appointment were growing! It took close to half an hour again to reach the doctor before he could clarify his directions to the driver and off we went again. We arrived back at the same building but this time the driver turned down a side alley to an entrance that did not appear anything like an ultrasound clinic but we were met by someone from the clinic who took us up to the second floor to a small indiscriminate waiting room, nothing resembling a western clinic. Soon we were lead into the examination room and I was relieved to find some very high tech equipment and Dr. Sameh waiting for me. Relieved to finally be in the proper location I sat up on the examination table as the doctor began to spread the clear gel substance to my neck and start rubbing the ultrasound mechanism up and down my neck. It took less than one minute for him to find venous blockages and he said “severe stenosis in my right jugular and my left was about 60% blocked”. Strange as it may sound, I was extremely relieved and happy to hear that I had venous blockages that were very abnormal. It was a leap of faith coming so far without knowing if I even had CCSVI. He showed us on the monitor where the blockages were and how the blood flow was refluxing back to my brain.
Relieved to have not missed the test we returned to our hotel for a late dinner before I would have to begin my fast for the procedure the following day. I was to be at the hospital by 2 PM the next day to begin pre-op procedures. It was a small private hospital, extremely nice and we were greeted with fabulous hospitality and kindness. It brought me back to my days in China where we felt like celebrities being the only blonde white people. Lorelei was served a tri colored slush beverage that you would expect in a fancy lounge and some hazelnut cookies while I got nothing! The nurses and staff treated her like a queen while I was sent to my private room where my pre-op procedures began. They drew some blood and inserted an IV tube into my wrist and much to my dismay brought out the shaving utensils for an unpleasant flashback to China. The one big difference is that being in a devout Muslim country, there was not a female nurse to be found and so sheepishly I turned my head while my pubic hair was shaved, definitely not a highlight to remember. Next I was taken in an elevator downstairs to the operating area again very reminiscent of China. Before being taken into the OR a hospital administrator entered with my stack of American Express travelers cheques in his hand telling me they could not accept them for payment. I was pissed because before coming I asked if I could pay by credit card and was told no, cash or travelers cheques only. Not wanting to carry $7,000 in cash I opted for the travelers cheques which cost me additional money and provided no benefit for air miles or cash back on my card. He was actually talking about not doing the procedure and I didn’t even bring my Visa card which is the only card they accepted. Fortunately Lorelei had enough room on her card to save the day and the operation was soon under way.
The main doctor performing the procedure was Dr. Tariq Sinan from Kuwait, another interventional radiologist and an anaesthesiologist also from Kuwait as well as Dr. Saleh. An intravenous was started, a local anaesthetic administered to my right thigh and the typical covering placed over all other areas not involved in the surgery. A cold solution, disinfectant I suppose was squirted all over my leg and then things began. A funky space ship like circular device moved around over my body and head which prevented me from seeing anything but allowed the images of my veins and blood flow to be visible on the surgical monitor. The doctor warned me of a poke and the operation started with the insertion of the catheter into a vein of my upper right thigh. I could not see anything that was going on but inside I could feel things happening. It was like I could feel or hear inside my head the contrast die being injected into my veins, a very strange sensation! As the overhead disc moved around above my chest and head I couldn’t tell what was happening but I knew when the angioplasty balloon was being inflated. It was like I could feel pressure inside and a weird popping noise in my head. The anaesthesiologist asked if I felt any pain which I replied yes, and he injected something to ease the pain but told me that he didn’t want to give me too much. I wasn’t sure what was going on inside of me but I knew he was pulling things in and out of my vein, changing balloon sizes and moving the catheter around to different areas. I was not even aware of how long the procedure was taking but I was aware of different doctors coming in and out of the operating room. I think Dr. Tariq was sounding a little frustrated by how long things were taking. He muttered to himself at one point, “why are you giving me this much trouble?!” He said my left jugular and chest cleared up beautifully but he was having trouble with my right jugular. The question “do you feel any pain” was being asked repeatedly and the answer was yes every time but I maintained that I was okay as the procedure continued. I did hear Dr. Tariq ask for the stent to be prepared and then he was going to give it one final attempt with a 20mm balloon. I could hear the relief and excitement in his voice as this final attempt was successful. The problem with my right jugular was a valve that would not stay open which is why he would need to use a stent if this final attempt didn’t work. What happened was that with the 20mm balloon he was able to essentially destroy the valve so it remained open. I’m sure that my sense of relief was even greater than Dr. Tariq’s. His first comment to Lorelei after leaving the operating room was, “thank you for bringing him such a great distance to be my most difficult patient yet!”
Things wrapped up pretty fast from that point as I was placed onto a new stretcher and wheeled into the recovery room. There were no stitches involved; only a puncture wound in my right thigh that did produce quite a bit of blood but about 5 minutes of constant pressure stopped the bleeding. That was it, blocked veins fixed! The only side effects that I experienced were tenderness at the insertion point and substantial bruising but nothing limiting or serious. As it was getting quite late I was taken back to my room for an overnight stay in the hospital and released the following morning. I returned to the hospital the next day for a follow up ultrasound that confirmed everything was flowing properly. Everything was so easy; I’m actually disgusted that I had to travel across the globe to receive the treatment. I have not received my final report or CD with the Doppler ultrasound images or the images from the surgery but they are on the way. After two full days of performing angioplasty, they apparently treated 20 patients, all the doctors were on a plane back to Kuwait Saturday morning which is why I did not receive any of the procedure documentation before I left. I do have to commend the doctors, they were all excellent and becoming some of the most experienced with the procedure in the world.
Even though I have now been treated I will still be joining others lobbying the government and health authorities to allow this procedure. Eventually I would like to be reimbursed for my expenses, I won’t hold my breath but I won’t give up easy! I have not experienced any miraculous improvements post procedure but there is still a lot of time to see positive changes. I have noticed that my eyes don’t bother me with pain anymore and the constant buzzing vibrating sensations that I used to experience 24/7 have been drastically reduced. I’m feeling very good but I must be patient to see further improvements. Ultimately if I can stop any further progression I will be extremely happy and consider the treatment a success, time will tell.
Since I had travelled so far, I had to see some sights so come Saturday morning we were on our way back to Cairo. We had four days to explore the pyramids, sphinx, a cruise on the Nile, the Egyptian Museum and explore the living conditions and typical life of the Egyptian people. Everything was extremely interesting but due to the heat (40° Celsius +) I couldn’t get to everything I wanted but it was an amazing experience! Our next destination was Frankfurt which I loved, full of history and beautiful landscapes! We had three full days to take in our German experience and we saw a lot! It was very nice to get back to an advanced, modern western society however not as advanced as I’d hoped. The temperature was 37° plus and felt even hotter than Egypt but air conditioning was not common at all especially in hotels. We were in a very nice hotel, a great central location for getting around but hot as hell with no AC even though it was a four star. Nights were very uncomfortable to say the least! Despite the heat we were able to take in quite a bit, I finally had the freedom of mobility again because everything was wheel chair accessible and using my scooter was so much easier for sight seeing! There was very little wheelchair access in Egypt so I was very happy to get my ride back!
That was it, journey complete and we were on our way back home. I had very little quality recuperation time after my surgery so I was very tired once we got home. Now that I’m rested I’m feeling good and even energized enough to attempt an exercise regiment again. I am so happy to have had the opportunity to be treated; now I’ll just have to wait and see what happens. On another positive note, travelling and spending almost every minute together for two weeks was a breeze with my new gal! We didn’t have one argument or disagreement, our compatibility factor is very good! I need to give a huge shout out to Lorelei for sharing this journey with me, you are awesome babe!
LC
My ultrasound was scheduled for the following day at 4:30 so still feeling the effects of our long journey we laid down for an afternoon nap at about 2:30. I had spoken with the doctor earlier on who told me to have the taxi driver call him at about 4:00 to give him directions to his office. When I awoke from my afternoon slumber I was startled and panicked to see the time was 4:30! I was a little frantic about the thought of travelling half way around the world only to sleep through the first critical step of my treatment! I hurried downstairs to call Dr. Sameh but it took nearly half an hour to reach him before he could explain to the driver where to go. So off we went into the heart of a very busy downtown with a cab driver that spoke no English hoping he understood where to go. We arrived at the supposed location of the ultrasound clinic but nobody knew who we were or who Dr. Sameh was. After several minutes of confusion and language obstacles our only alternative was to return to the hotel and phone the doctor again. It was probably close to 6:00 by now and my fears of missing the ultrasound appointment were growing! It took close to half an hour again to reach the doctor before he could clarify his directions to the driver and off we went again. We arrived back at the same building but this time the driver turned down a side alley to an entrance that did not appear anything like an ultrasound clinic but we were met by someone from the clinic who took us up to the second floor to a small indiscriminate waiting room, nothing resembling a western clinic. Soon we were lead into the examination room and I was relieved to find some very high tech equipment and Dr. Sameh waiting for me. Relieved to finally be in the proper location I sat up on the examination table as the doctor began to spread the clear gel substance to my neck and start rubbing the ultrasound mechanism up and down my neck. It took less than one minute for him to find venous blockages and he said “severe stenosis in my right jugular and my left was about 60% blocked”. Strange as it may sound, I was extremely relieved and happy to hear that I had venous blockages that were very abnormal. It was a leap of faith coming so far without knowing if I even had CCSVI. He showed us on the monitor where the blockages were and how the blood flow was refluxing back to my brain.
Relieved to have not missed the test we returned to our hotel for a late dinner before I would have to begin my fast for the procedure the following day. I was to be at the hospital by 2 PM the next day to begin pre-op procedures. It was a small private hospital, extremely nice and we were greeted with fabulous hospitality and kindness. It brought me back to my days in China where we felt like celebrities being the only blonde white people. Lorelei was served a tri colored slush beverage that you would expect in a fancy lounge and some hazelnut cookies while I got nothing! The nurses and staff treated her like a queen while I was sent to my private room where my pre-op procedures began. They drew some blood and inserted an IV tube into my wrist and much to my dismay brought out the shaving utensils for an unpleasant flashback to China. The one big difference is that being in a devout Muslim country, there was not a female nurse to be found and so sheepishly I turned my head while my pubic hair was shaved, definitely not a highlight to remember. Next I was taken in an elevator downstairs to the operating area again very reminiscent of China. Before being taken into the OR a hospital administrator entered with my stack of American Express travelers cheques in his hand telling me they could not accept them for payment. I was pissed because before coming I asked if I could pay by credit card and was told no, cash or travelers cheques only. Not wanting to carry $7,000 in cash I opted for the travelers cheques which cost me additional money and provided no benefit for air miles or cash back on my card. He was actually talking about not doing the procedure and I didn’t even bring my Visa card which is the only card they accepted. Fortunately Lorelei had enough room on her card to save the day and the operation was soon under way.
The main doctor performing the procedure was Dr. Tariq Sinan from Kuwait, another interventional radiologist and an anaesthesiologist also from Kuwait as well as Dr. Saleh. An intravenous was started, a local anaesthetic administered to my right thigh and the typical covering placed over all other areas not involved in the surgery. A cold solution, disinfectant I suppose was squirted all over my leg and then things began. A funky space ship like circular device moved around over my body and head which prevented me from seeing anything but allowed the images of my veins and blood flow to be visible on the surgical monitor. The doctor warned me of a poke and the operation started with the insertion of the catheter into a vein of my upper right thigh. I could not see anything that was going on but inside I could feel things happening. It was like I could feel or hear inside my head the contrast die being injected into my veins, a very strange sensation! As the overhead disc moved around above my chest and head I couldn’t tell what was happening but I knew when the angioplasty balloon was being inflated. It was like I could feel pressure inside and a weird popping noise in my head. The anaesthesiologist asked if I felt any pain which I replied yes, and he injected something to ease the pain but told me that he didn’t want to give me too much. I wasn’t sure what was going on inside of me but I knew he was pulling things in and out of my vein, changing balloon sizes and moving the catheter around to different areas. I was not even aware of how long the procedure was taking but I was aware of different doctors coming in and out of the operating room. I think Dr. Tariq was sounding a little frustrated by how long things were taking. He muttered to himself at one point, “why are you giving me this much trouble?!” He said my left jugular and chest cleared up beautifully but he was having trouble with my right jugular. The question “do you feel any pain” was being asked repeatedly and the answer was yes every time but I maintained that I was okay as the procedure continued. I did hear Dr. Tariq ask for the stent to be prepared and then he was going to give it one final attempt with a 20mm balloon. I could hear the relief and excitement in his voice as this final attempt was successful. The problem with my right jugular was a valve that would not stay open which is why he would need to use a stent if this final attempt didn’t work. What happened was that with the 20mm balloon he was able to essentially destroy the valve so it remained open. I’m sure that my sense of relief was even greater than Dr. Tariq’s. His first comment to Lorelei after leaving the operating room was, “thank you for bringing him such a great distance to be my most difficult patient yet!”
Things wrapped up pretty fast from that point as I was placed onto a new stretcher and wheeled into the recovery room. There were no stitches involved; only a puncture wound in my right thigh that did produce quite a bit of blood but about 5 minutes of constant pressure stopped the bleeding. That was it, blocked veins fixed! The only side effects that I experienced were tenderness at the insertion point and substantial bruising but nothing limiting or serious. As it was getting quite late I was taken back to my room for an overnight stay in the hospital and released the following morning. I returned to the hospital the next day for a follow up ultrasound that confirmed everything was flowing properly. Everything was so easy; I’m actually disgusted that I had to travel across the globe to receive the treatment. I have not received my final report or CD with the Doppler ultrasound images or the images from the surgery but they are on the way. After two full days of performing angioplasty, they apparently treated 20 patients, all the doctors were on a plane back to Kuwait Saturday morning which is why I did not receive any of the procedure documentation before I left. I do have to commend the doctors, they were all excellent and becoming some of the most experienced with the procedure in the world.
Even though I have now been treated I will still be joining others lobbying the government and health authorities to allow this procedure. Eventually I would like to be reimbursed for my expenses, I won’t hold my breath but I won’t give up easy! I have not experienced any miraculous improvements post procedure but there is still a lot of time to see positive changes. I have noticed that my eyes don’t bother me with pain anymore and the constant buzzing vibrating sensations that I used to experience 24/7 have been drastically reduced. I’m feeling very good but I must be patient to see further improvements. Ultimately if I can stop any further progression I will be extremely happy and consider the treatment a success, time will tell.
Since I had travelled so far, I had to see some sights so come Saturday morning we were on our way back to Cairo. We had four days to explore the pyramids, sphinx, a cruise on the Nile, the Egyptian Museum and explore the living conditions and typical life of the Egyptian people. Everything was extremely interesting but due to the heat (40° Celsius +) I couldn’t get to everything I wanted but it was an amazing experience! Our next destination was Frankfurt which I loved, full of history and beautiful landscapes! We had three full days to take in our German experience and we saw a lot! It was very nice to get back to an advanced, modern western society however not as advanced as I’d hoped. The temperature was 37° plus and felt even hotter than Egypt but air conditioning was not common at all especially in hotels. We were in a very nice hotel, a great central location for getting around but hot as hell with no AC even though it was a four star. Nights were very uncomfortable to say the least! Despite the heat we were able to take in quite a bit, I finally had the freedom of mobility again because everything was wheel chair accessible and using my scooter was so much easier for sight seeing! There was very little wheelchair access in Egypt so I was very happy to get my ride back!
That was it, journey complete and we were on our way back home. I had very little quality recuperation time after my surgery so I was very tired once we got home. Now that I’m rested I’m feeling good and even energized enough to attempt an exercise regiment again. I am so happy to have had the opportunity to be treated; now I’ll just have to wait and see what happens. On another positive note, travelling and spending almost every minute together for two weeks was a breeze with my new gal! We didn’t have one argument or disagreement, our compatibility factor is very good! I need to give a huge shout out to Lorelei for sharing this journey with me, you are awesome babe!
LC
Monday, June 14, 2010
WHAT A WHIRLWIND!!
It’s been about 2 months since my last blog, but what a busy time it’s been! I suppose I’ll begin with a medical update. I’m very displeased with my condition; I’ve seen a decline in the past month that is frightening. It is just so much harder to move around, I’m slower and more uncoordinated than I’ve ever been while not in the midst of an attack. I’m still getting around it’s just more difficult and tiring. The good news is that the right side of my body is feeling much better in terms of the tingling and sense of touch! My biggest problem is still physical mobility and this is worsening, it’s very scary at times or on certain days. This just reinforces the fact that the disease is active and causing damage right now!
I would have been liberated by now had Dr. Sclafani continued with his treatment and this fact gets me so angry. I’ve learned a ton in the last month about the various forces attempting to undermine CCSVI and the things that are going on sicken me. The CCSVI Facebook site is a phenomenal source of information but like everything else you must investigate claims and not accept everything that’s posted as fact but it is a super tool for disseminating information. People have been asked not to mention or talk about any doctors performing the liberation procedure because there are TROLLS that comb the site trying to find doctors to report and get shut down. Things are beyond conspiracy theory now and have evolved into flat out discrimination against people with MS! Our provincial health authorities have essentially banned anything that has MS attached to it. My doctor could send me to have my jugulars tested if there was a vascular issue but as soon as the lab sees MS, they are not allowed to test. No shit! Technicians are not being trained on CCSVI procedures anyway so it’s kind of a mute point. Bottom line is that I and everyone else are being abandoned by our medical system and government! I’m hoping to try and sue the government or file a complaint with the human rights tribunal for what I see as unethical, immoral and discriminatory treatment against people suffering the devastating effects of multiple sclerosis. I won’t accomplish this feat on my own but with others who are organizing to protest. I belong to CCSVI Calgary and there are protest groups like this organizing all over the country. You have probably seen some of this in the news, if we can continue with the pressure and solidarity I know we’ll make a difference. Hopefully we can bring about change to our twisted system and find some justice!
Because I’m so worried about what has been happening to me, I wasn’t giving up on getting treated. After learning that New York was postponed I began my search again. Mexico still wasn’t ready and still isn’t, and other facilities like Poland had very lengthy waiting lists. I was able to reach Dr. Tariq Sinan by email after learning that he was performing the procedure. To my surprise he was very prompt at getting back to me and actually opted to phone me! He says that more information can be discussed in a five minute conversation than over twenty or thirty emails going back and forth. Dr. Sinan is the doctor primarily responsible for the Kuwaiti Health Authority agreeing to test and treat all Kuwait citizens with MS. Dr. Sinan decided to treat foreign patients outside Kuwait since the government only allows citizens to take part. About once a month Dr. Sinan brings three other doctors with him to either Bahrain or Egypt to liberate 6 to 8 patients. Dr. Sinan is an interventional radiologist and he works with another radiologist, and I believe a neurologist and thoracic surgeon. At any rate he has a serious team of experience and competency to work with. After I checked him out and was satisfied that he was the real deal, on April 26th I emailed him back to be included on his treatment list. I was very pleased to learn that the cost will be less than I was going to pay in New York!
Amazingly he replied right away to say he had one spot left for the May 26th trip. This would not have given me enough time to prepare but he also said he was planning another date for June 3rd. He told me that I didn’t have to pay for the treatment until it was done so I figured why not sign up. The catch was that he wouldn’t be able to confirm the date until May 15th! That would give no time to prepare but I went ahead anyway. As the date got closer it became more infeasible for me and it wasn’t until May 19th that he confirmed the next available date was June 23rd. I began making plans for that date but in a follow up email he said I should not have booked anything until June 10th when he could confirm that the materials were available! That would give me less than 2 weeks to organize getting half way around the world!! I avoided blogging about this trip until I was sure everything was confirmed, I’ve had enough disappointment with delays and cancellations and I didn’t want anything to jinx me this time. So come June 10th I finally got confirmation and away I went booking flights and getting visa applications in. JUST CRAZY…but one week from today I’ll be on my way to Egypt! June 23rd will be a day for testing and my procedure is booked for June 24th at 6 PM!! What a journey to finally getting a liberation confirmed and an even larger journey to come as I make my way to Alexandria, Egypt.
That was just part of the craziness that has happened in my life since my last blog. Unfortunately the most significant event was the passing of my father on May 11th. This has been an extremely trying and difficult time but my family was all together and there for one another. It was tough under the circumstances to deal with a possible trip to the other side of the world to be liberated however the timing all worked out. I know my dad would want me to have this treatment above anything else and I know he’ll be smiling down on me from heaven on the 24th.
Another chaotic event was moving!! Yes as of the end of May I moved to a new house and I love it! I still live with the same roommate; we just changed houses and towns. I now live only 12 km from my children instead of 75 km and a 45 minute drive! This fact alone makes me so much happier with the bonus that I’m now in a bungalow! No more stairs to struggle up and down several times a day, now only when I’m doing laundry. We now live on an acreage, I mean hundreds of acres! There are very few houses on the entire property so we don’t really have a neighbour. We do have access to an amazing yard and the land owner has Shetland ponies, horses, about 75 head of cattle, a couple of donkeys and 12 peacocks that roam around free. There is a fishing hole that he stocks with trout that doubles as an ice rink in the winter. I’m so fortunate to have such a beautiful place that is totally awesome for our children.
One of the happiest events that occurred was that I finally met a woman that I'm attracted to that is happy to love me for who I am, MS included. I have waited and prayed for this for such a long time. Even though I’ve only classified her as my girlfriend for about a month, everything has been so smooth and we seem to be very compatible together. I guess I’ll find out soon enough because I’m bringing her to Egypt as my caregiver. Well more as my girlfriend but everyone freaked out when I said that I’d travel on my own for this treatment so a “caregiver” was required. I know I’ll be very glad and thankful to have someone along to help out, but I still would have gone as stubborn and determined as I am. To travel that far and not see any of this amazing country would be a crime so we will be away for 2 weeks! I’ll probably be free to go from my treatment on the 26th and then we’ll tour around before spending a few days in our stopover, Frankfurt. It will be quite the journey. Unfortunately things have changed a little from my original liberation journey in New York, the offer to cover my travel expenses is now off the table but I’ll be okay, somehow the Lord will work it all out.
One more amazing event that happened this last month, I finally finished writing my book! It’s been just over two years since I started it and I’ve been on and off of it several times but it is now complete. Well kind of, I’ll have to read over it a few times and make some changes I’m sure but hopefully I’ll have lots of energy when I return and will be able to finish it up fast. Then I’ll give it to a friend of mine for editing, and then… Hopefully someone will want to publish it! Maybe I’ll sell some online copies; maybe this will make up for the shortfall on my trip or fund another stem cell transplant in the future. Who knows but at least I finished it, one accomplishment I feel good about!
So all in all a pretty crazy time, especially for me whose life is usually so docile and slow! I won’t bring my laptop with me so no blogs while I’m gone but I am bringing my video cam and if I can figure it out maybe I’ll attempt a You Tube posting. Talk to you all again after LIBERATION!
LC
I would have been liberated by now had Dr. Sclafani continued with his treatment and this fact gets me so angry. I’ve learned a ton in the last month about the various forces attempting to undermine CCSVI and the things that are going on sicken me. The CCSVI Facebook site is a phenomenal source of information but like everything else you must investigate claims and not accept everything that’s posted as fact but it is a super tool for disseminating information. People have been asked not to mention or talk about any doctors performing the liberation procedure because there are TROLLS that comb the site trying to find doctors to report and get shut down. Things are beyond conspiracy theory now and have evolved into flat out discrimination against people with MS! Our provincial health authorities have essentially banned anything that has MS attached to it. My doctor could send me to have my jugulars tested if there was a vascular issue but as soon as the lab sees MS, they are not allowed to test. No shit! Technicians are not being trained on CCSVI procedures anyway so it’s kind of a mute point. Bottom line is that I and everyone else are being abandoned by our medical system and government! I’m hoping to try and sue the government or file a complaint with the human rights tribunal for what I see as unethical, immoral and discriminatory treatment against people suffering the devastating effects of multiple sclerosis. I won’t accomplish this feat on my own but with others who are organizing to protest. I belong to CCSVI Calgary and there are protest groups like this organizing all over the country. You have probably seen some of this in the news, if we can continue with the pressure and solidarity I know we’ll make a difference. Hopefully we can bring about change to our twisted system and find some justice!
Because I’m so worried about what has been happening to me, I wasn’t giving up on getting treated. After learning that New York was postponed I began my search again. Mexico still wasn’t ready and still isn’t, and other facilities like Poland had very lengthy waiting lists. I was able to reach Dr. Tariq Sinan by email after learning that he was performing the procedure. To my surprise he was very prompt at getting back to me and actually opted to phone me! He says that more information can be discussed in a five minute conversation than over twenty or thirty emails going back and forth. Dr. Sinan is the doctor primarily responsible for the Kuwaiti Health Authority agreeing to test and treat all Kuwait citizens with MS. Dr. Sinan decided to treat foreign patients outside Kuwait since the government only allows citizens to take part. About once a month Dr. Sinan brings three other doctors with him to either Bahrain or Egypt to liberate 6 to 8 patients. Dr. Sinan is an interventional radiologist and he works with another radiologist, and I believe a neurologist and thoracic surgeon. At any rate he has a serious team of experience and competency to work with. After I checked him out and was satisfied that he was the real deal, on April 26th I emailed him back to be included on his treatment list. I was very pleased to learn that the cost will be less than I was going to pay in New York!
Amazingly he replied right away to say he had one spot left for the May 26th trip. This would not have given me enough time to prepare but he also said he was planning another date for June 3rd. He told me that I didn’t have to pay for the treatment until it was done so I figured why not sign up. The catch was that he wouldn’t be able to confirm the date until May 15th! That would give no time to prepare but I went ahead anyway. As the date got closer it became more infeasible for me and it wasn’t until May 19th that he confirmed the next available date was June 23rd. I began making plans for that date but in a follow up email he said I should not have booked anything until June 10th when he could confirm that the materials were available! That would give me less than 2 weeks to organize getting half way around the world!! I avoided blogging about this trip until I was sure everything was confirmed, I’ve had enough disappointment with delays and cancellations and I didn’t want anything to jinx me this time. So come June 10th I finally got confirmation and away I went booking flights and getting visa applications in. JUST CRAZY…but one week from today I’ll be on my way to Egypt! June 23rd will be a day for testing and my procedure is booked for June 24th at 6 PM!! What a journey to finally getting a liberation confirmed and an even larger journey to come as I make my way to Alexandria, Egypt.
That was just part of the craziness that has happened in my life since my last blog. Unfortunately the most significant event was the passing of my father on May 11th. This has been an extremely trying and difficult time but my family was all together and there for one another. It was tough under the circumstances to deal with a possible trip to the other side of the world to be liberated however the timing all worked out. I know my dad would want me to have this treatment above anything else and I know he’ll be smiling down on me from heaven on the 24th.
Another chaotic event was moving!! Yes as of the end of May I moved to a new house and I love it! I still live with the same roommate; we just changed houses and towns. I now live only 12 km from my children instead of 75 km and a 45 minute drive! This fact alone makes me so much happier with the bonus that I’m now in a bungalow! No more stairs to struggle up and down several times a day, now only when I’m doing laundry. We now live on an acreage, I mean hundreds of acres! There are very few houses on the entire property so we don’t really have a neighbour. We do have access to an amazing yard and the land owner has Shetland ponies, horses, about 75 head of cattle, a couple of donkeys and 12 peacocks that roam around free. There is a fishing hole that he stocks with trout that doubles as an ice rink in the winter. I’m so fortunate to have such a beautiful place that is totally awesome for our children.
One of the happiest events that occurred was that I finally met a woman that I'm attracted to that is happy to love me for who I am, MS included. I have waited and prayed for this for such a long time. Even though I’ve only classified her as my girlfriend for about a month, everything has been so smooth and we seem to be very compatible together. I guess I’ll find out soon enough because I’m bringing her to Egypt as my caregiver. Well more as my girlfriend but everyone freaked out when I said that I’d travel on my own for this treatment so a “caregiver” was required. I know I’ll be very glad and thankful to have someone along to help out, but I still would have gone as stubborn and determined as I am. To travel that far and not see any of this amazing country would be a crime so we will be away for 2 weeks! I’ll probably be free to go from my treatment on the 26th and then we’ll tour around before spending a few days in our stopover, Frankfurt. It will be quite the journey. Unfortunately things have changed a little from my original liberation journey in New York, the offer to cover my travel expenses is now off the table but I’ll be okay, somehow the Lord will work it all out.
One more amazing event that happened this last month, I finally finished writing my book! It’s been just over two years since I started it and I’ve been on and off of it several times but it is now complete. Well kind of, I’ll have to read over it a few times and make some changes I’m sure but hopefully I’ll have lots of energy when I return and will be able to finish it up fast. Then I’ll give it to a friend of mine for editing, and then… Hopefully someone will want to publish it! Maybe I’ll sell some online copies; maybe this will make up for the shortfall on my trip or fund another stem cell transplant in the future. Who knows but at least I finished it, one accomplishment I feel good about!
So all in all a pretty crazy time, especially for me whose life is usually so docile and slow! I won’t bring my laptop with me so no blogs while I’m gone but I am bringing my video cam and if I can figure it out maybe I’ll attempt a You Tube posting. Talk to you all again after LIBERATION!
LC
Tuesday, April 13, 2010
WELL THIS REALLY SUCKS!!
It only took days to bring my mood from one of jubilation to complete frustration caused by the forces that are committed to thwart any progress for the treatment of CCSVI. It was April 2nd I believe when I received a call from Holly who is the coordinator for the CCSVI program at Kings County Hospital informing me that my scheduled date to begin testing on June 7th was no longer a confirmed date. She wasn’t able elaborate on any details other than to say the program has been delayed so appointments will have to be adjusted. She told me that Dr. Sclafani would be sending an email to explain the situation but in the meantime, don’t book a flight. This really took the wind out of my sails, I was so close and now I’m left in a state of complete uncertainty. It took a week for Dr. Salvatore Sclafani, he goes by Sal which is how I’ll refer to him, to send out the email explaining things.
The exact circumstances that I was always worried might derail the procedure had indeed come to light. Just as in Dr. Dake’s case at Stanford, the hospital has stepped in to halt all Liberation procedures! The positive part is that no one has used the term cancelled, just postponed. Apparently this all started with an article written in the Wall Street Journal outlining the serious adverse effects that have occurred at Stanford. The result of this article gave the hospital and its owner the idea that they were vulnerable if another adverse event occurred so they felt it necessary to postpone all Liberations until a formal research proposal has been approved. Out of nowhere another treatment alternative has been stopped based on bogus information! First of all why does a financial paper like the WSJ have an interest in reporting on a medical procedure and CCSVI? Based on the conclusions of one reporter who is relying on and propagating misinformation, the procedure has been demonized. I’m floored that the truth regarding the Liberation procedure is not being explained in the media or by MS organizations. The adverse effects being referred to are the slipping of a stent into the heart of one patient that required heart surgery to correct and the unfortunate death of a woman that was not a result of the procedure but the blood thinner medication taken post treatment that caused a brain hemorrhage if I’m not mistaken. Yes these events are very unfortunate but in no way should they lead to the negative stigma now being cast over the procedure. I haven’t read the following week’s column but apparently this same reporter wrote an article singing the praises of an MS drug, this coming from a financial paper…hmmm, I wonder if the big pharm companies have any influence???
The use of stents in the Liberation treatment is very uncommon and as far as I know the only cause of complications resulting from Liberation however the media isn’t interested in reporting on this. Balloon angioplasty is the current treatment standard throughout the world until there is more research on the use of stents. I’m unsure of how many angioplasty procedures have been performed for CCSVI but I have not heard of any adverse effects and we are for sure into the hundreds and perhaps over a thousand surgeries! The simple fact is that the angioplasty procedure is very safe and all the fear mongering about the high risk and safety of the process is completely BUNK! Fortunately there are doctors like Sal who are committed to the cause and genuinely interested in helping patients. He must submit a proposal for a research project and have it approved by the Investigational Review Board of the State University of New York and by the HHC's (the parent company) review board. Dr. Sal is hoping to have an expedited review but realistically this will take 2 or 3 months but he still hopes to be operational in June. I don’t think it’s possible to be as disappointed as I am or anyone else that was on his list for treatment but I know that he genuinely shares our feelings of frustration and distress. In fact he is so committed to CCSVI that he has delegated many of his responsibilities as Chairman of Radiology so that he can focus more of his time on ramping up to perform more Liberation treatments than he had originally planned by the end of the year. He has personally committed to everyone that was on his treatment list that we will be treated as soon as he can resume and commented that we are at the front of the line. I’m not sure how long this line is or if the program will change after being designated as a research project so I’ll just have to wait for more news. Sal really is an awesome doctor, he follows people’s comments on web chat rooms like TIMS (This Is MS) and actually answers questions, posts comments and updates. I can’t hide my disappointment but I am still very encouraged and positive about getting Liberated, I just hope its in time to prevent further damage that I know has taken place in the last few months.
W-5 did another CCSVI report on Saturday, if your interested you can view it on their website w5.ctv.ca, it was another very good story and unbiased in the reporting. Again the views of Dr. Freedman as an expert in MS were expressed and again he made himself sound like a “jack ass”. I think his closed minded approach to MS and overinflated ego has reduced his credibility to zilch! Some of his statements are so hypocritical and make no sense when viewed from a compassionate and pragmatic medical viewpoint. My jaw dropped when he said “why would you fix something that may not have anything to do with the disease?” Where’s the logic in that, if a venous abnormality is discovered and you know that blood is not draining, why wouldn’t you want to fix this?! I’ve had huge differences with Freedman in the past but his recent comments reinforce his treatment biases and arrogance and I know for a fact that many patients have dropped him as their neurologist, as would I in a heartbeat!
We are now seeing positive results from the angioplasty procedure from around the world, so much so that the “anecdotal evidence” is overwhelming. I can’t accept Freedman’s comments that patient improvements could be attributed to the placebo effect as rational thinking. There’s not enough coincidence in the world to explain the positive results flooding in daily from across the globe. The fervour created around CCSVI has been amazing and woken up the world yet some stubborn, ignorant and unyielding members of the medical and scientific community remain asleep clinging to the traditional and unproven theories and treatments for multiple sclerosis. Testing and treating CCSVI is not the answer to MS but definitely an important part of the puzzle. Until we can put the rest of the pieces together we need to capitalize on what we have discovered and provide any hope and relief possible to those of us suffering with the debilitating effects of MS everyday. I can tell you that things are worsening for me if not everyday then by the week and I may not recover from the additional damage being done. Time is of the essence and all players with a vested interest be that patients, doctors, researchers, insurance companies and governments need to accept this fact and act with urgency and compassion. The government of Kuwait has set the example by committing to testing and treating all 6000 citizens with MS! The government of Alberta should stand up and take notice, the societal cost of this disease is enormous and anything we can do to stop it or at least slow it down would be a very wise investment!
LC
The exact circumstances that I was always worried might derail the procedure had indeed come to light. Just as in Dr. Dake’s case at Stanford, the hospital has stepped in to halt all Liberation procedures! The positive part is that no one has used the term cancelled, just postponed. Apparently this all started with an article written in the Wall Street Journal outlining the serious adverse effects that have occurred at Stanford. The result of this article gave the hospital and its owner the idea that they were vulnerable if another adverse event occurred so they felt it necessary to postpone all Liberations until a formal research proposal has been approved. Out of nowhere another treatment alternative has been stopped based on bogus information! First of all why does a financial paper like the WSJ have an interest in reporting on a medical procedure and CCSVI? Based on the conclusions of one reporter who is relying on and propagating misinformation, the procedure has been demonized. I’m floored that the truth regarding the Liberation procedure is not being explained in the media or by MS organizations. The adverse effects being referred to are the slipping of a stent into the heart of one patient that required heart surgery to correct and the unfortunate death of a woman that was not a result of the procedure but the blood thinner medication taken post treatment that caused a brain hemorrhage if I’m not mistaken. Yes these events are very unfortunate but in no way should they lead to the negative stigma now being cast over the procedure. I haven’t read the following week’s column but apparently this same reporter wrote an article singing the praises of an MS drug, this coming from a financial paper…hmmm, I wonder if the big pharm companies have any influence???
The use of stents in the Liberation treatment is very uncommon and as far as I know the only cause of complications resulting from Liberation however the media isn’t interested in reporting on this. Balloon angioplasty is the current treatment standard throughout the world until there is more research on the use of stents. I’m unsure of how many angioplasty procedures have been performed for CCSVI but I have not heard of any adverse effects and we are for sure into the hundreds and perhaps over a thousand surgeries! The simple fact is that the angioplasty procedure is very safe and all the fear mongering about the high risk and safety of the process is completely BUNK! Fortunately there are doctors like Sal who are committed to the cause and genuinely interested in helping patients. He must submit a proposal for a research project and have it approved by the Investigational Review Board of the State University of New York and by the HHC's (the parent company) review board. Dr. Sal is hoping to have an expedited review but realistically this will take 2 or 3 months but he still hopes to be operational in June. I don’t think it’s possible to be as disappointed as I am or anyone else that was on his list for treatment but I know that he genuinely shares our feelings of frustration and distress. In fact he is so committed to CCSVI that he has delegated many of his responsibilities as Chairman of Radiology so that he can focus more of his time on ramping up to perform more Liberation treatments than he had originally planned by the end of the year. He has personally committed to everyone that was on his treatment list that we will be treated as soon as he can resume and commented that we are at the front of the line. I’m not sure how long this line is or if the program will change after being designated as a research project so I’ll just have to wait for more news. Sal really is an awesome doctor, he follows people’s comments on web chat rooms like TIMS (This Is MS) and actually answers questions, posts comments and updates. I can’t hide my disappointment but I am still very encouraged and positive about getting Liberated, I just hope its in time to prevent further damage that I know has taken place in the last few months.
W-5 did another CCSVI report on Saturday, if your interested you can view it on their website w5.ctv.ca, it was another very good story and unbiased in the reporting. Again the views of Dr. Freedman as an expert in MS were expressed and again he made himself sound like a “jack ass”. I think his closed minded approach to MS and overinflated ego has reduced his credibility to zilch! Some of his statements are so hypocritical and make no sense when viewed from a compassionate and pragmatic medical viewpoint. My jaw dropped when he said “why would you fix something that may not have anything to do with the disease?” Where’s the logic in that, if a venous abnormality is discovered and you know that blood is not draining, why wouldn’t you want to fix this?! I’ve had huge differences with Freedman in the past but his recent comments reinforce his treatment biases and arrogance and I know for a fact that many patients have dropped him as their neurologist, as would I in a heartbeat!
We are now seeing positive results from the angioplasty procedure from around the world, so much so that the “anecdotal evidence” is overwhelming. I can’t accept Freedman’s comments that patient improvements could be attributed to the placebo effect as rational thinking. There’s not enough coincidence in the world to explain the positive results flooding in daily from across the globe. The fervour created around CCSVI has been amazing and woken up the world yet some stubborn, ignorant and unyielding members of the medical and scientific community remain asleep clinging to the traditional and unproven theories and treatments for multiple sclerosis. Testing and treating CCSVI is not the answer to MS but definitely an important part of the puzzle. Until we can put the rest of the pieces together we need to capitalize on what we have discovered and provide any hope and relief possible to those of us suffering with the debilitating effects of MS everyday. I can tell you that things are worsening for me if not everyday then by the week and I may not recover from the additional damage being done. Time is of the essence and all players with a vested interest be that patients, doctors, researchers, insurance companies and governments need to accept this fact and act with urgency and compassion. The government of Kuwait has set the example by committing to testing and treating all 6000 citizens with MS! The government of Alberta should stand up and take notice, the societal cost of this disease is enormous and anything we can do to stop it or at least slow it down would be a very wise investment!
LC
Friday, March 26, 2010
PROGRESSION BUT NEW HOPE!
It’s been about three weeks since my last blog and there’s been a lot happening. In terms of my health, not so good, I still haven’t stabilized. My walking has really become awkward and deliberate, I still try to walk a little but it is painfully slow. Since this started about three months ago, I have to classify the sustained decline in my functional ability as progression rather than a relapse that I would recover from. It’s more difficult to get around than I can remember in a very long time. If I compare myself to one year ago, it’s night and day. Now that I’ve got the benefit of hindsight, I had great improvement post stem cell treatment. This has changed because the disease has become active again and I can feel things going on now!
It’s actually more than my walking difficulty and sort of weird because I haven’t really experienced these symptoms in the past. One of them being my vertigo issues that I’ve described. I guess I’ve become a little used to it now but I have never experienced a prolonged occurrence like this. Sure on the odd occasion everyone will get a dizzy spell but they go on throughout the entire day for me. I know to stabilize myself before getting up to stand and simple precautions like this have kept me from many falls but again add to the forces that slow me down. The MS clinic thought that there might be some underlying causes to my dizzy spells aside from the MS like low blood pressure. I saw my doctor last week and my BP was 120/80 in both standing and laying down positions, exactly where a completely normal healthy individual should be. If you disregard the disease, I have always been very healthy but unfortunately, it’s impossible to disregard multiple sclerosis.
A new symptom entirely has crept up to cause great displeasure at times, it’s not painful but like many other symptoms annoying and extremely uncomfortable. Strangely enough it has to do with my toes, they are sort of cramping up but only in feeling because they appear normal. If you can imagine a hawk’s talons as he holds onto something he’s swooped down to grab, his grip would be very powerful. This is the feeling I experience primarily in my left foot, as if my toes are curled up and clenching onto something for dear life but they’re not curled up at all! It’s another one of those mind over matter things that I have to try to ignore or else let it drive me crazy. I can try to massage my foot and toes for relief but it is something new that I can’t get rid of by popping a pill. I thought I had experienced some strange sensations before but not like this.
Unfortunately I’m still dealing with all of the same problems that have plagued me forever like my eyes, the constant buzzing and vibrating feelings in my lower body and the severe spasticity in my legs. Actually the increased spasticity in my legs is the largest contributing factor to my walking difficulties. I’ve reverted back to the straight legged walk and many of the improper movements that I learned to correct through my physical therapy. Walking up stairs improperly swinging my hip or leg to the side has almost become the norm again and picking up my feet as I walk is very difficult. I really have to concentrate when I’m outside because this is how I can trip on a small stone. Inside is a different story, I let my feet drag because they slide along the carpet or hardwood floors easy but oddly enough this can cause me to fall too. For instance, if something was spilt on the floor and not cleaned up properly a sticky film will remain. As I come along with my feet sliding and run into the sticky patch, my forward motion is stopped and you guessed it, down I go or very close to.
So because I can feel this progression happening right now, the urgency I feel to have the liberation procedure has grown. There are now several foreign clinics that offer testing and treatment for CCSVI like India, Poland, Bulgaria and the one I have been talking about in Mexico. I would want to check out these programs and doctors very thoroughly but fortunately I was just accepted into the U.S. clinic I spoke about in my last blog. When my MS blogger buddy forwarded the contact info to me I phoned the office right away to get myself on the treatment list. I wasn’t sure that I’d move forward with this treatment facility but figured it can’t hurt to register my name. Well I got a call last Friday from the doctor’s patient coordinator to inform me that I was on the treatment list and they needed to schedule me in or take me off the list. Problem was that I had to confirm my spot in line by Monday or I would lose my place. She was very kind and apologetic about having to pressure me into such an important decision but if I didn’t take the spot there was someone right behind me waiting for it. When I first learned about this doctor I was aware that he was performing the procedure on the quiet which is why I didn’t release any information. Shortly thereafter the doctor’s name was revealed over the internet and almost immediately his office was inundated with phone calls and emails causing a complete halt to new bookings. Because I had secured a spot by calling early I was still offered the treatment but had to make a decision by Tuesday morning. There was a lot to consider because I knew I wouldn’t have any insurance coverage and the additional expense of flying to New York and staying in a hotel for a week would be costly. I was also waiting to hear more information on the treatment facility in Mexico before deciding where to go. It wasn’t until Monday evening that I received enough information on the Mexican clinic to make a decision and in the end I chose to stay with the New York doctor. First thing Tuesday morning I called his office to inform them I was going ahead with the treatment, she asked me when I would like to book the procedure to which I answered “your first available opening”! This happened to be the week of June 7th so I told her to sign me up and now I’m booked to undergo the liberation procedure! All of the details have yet to be worked out but at least I know I have a confirmed date.
I first stated my objective of being tested and treated for CCSVI within six months in my February 4th blog so I’m extremely pleased that I will have achieved that goal in only four months! Praise God, I cannot believe it’s happening so fast. So many pieces of this puzzle came together without effort and planning on my part. The fact that I received the contact info without even asking (thanks Lew), I called to get my name on the list just in time and was able to schedule the treatment whereas many others were put off, the good Lord in His perfect timing has worked out a financial blessing that will enable me to afford the procedure, and although not confirmed yet even my travelling expenses will be provided for! It’s amazing how this is all coming together and to see how God has been working in my life assembling the pieces of the puzzle in His perfect way without causing me any stress or angst. I truly feel blessed!
As was the case with my stem cell transplants, I’m going into this experience without any lofty expectations other than stopping the progression. I hope to see some improvements like a decrease in fatigue or an abatement of my vertigo and other problems that have been troubling me. Notable health improvements have been experienced post procedure but no one can claim they know what to expect. Again, this is in God’s hands but my prayer is that the treatment will successfully halt the progression that I have experienced recently. I will include more details about my treatment as I learn more and get closer to the date. I have followed the experience of two MS bloggers that have undergone the treatment by this New York doctor and while it is too early to assess any results, both men are completely happy that they had the procedure. I have heard nothing but praise for the doctor and his experience and accolades are very impressive. I consider myself extremely fortunate to be in line for the liberation procedure and realize that many MSers will be watching my experience closely but feeling very envious. The good news is that testing and treatment for CCSVI is really gaining traction albeit not very fast in Canada. Of course we all want more research confirming an association with MS but for many of us time is critical and I think that in the short term as the benefits of treatment are documented, the medical establishment will have to open its eyes and get out of the proverbial box. The story really is dynamic and evolving quickly which is why I believe our hope is solid and stronger than ever!
LC
It’s actually more than my walking difficulty and sort of weird because I haven’t really experienced these symptoms in the past. One of them being my vertigo issues that I’ve described. I guess I’ve become a little used to it now but I have never experienced a prolonged occurrence like this. Sure on the odd occasion everyone will get a dizzy spell but they go on throughout the entire day for me. I know to stabilize myself before getting up to stand and simple precautions like this have kept me from many falls but again add to the forces that slow me down. The MS clinic thought that there might be some underlying causes to my dizzy spells aside from the MS like low blood pressure. I saw my doctor last week and my BP was 120/80 in both standing and laying down positions, exactly where a completely normal healthy individual should be. If you disregard the disease, I have always been very healthy but unfortunately, it’s impossible to disregard multiple sclerosis.
A new symptom entirely has crept up to cause great displeasure at times, it’s not painful but like many other symptoms annoying and extremely uncomfortable. Strangely enough it has to do with my toes, they are sort of cramping up but only in feeling because they appear normal. If you can imagine a hawk’s talons as he holds onto something he’s swooped down to grab, his grip would be very powerful. This is the feeling I experience primarily in my left foot, as if my toes are curled up and clenching onto something for dear life but they’re not curled up at all! It’s another one of those mind over matter things that I have to try to ignore or else let it drive me crazy. I can try to massage my foot and toes for relief but it is something new that I can’t get rid of by popping a pill. I thought I had experienced some strange sensations before but not like this.
Unfortunately I’m still dealing with all of the same problems that have plagued me forever like my eyes, the constant buzzing and vibrating feelings in my lower body and the severe spasticity in my legs. Actually the increased spasticity in my legs is the largest contributing factor to my walking difficulties. I’ve reverted back to the straight legged walk and many of the improper movements that I learned to correct through my physical therapy. Walking up stairs improperly swinging my hip or leg to the side has almost become the norm again and picking up my feet as I walk is very difficult. I really have to concentrate when I’m outside because this is how I can trip on a small stone. Inside is a different story, I let my feet drag because they slide along the carpet or hardwood floors easy but oddly enough this can cause me to fall too. For instance, if something was spilt on the floor and not cleaned up properly a sticky film will remain. As I come along with my feet sliding and run into the sticky patch, my forward motion is stopped and you guessed it, down I go or very close to.
So because I can feel this progression happening right now, the urgency I feel to have the liberation procedure has grown. There are now several foreign clinics that offer testing and treatment for CCSVI like India, Poland, Bulgaria and the one I have been talking about in Mexico. I would want to check out these programs and doctors very thoroughly but fortunately I was just accepted into the U.S. clinic I spoke about in my last blog. When my MS blogger buddy forwarded the contact info to me I phoned the office right away to get myself on the treatment list. I wasn’t sure that I’d move forward with this treatment facility but figured it can’t hurt to register my name. Well I got a call last Friday from the doctor’s patient coordinator to inform me that I was on the treatment list and they needed to schedule me in or take me off the list. Problem was that I had to confirm my spot in line by Monday or I would lose my place. She was very kind and apologetic about having to pressure me into such an important decision but if I didn’t take the spot there was someone right behind me waiting for it. When I first learned about this doctor I was aware that he was performing the procedure on the quiet which is why I didn’t release any information. Shortly thereafter the doctor’s name was revealed over the internet and almost immediately his office was inundated with phone calls and emails causing a complete halt to new bookings. Because I had secured a spot by calling early I was still offered the treatment but had to make a decision by Tuesday morning. There was a lot to consider because I knew I wouldn’t have any insurance coverage and the additional expense of flying to New York and staying in a hotel for a week would be costly. I was also waiting to hear more information on the treatment facility in Mexico before deciding where to go. It wasn’t until Monday evening that I received enough information on the Mexican clinic to make a decision and in the end I chose to stay with the New York doctor. First thing Tuesday morning I called his office to inform them I was going ahead with the treatment, she asked me when I would like to book the procedure to which I answered “your first available opening”! This happened to be the week of June 7th so I told her to sign me up and now I’m booked to undergo the liberation procedure! All of the details have yet to be worked out but at least I know I have a confirmed date.
I first stated my objective of being tested and treated for CCSVI within six months in my February 4th blog so I’m extremely pleased that I will have achieved that goal in only four months! Praise God, I cannot believe it’s happening so fast. So many pieces of this puzzle came together without effort and planning on my part. The fact that I received the contact info without even asking (thanks Lew), I called to get my name on the list just in time and was able to schedule the treatment whereas many others were put off, the good Lord in His perfect timing has worked out a financial blessing that will enable me to afford the procedure, and although not confirmed yet even my travelling expenses will be provided for! It’s amazing how this is all coming together and to see how God has been working in my life assembling the pieces of the puzzle in His perfect way without causing me any stress or angst. I truly feel blessed!
As was the case with my stem cell transplants, I’m going into this experience without any lofty expectations other than stopping the progression. I hope to see some improvements like a decrease in fatigue or an abatement of my vertigo and other problems that have been troubling me. Notable health improvements have been experienced post procedure but no one can claim they know what to expect. Again, this is in God’s hands but my prayer is that the treatment will successfully halt the progression that I have experienced recently. I will include more details about my treatment as I learn more and get closer to the date. I have followed the experience of two MS bloggers that have undergone the treatment by this New York doctor and while it is too early to assess any results, both men are completely happy that they had the procedure. I have heard nothing but praise for the doctor and his experience and accolades are very impressive. I consider myself extremely fortunate to be in line for the liberation procedure and realize that many MSers will be watching my experience closely but feeling very envious. The good news is that testing and treatment for CCSVI is really gaining traction albeit not very fast in Canada. Of course we all want more research confirming an association with MS but for many of us time is critical and I think that in the short term as the benefits of treatment are documented, the medical establishment will have to open its eyes and get out of the proverbial box. The story really is dynamic and evolving quickly which is why I believe our hope is solid and stronger than ever!
LC
Tuesday, March 2, 2010
BEAT UP...BUT HAPPY!
Picking up speed but still on the BUNNY HILL
My volunteer's heart is not in her throat yet!
My dedicated CADS volunteers
Click on the picture to blow up my beat up face
My ski season ended last Friday, what an evening as you can kind of see from the pictures. I had my kids again for the weekend so I asked a friend to watch them Friday evening while I went skiing. She has two boys the same age as my children so it’s a very good babysitting exchange. We arrived in Airdrie around 4:30 pm and my friend had ordered pizza for dinner. An unfortunate incident occurred at the end of my first slice, as I bit into the crust I heard that gut wrenching cracking sound from within my mouth. My friend immediately turned to me with a look of anguish in her face; she asked if my tooth was all right because that did not sound good. Initially I thought I had just bitten into something that shouldn’t have been in that crust and thought everything was okay. I spit out the small amount of food remaining in my mouth and my tongue could not feel any damage so I began my second piece. After a few seconds my tongue was back to feeling around and once I had the food cleared away I discovered that my tooth was indeed damaged. The inside edge of my tooth felt very rough and uncomfortable, I began digging around in the tiny bit of chewed up food I had spit out. This really grossed out my friend but I needed to find what it was that I bit into. Turns out I couldn’t see anything hard that would have caused this but I did discover a white piece of porcelain shaped like a shark tooth that just happened to be the inside layer of my tooth that had chipped right off! I believe this was a crown I had done in the last year so hopefully my dentist will cover the repair. I was lucky enough that I didn’t expose a root and there is not a lot of pain so I can continue to eat albeit very tentatively. I cannot get back into the dental office that did the work until March 11th so hopefully it will not become a bigger problem by then.
This was not a positive note to start my last night of skiing but I was off to COP anyway. After all, it was the last lesson of the season and I wanted to have a good showing. One of my instructors was enquiring about how I felt after last week and a couple of good falls that I took. My shoulders were a little sore and early on in the week, I had a headache for two days that had started instantly after smacking my head in one of my wipeouts. It wasn’t serious and did not pose any difficulty throughout the week so I was ready to go although Cheryl one of my volunteers was concerned about a possible concussion. I assured her that I was fine so we headed out to get strapped in and up the chair. I had explained some of the problems I faced the last time out like total fatigue setting in on my last run and increased balance issues due to dizzy spells. Cheryl thought I should do a practice run before going to the top but I declined and my other instructor agreed. Cheryl is very sweet and concerned with my safety; she has a real motherly instinct and worry mechanism that kicks in. She tells me that her heart jumps up into her throat every time she sees me picking up too much speed!
I was actually concerned myself because my dizzy spells had increased throughout the last week so I wasn’t sure how well I’d be able to handle the sit-ski. Things went relatively smooth on my first run down; it was my second run that things got a little sketchy. I started from the top in great form but about a third of the way down I took a tumble, actually quite an impressive wipeout! I was also skiing with another volunteer on his sit-ski who analyzes my runs, his comment to me was that my first eight or so turns got a 10 but my crash only earned me a 6. I thought it should have been better because I did a complete face plant! After getting my ski upright again, I assumed that I just had snow and ice dripping from my face but it turned out to be blood! After Cheryl tenderly tried to wipe the blood from my face, I was off again until about three quarters of the way down when I bit it again. Ironically, I did another face plant but this time I was awarded a 9! I have had many falls but this was the first night that I actually did a face plant! It didn’t seem as bad as my first fall but I was happy to increase my artistic score. When I got to the bottom there were several CADS volunteers that came by to talk about the run and have a little chuckle. The resulting appearance of my bloodied face looked much worse than the actual fall and like I said, I couldn’t even tell that I was bleeding. I’ve always considered myself to be a rough and tumble type of guy so these wipeouts did not faze me and after one of the volunteers patched me up with a bandage on my nose, away we went back up the chair. My next run did not work out very well, I was hitting the fatigue factor and my head was spinning a little. About half way down my instructor decided to strap the tether onto the back of my sit-ski to get me the rest of the way down safely. I actually did not mind the bashed up face, it was my final night of skiing and would leave me with some lasting memories, and I still had a blast!
Now onto what’s been going on with my body. Life with MS has become increasingly difficult lately but I continue to push onward, like skiing for example. I was concerned about the effectiveness of my last course of high dose steroids because I was not having a severe attack. As it turns out the prednisone had a very limited positive result because my symptoms have not really subsided and I have experienced increased and new problems. As I wrote in my last blog, I did see an increase in energy and my legs did seem to get stronger but these improvements were not significant enough to outweigh the negative impact that this attack is still having. Perhaps the steroids prevented an extreme escalation in my symptoms but no one can say for sure. At any rate, I finished the prescription, I’m still mobile, and functioning well, which is a positive. I am still finding my coordination difficult and my walking is slower and more awkward than it’s been in a long while but I am hoping things will level off. The more troubling problem is with my vertigo and this is somewhat new for me. I am getting dizzy spells more frequently than I ever have and it’s a little weird. Not that I haven’t experienced this before but they are more pronounced and difficult to overcome. When I get up from lying down it hits me instantly and sometimes lying down will bring it on. I haven’t experienced this situation since my late teen years when I was discovering alcohol and the infamous bed spins! Sometimes looking up at the ceiling or sky will trigger the effect and simply standing up quickly or turning my head to look behind me will bring it on. Unfortunately there isn’t anything I can do to stop this, I just have to be careful and cope with the situation.
I am now quite concerned because I seem to be far from stabilizing. Fortunately skiing did end last week because I’m not that confident that I could continue as certain symptoms seem to worsen, the most problematic being my vertigo issue. My dizzy spells are very frequent and my walking ability has really deteriorated. I am used to being very slow but slow has now taken on a new meaning. For example, yesterday I was at Shoppers Drug Mart to pick up some vitamin E oil to apply to my facial abrasions now that scabs are forming, the difficulty I had walking was painfully obvious to the clerk. As of late it is unusual for me to walk into a store, I can unload my scooter in about 30 seconds but to walk as little as 100 feet can take up to 5 minutes. When my mobility issues are this obvious it is common for store personnel to quickly offer me assistance. In this case the clerk opened up the cosmetics register so I would not have to walk around to the regular tills. I struck up a very friendly conversation with her explaining what happened to my face, she was extremely encouraged by my attitude and desire to live a fulfilling life considering the kind of shape I was in. I enjoy talking to people about my situation and I’m always open about my MS, it makes me feel good to know that I inspire others.
I have received several email and Facebook comments recently from people responding to my blogs with the common theme being how surprised people are that I can remain so positive. As I’ve explained, it all stems from my faith in God but don’t be fooled, it’s not easy! When I’m facing difficult circumstances like I am now with continuing progression and problems, it’s easy to get discouraged. I am fortunate to have support and prayer from so many people and this keeps my will strong however the unknowns are still scary. Beginning around January I started to notice new and worsening symptoms that seemed to slowly get worse. If you have read my blog you know what’s been happening up to this point and regrettably it’s not good. I used to see the decline occur slowly week to week but now I can almost trace it day to day! It is a very uncomfortable and helpless feeling not knowing where or when things will stop or at least stabilize. I guess it just goes part and parcel with the disease and this in turn strengthens my resolve and determination to find treatment.
In February the Buffalo results were released and I’m happy to report that they were positive showing 55% of participants with MS were found to have CCSVI while 26% of participants without MS were found to have the condition. Looking at different interpretations of the data, when 10% of participants showing borderline results were excluded, over 62% of MS patients had CCSVI. The bottom line is that the study showed a direct correlation between multiple sclerosis and CCSVI and will promote a tidal wave of further research. When you look at the anecdotal evidence of treatment for CCSVI the picture looks even more promising even though it isn’t considered to be scientific. When reviewing patient reports from those treated for CCSVI from Dr. Zamboni, Dr. Dake and Dr. Simka, the vast majority of patients reported notable improvements in their health status and I do not think this can be overlooked.
Even though there will be a ton of new research underway, the fact remains that treatment in Canada will still not be readily available for years. Given what has been happening with me lately, I don’t have that kind of time and my goal of being tested and treated within six months is progressing. I don’t have any further information on the local doctor that is working on CCSVI but I do have other irons in the fire. I was informed of another doctor in the U.S. that is doing the treatment and have been in contact with his office. This doctor is doing things on the QT right now so I won’t talk about any specifics yet. Since I’m from Canada it is very unlikely that I will get any help from insurance or Alberta Health but the treatment will not cost anything like the $80,000 quoted by Dr. Dake. They have not come up with a fee structure yet but they will contact me very soon and I am on their list for treatment. In addition to this, the foreign clinic I spoke of earlier is now ready to roll but they are not set up for stents yet. My contact will be going to Mexico within the next three weeks to finalize details but I’m told I am on the A list and that I’ll be taken care of. I still don’t know how things will play out for me but I will leave it in God’s hands and live in peace knowing things will work out for me.
I know that there are already clinics operating in several different countries offering testing and treatment for CCSVI so there is a lot of hope out there. Even though I feel some desperation in my situation, I will fully investigate the doctors and procedures before opting for any treatment. The required protocols are now becoming widely accepted so things are moving in the right direction and actually at an unprecedented pace! We still have a ton to learn about CCSVI and how it relates to multiple sclerosis but the wheels are now turning and I believe there is real hope for those of us suffering from this devastating disease.
LC
My volunteer's heart is not in her throat yet!
My dedicated CADS volunteers
Click on the picture to blow up my beat up face
My ski season ended last Friday, what an evening as you can kind of see from the pictures. I had my kids again for the weekend so I asked a friend to watch them Friday evening while I went skiing. She has two boys the same age as my children so it’s a very good babysitting exchange. We arrived in Airdrie around 4:30 pm and my friend had ordered pizza for dinner. An unfortunate incident occurred at the end of my first slice, as I bit into the crust I heard that gut wrenching cracking sound from within my mouth. My friend immediately turned to me with a look of anguish in her face; she asked if my tooth was all right because that did not sound good. Initially I thought I had just bitten into something that shouldn’t have been in that crust and thought everything was okay. I spit out the small amount of food remaining in my mouth and my tongue could not feel any damage so I began my second piece. After a few seconds my tongue was back to feeling around and once I had the food cleared away I discovered that my tooth was indeed damaged. The inside edge of my tooth felt very rough and uncomfortable, I began digging around in the tiny bit of chewed up food I had spit out. This really grossed out my friend but I needed to find what it was that I bit into. Turns out I couldn’t see anything hard that would have caused this but I did discover a white piece of porcelain shaped like a shark tooth that just happened to be the inside layer of my tooth that had chipped right off! I believe this was a crown I had done in the last year so hopefully my dentist will cover the repair. I was lucky enough that I didn’t expose a root and there is not a lot of pain so I can continue to eat albeit very tentatively. I cannot get back into the dental office that did the work until March 11th so hopefully it will not become a bigger problem by then.
This was not a positive note to start my last night of skiing but I was off to COP anyway. After all, it was the last lesson of the season and I wanted to have a good showing. One of my instructors was enquiring about how I felt after last week and a couple of good falls that I took. My shoulders were a little sore and early on in the week, I had a headache for two days that had started instantly after smacking my head in one of my wipeouts. It wasn’t serious and did not pose any difficulty throughout the week so I was ready to go although Cheryl one of my volunteers was concerned about a possible concussion. I assured her that I was fine so we headed out to get strapped in and up the chair. I had explained some of the problems I faced the last time out like total fatigue setting in on my last run and increased balance issues due to dizzy spells. Cheryl thought I should do a practice run before going to the top but I declined and my other instructor agreed. Cheryl is very sweet and concerned with my safety; she has a real motherly instinct and worry mechanism that kicks in. She tells me that her heart jumps up into her throat every time she sees me picking up too much speed!
I was actually concerned myself because my dizzy spells had increased throughout the last week so I wasn’t sure how well I’d be able to handle the sit-ski. Things went relatively smooth on my first run down; it was my second run that things got a little sketchy. I started from the top in great form but about a third of the way down I took a tumble, actually quite an impressive wipeout! I was also skiing with another volunteer on his sit-ski who analyzes my runs, his comment to me was that my first eight or so turns got a 10 but my crash only earned me a 6. I thought it should have been better because I did a complete face plant! After getting my ski upright again, I assumed that I just had snow and ice dripping from my face but it turned out to be blood! After Cheryl tenderly tried to wipe the blood from my face, I was off again until about three quarters of the way down when I bit it again. Ironically, I did another face plant but this time I was awarded a 9! I have had many falls but this was the first night that I actually did a face plant! It didn’t seem as bad as my first fall but I was happy to increase my artistic score. When I got to the bottom there were several CADS volunteers that came by to talk about the run and have a little chuckle. The resulting appearance of my bloodied face looked much worse than the actual fall and like I said, I couldn’t even tell that I was bleeding. I’ve always considered myself to be a rough and tumble type of guy so these wipeouts did not faze me and after one of the volunteers patched me up with a bandage on my nose, away we went back up the chair. My next run did not work out very well, I was hitting the fatigue factor and my head was spinning a little. About half way down my instructor decided to strap the tether onto the back of my sit-ski to get me the rest of the way down safely. I actually did not mind the bashed up face, it was my final night of skiing and would leave me with some lasting memories, and I still had a blast!
Now onto what’s been going on with my body. Life with MS has become increasingly difficult lately but I continue to push onward, like skiing for example. I was concerned about the effectiveness of my last course of high dose steroids because I was not having a severe attack. As it turns out the prednisone had a very limited positive result because my symptoms have not really subsided and I have experienced increased and new problems. As I wrote in my last blog, I did see an increase in energy and my legs did seem to get stronger but these improvements were not significant enough to outweigh the negative impact that this attack is still having. Perhaps the steroids prevented an extreme escalation in my symptoms but no one can say for sure. At any rate, I finished the prescription, I’m still mobile, and functioning well, which is a positive. I am still finding my coordination difficult and my walking is slower and more awkward than it’s been in a long while but I am hoping things will level off. The more troubling problem is with my vertigo and this is somewhat new for me. I am getting dizzy spells more frequently than I ever have and it’s a little weird. Not that I haven’t experienced this before but they are more pronounced and difficult to overcome. When I get up from lying down it hits me instantly and sometimes lying down will bring it on. I haven’t experienced this situation since my late teen years when I was discovering alcohol and the infamous bed spins! Sometimes looking up at the ceiling or sky will trigger the effect and simply standing up quickly or turning my head to look behind me will bring it on. Unfortunately there isn’t anything I can do to stop this, I just have to be careful and cope with the situation.
I am now quite concerned because I seem to be far from stabilizing. Fortunately skiing did end last week because I’m not that confident that I could continue as certain symptoms seem to worsen, the most problematic being my vertigo issue. My dizzy spells are very frequent and my walking ability has really deteriorated. I am used to being very slow but slow has now taken on a new meaning. For example, yesterday I was at Shoppers Drug Mart to pick up some vitamin E oil to apply to my facial abrasions now that scabs are forming, the difficulty I had walking was painfully obvious to the clerk. As of late it is unusual for me to walk into a store, I can unload my scooter in about 30 seconds but to walk as little as 100 feet can take up to 5 minutes. When my mobility issues are this obvious it is common for store personnel to quickly offer me assistance. In this case the clerk opened up the cosmetics register so I would not have to walk around to the regular tills. I struck up a very friendly conversation with her explaining what happened to my face, she was extremely encouraged by my attitude and desire to live a fulfilling life considering the kind of shape I was in. I enjoy talking to people about my situation and I’m always open about my MS, it makes me feel good to know that I inspire others.
I have received several email and Facebook comments recently from people responding to my blogs with the common theme being how surprised people are that I can remain so positive. As I’ve explained, it all stems from my faith in God but don’t be fooled, it’s not easy! When I’m facing difficult circumstances like I am now with continuing progression and problems, it’s easy to get discouraged. I am fortunate to have support and prayer from so many people and this keeps my will strong however the unknowns are still scary. Beginning around January I started to notice new and worsening symptoms that seemed to slowly get worse. If you have read my blog you know what’s been happening up to this point and regrettably it’s not good. I used to see the decline occur slowly week to week but now I can almost trace it day to day! It is a very uncomfortable and helpless feeling not knowing where or when things will stop or at least stabilize. I guess it just goes part and parcel with the disease and this in turn strengthens my resolve and determination to find treatment.
In February the Buffalo results were released and I’m happy to report that they were positive showing 55% of participants with MS were found to have CCSVI while 26% of participants without MS were found to have the condition. Looking at different interpretations of the data, when 10% of participants showing borderline results were excluded, over 62% of MS patients had CCSVI. The bottom line is that the study showed a direct correlation between multiple sclerosis and CCSVI and will promote a tidal wave of further research. When you look at the anecdotal evidence of treatment for CCSVI the picture looks even more promising even though it isn’t considered to be scientific. When reviewing patient reports from those treated for CCSVI from Dr. Zamboni, Dr. Dake and Dr. Simka, the vast majority of patients reported notable improvements in their health status and I do not think this can be overlooked.
Even though there will be a ton of new research underway, the fact remains that treatment in Canada will still not be readily available for years. Given what has been happening with me lately, I don’t have that kind of time and my goal of being tested and treated within six months is progressing. I don’t have any further information on the local doctor that is working on CCSVI but I do have other irons in the fire. I was informed of another doctor in the U.S. that is doing the treatment and have been in contact with his office. This doctor is doing things on the QT right now so I won’t talk about any specifics yet. Since I’m from Canada it is very unlikely that I will get any help from insurance or Alberta Health but the treatment will not cost anything like the $80,000 quoted by Dr. Dake. They have not come up with a fee structure yet but they will contact me very soon and I am on their list for treatment. In addition to this, the foreign clinic I spoke of earlier is now ready to roll but they are not set up for stents yet. My contact will be going to Mexico within the next three weeks to finalize details but I’m told I am on the A list and that I’ll be taken care of. I still don’t know how things will play out for me but I will leave it in God’s hands and live in peace knowing things will work out for me.
I know that there are already clinics operating in several different countries offering testing and treatment for CCSVI so there is a lot of hope out there. Even though I feel some desperation in my situation, I will fully investigate the doctors and procedures before opting for any treatment. The required protocols are now becoming widely accepted so things are moving in the right direction and actually at an unprecedented pace! We still have a ton to learn about CCSVI and how it relates to multiple sclerosis but the wheels are now turning and I believe there is real hope for those of us suffering from this devastating disease.
LC
Subscribe to:
Posts (Atom)
