So the year is 2011, I wonder what will the coming year have in store for me? 2010 was a year full of unplanned and unexpected events, some good and some bad. A lot happened in my life and nothing was planned or foreseen, things just happen and that’s life, we just have to learn to roll with it. For me that means trusting God and the plan He has for my life. This is not to say that I won’t make plans for myself and set my own personal goals, I just pray that I can stay on the path that God wants me to follow whatever and where ever that may lead. Who knew that 2010 would be the year that I’d find love and companionship again, something I couldn’t plan for but a long standing prayer finally answered. I also had a goal to be tested and treated for CCSVI but who would have ever thought that goal would lead me to Egypt! As much as we’d like to believe that we can control our destiny and the detailed happenings of our life, ultimately it is out of our hands. Not that we can’t affect the outcomes we experience through our individual actions and behavior but we must realize that even the most well thought out plans can come crashing down around us at any moment, hence my trust and faith in God! My true hope is that I will not experience any further progression with my MS symptoms and disabilities.
Having said that, I am still feeling pretty good although I have recently had some new difficulties arise. Actually they are not new; I just haven’t had to deal with this issue for a very long time. It is another neurological pain that I get in my shoulder and armpit and like always there isn’t any particular movement that seems to trigger it. It’s frustrating because there isn’t anything I can do to alleviate or prevent the pain. It is a sharp piercing type of pain that elicits an involuntary type of yelp as though I was just stabbed. Although this pain is new for the moment, it is a recurring problem from the past so I do not consider it as a new symptom or indication of an attack, just another issue to deal with. I was worried that it would hit me as I was working out but it hasn’t happened. I also thought it might affect me while I was skiing but again I was fine. It’s one of those things that I just have to wait out and eventually it will disappear on its own. About a week ago I thought it was gone because I hadn’t felt it in several days but it turns out that was just wishful thinking because it’s back however the pain is different now. Instead of being an instantaneous reactionary type of pain, it is now less intense but prolonged for many seconds and occasionally for up to half a minute. It’s more than something that comes and goes very briefly, I can experience prolonged periods, several hours at a time when the pain is not constant but very active throughout the entire time period and then it will fade away until the next episode starts again. I haven’t felt it today but that doesn’t mean it’s gone, problem is nobody knows when and if it will return.
I continue to stay active working out at least twice a week and skiing every Friday evening. I really enjoy skiing, it feels great to participate in a sporting activity and watch my abilities improve week to week. I was fortunately able to pick up right where I left off last year and each time out I get better. The conditions were very difficult last Friday because we had such warm weather throughout the week there was a lot of melting happening and by Friday evening it was snowing heavily and the temperatures had dropped resulting in the entire ski hill transforming into a huge sheet of ice! Then to make matters worse huge ruts had developed when the snow was soft and had now turned hard with the drop in temperature but worse yet was the problem that everything appeared fine under a covering of fresh new powder! Well everything wasn’t fine, quite dangerous actually. The supervisors had warned against going to the top and suggested to use the magic carpet or the snowmobiles to only go partial way up the hill. I tried that for my first run and then said “forget that noise, let’s jump on the chair and go to the top!” Well on my first ride up the chairlift we saw at least three injury wipeouts and a few people that had actually removed their skis and were walking down the hill! It was pretty crappy but I made it down fine, only a couple of wipeouts. I only did a few more runs that evening but I was quite impressed with myself as were my CADS ski partners!
In terms of follow up to my angioplasty procedure, I have an appointment with a vascular surgeon in March as well as an MRI. The MRI is scheduled to review the status of my brain to ensure that there are not any issues developing from my use of Tysabri. Everything feels fine but they are very cautious with the use of Tysabri these days. It will be very interesting to see if any new lesions have developed and what if anything has happened to my existing lesions. My appointment with the vascular surgeon will be even more interesting. I’m not expecting much but I am very curious to hear his thoughts on my collapsed jugular and his recommendations for what I should do next. Unfortunately I still won’t have the CD of my procedure; I don’t expect I’ll ever get that now. Dr. Sinan had told me that he would try to get this information from Dr. Sameh who runs the imaging in Alexandria but I’ve been down that road before without any success. Given the riots and turmoil that are going on in Egypt now, who knows if Dr. Sinan will even continue doing angioplasty procedures outside of Kuwait for foreign patients. I feel fortunate to have visited Egypt before any of this chaos began because the country has now changed dramatically.
Even though the country has been ruled by a dictator with an iron fist for years and years, this was not apparent in Egyptian society when I visited. However it was obviously felt by the Egyptian people given the demands for President Mubarak to step down immediately. Although I could sense uneasiness and perhaps fear of the police force and army, complete discontent with the government was not evident. I now worry for the people of Egypt regarding who will be the next to govern as it appears a hard-line Islamic regime will take over and I fear the people will fall into an even more oppressive state, women in particular. With everything that is going on in the region right now, I feel this will be a very critical and historic time not only for the Middle East but the world in general. My prayers will be with the people of Israel as significant changes take place in this part of the world! Even though I may complain about issues such as the inability to receive a simple medical procedure to treat CCSVI, I am extremely grateful to live in Canada, what I believe to be the best country in the world!
My attitude has always been to find happiness in what I do have and not lament over the things that I have lost. I feel fortunate for all of the blessing I have in my life, yes even with the challenges and hardship I face with having multiple sclerosis. It all goes back to the realization that things can always be worse! As I said earlier, I don’t know what the coming year will have in store for me but I’ll take it in stride, remain positive, thankful and hopeful. I’ll continue to take care of myself as best I can believing firmly that God has a plan for me and that ultimately everything will be alright. SMILE…it will only bring good!
LC
Thursday, February 3, 2011
Thursday, December 23, 2010
2010 REFLECTIONS
The year is quickly coming to a close so I thought I’d better squeeze in one last blog. Wow the year went fast, always does but it seems to accelerate as I get older, just like my mother said. So I guess it’s now a time to reflect back on the year and there is a lot to look back on. I’ll begin with my health and where I’m at today compared with a year ago. Unfortunately I can’t say that I’m any better, an honest assessment would gauge my condition as a little worse. I say that in terms of my functional abilities, my mobility issues are a little more troublesome today. This is a very subjective conclusion but I feel a little slower and less sure on my feet. Not that I would classify this as significant progression, maybe more like slight progression but my life sure hasn’t gotten any easier which is a disappointment considering the elevated hopes I had with the Liberation procedure but I’ll get into that a little later. The fact is that I’m still doing alright when I look at my life as a whole rather than a specific problem I may have with my legs or my eyes. I am still mobile, I can still drive, I continue to feel and look strong and I’m still a very happy, optimistic and positive person. That’s more than I can say about many so called healthy people in the general population.
It was a very significant year in the world of multiple sclerosis, specifically in reference to CCSVI. One year ago there was a huge fervor being created over Dr. Zamboni’s theory, intense confrontation between the medical community and MS sufferers and very little action in terms of the demand for testing and treatment. At that time the thought of getting an ultrasound test in Canada was a pipe dream never mind the distant possibility of finding treatment anywhere! Today there are numerous facilities around the world offering treatment and the fact that I was able to go for an ultrasound test last month without a problem and Alberta Health paid for it is the complete opposite of how things were a year ago. Receiving the results of my ultrasound was a different story however. I told the clinic that I’d pick them up but when I called two days later to confirm that they were ready I was told that they had been mailed. So after giving it over a week and they still hadn’t come I called back to hear that there must have been some kind of mistake and they would put them in the mail that day. Well another ten days later they still weren’t here and I got the same response! So I finally picked them up this week, what a hassle. The results were just as I had explained them but now I have the actual report that I can send to Dr. Sanin. The important part of the report was the doctor’s impression which stated “the appearance of my right jugular vein suggests there was some type of injury at the time of catheterization which caused an occlusive change to occur in the right IJV throughout. There is no procedure that could be used to open the collapsed vein now. It was not a thrombosis but a traumatic injury to the vein that caused its total collapse”. Everything else appeared good but I would like Dr. Sinan’s opinion on this. Not that there is anything he can do about it now but he needs to know this information for his own study. The number of studies to investigate CCSVI around the world is huge and our understanding of Zamboni’s theory has grown immensely. Acceptance of the necessity to study CCSVI is now widespread even here in Alberta where as little as a few months ago the possibility of government funding was nonexistent. Just this month the Alberta government announced one million dollars for an observational study to understand the safety and patient reported benefits of CCSVI. In terms of how things typically move through our medical and scientific establishments, CCSVI is on a rocket ride! It was started in Canada by Premier Wall in Saskatchewan when he announced $5,000,000 to study CCSVI and Newfoundland is following suit with a similar study to Alberta. Actually I should correct that, it was all started by people living with MS and their loved ones. The government, medical establishment and yes even the MS Society could no longer ignore the vocal and persistent MS sufferers who insisted that they were being denied a legitimate treatment. I’m happy to say that I was involved in that process along with wonderful groups like CCSVIcalgary.org and similar organizations that popped up all over the country. My earlier concerns over coordination of all these various investigations has been alleviated somewhat. There is cooperation happening throughout the world now and I believe some answers are not far off. I was contacted by the Calgary MS clinic this week to ask if I would participate in a project to review an online questionnaire that will be part of the Alberta study. They are asking for help to determine if the questions being asked are clear and easy to understand. They are asking for input into the questions and for any additions that should be included as well as important information about CCSVI that have not been asked that I feel should be included in the survey. This was a real shocker coming from a department of neurologists but extremely welcome. They need this back by January 2nd which is kind of rushing me given the season but they are trying to start the study very quickly which almost seems counterintuitive considering they estimate the overall study to take 3 years to complete! That is the part that I’m not happy with but at least its positive progress.
Either way I still have to live day to day and carry on with my life as best I can. That means continuing to work out and take care of myself. One positive that I’m looking forward to is skiing and it starts again on January 7th, woohoo! My balance hasn’t been too good and my left eye is really giving me trouble but I’m eager to get out there regardless. I’ve got some nasty wipe outs that are still fresh in my mind that need to be improved upon. I suppose there’s always Christmas to look forward to as well, only two more sleeps! Today is also my daughters eighth birthday and tomorrow will be a big celebration with her and the rest of my family. Then after Christmas I’ll be packing my kids up to spend some time in Fairmount, lots of good things ahead including a new year and a new decade! I feel very positive about things to come, not only in my life but with advancements in the treatment of multiple sclerosis. Last year definitely had its challenges and tough times but I got through it. My father passed away and that was very hard on me but the sun always comes up tomorrow. I had the aforementioned disappointment with my angioplasty results but my hope is not lost on that effort yet! On the flip side I had an awesome experience travelling Egypt and Germany. I also had the incredible blessing of meeting the love of my life and I now have an incredible and beautiful woman to share my future with. It was a long wait but I knew the good Lord had someone out there for me; it just took a lot of faith to be patient with His plan.
So there is a lot to reflect upon for 2010, there were some very bad occurrences but some very good things that happened as well. I guess that is what life is all about, but more importantly is how we respond to and use our experience to create positive outcomes in our life. This is not always easy but if we don’t focus on the positives, the negatives can burry us emotionally and physically. I’m taking a positive outlook for 2011, who knows what will come of this year but I must remain optimistic. I know that everything is in God’s hands and my hope and faith are securely anchored to the rock that Jesus laid down for us. It’s this time of year that we should acknowledge this and give praise and thanks to our saviour Jesus Christ, I know I do! Well that’s my year wrapped up and over all I feel it was a pretty good year and I joyfully anticipate 2011. I wish everyone a Merry Christmas and of course a Happy and Healthy New Year.
GOD BLESS
LC
It was a very significant year in the world of multiple sclerosis, specifically in reference to CCSVI. One year ago there was a huge fervor being created over Dr. Zamboni’s theory, intense confrontation between the medical community and MS sufferers and very little action in terms of the demand for testing and treatment. At that time the thought of getting an ultrasound test in Canada was a pipe dream never mind the distant possibility of finding treatment anywhere! Today there are numerous facilities around the world offering treatment and the fact that I was able to go for an ultrasound test last month without a problem and Alberta Health paid for it is the complete opposite of how things were a year ago. Receiving the results of my ultrasound was a different story however. I told the clinic that I’d pick them up but when I called two days later to confirm that they were ready I was told that they had been mailed. So after giving it over a week and they still hadn’t come I called back to hear that there must have been some kind of mistake and they would put them in the mail that day. Well another ten days later they still weren’t here and I got the same response! So I finally picked them up this week, what a hassle. The results were just as I had explained them but now I have the actual report that I can send to Dr. Sanin. The important part of the report was the doctor’s impression which stated “the appearance of my right jugular vein suggests there was some type of injury at the time of catheterization which caused an occlusive change to occur in the right IJV throughout. There is no procedure that could be used to open the collapsed vein now. It was not a thrombosis but a traumatic injury to the vein that caused its total collapse”. Everything else appeared good but I would like Dr. Sinan’s opinion on this. Not that there is anything he can do about it now but he needs to know this information for his own study. The number of studies to investigate CCSVI around the world is huge and our understanding of Zamboni’s theory has grown immensely. Acceptance of the necessity to study CCSVI is now widespread even here in Alberta where as little as a few months ago the possibility of government funding was nonexistent. Just this month the Alberta government announced one million dollars for an observational study to understand the safety and patient reported benefits of CCSVI. In terms of how things typically move through our medical and scientific establishments, CCSVI is on a rocket ride! It was started in Canada by Premier Wall in Saskatchewan when he announced $5,000,000 to study CCSVI and Newfoundland is following suit with a similar study to Alberta. Actually I should correct that, it was all started by people living with MS and their loved ones. The government, medical establishment and yes even the MS Society could no longer ignore the vocal and persistent MS sufferers who insisted that they were being denied a legitimate treatment. I’m happy to say that I was involved in that process along with wonderful groups like CCSVIcalgary.org and similar organizations that popped up all over the country. My earlier concerns over coordination of all these various investigations has been alleviated somewhat. There is cooperation happening throughout the world now and I believe some answers are not far off. I was contacted by the Calgary MS clinic this week to ask if I would participate in a project to review an online questionnaire that will be part of the Alberta study. They are asking for help to determine if the questions being asked are clear and easy to understand. They are asking for input into the questions and for any additions that should be included as well as important information about CCSVI that have not been asked that I feel should be included in the survey. This was a real shocker coming from a department of neurologists but extremely welcome. They need this back by January 2nd which is kind of rushing me given the season but they are trying to start the study very quickly which almost seems counterintuitive considering they estimate the overall study to take 3 years to complete! That is the part that I’m not happy with but at least its positive progress.
Either way I still have to live day to day and carry on with my life as best I can. That means continuing to work out and take care of myself. One positive that I’m looking forward to is skiing and it starts again on January 7th, woohoo! My balance hasn’t been too good and my left eye is really giving me trouble but I’m eager to get out there regardless. I’ve got some nasty wipe outs that are still fresh in my mind that need to be improved upon. I suppose there’s always Christmas to look forward to as well, only two more sleeps! Today is also my daughters eighth birthday and tomorrow will be a big celebration with her and the rest of my family. Then after Christmas I’ll be packing my kids up to spend some time in Fairmount, lots of good things ahead including a new year and a new decade! I feel very positive about things to come, not only in my life but with advancements in the treatment of multiple sclerosis. Last year definitely had its challenges and tough times but I got through it. My father passed away and that was very hard on me but the sun always comes up tomorrow. I had the aforementioned disappointment with my angioplasty results but my hope is not lost on that effort yet! On the flip side I had an awesome experience travelling Egypt and Germany. I also had the incredible blessing of meeting the love of my life and I now have an incredible and beautiful woman to share my future with. It was a long wait but I knew the good Lord had someone out there for me; it just took a lot of faith to be patient with His plan.
So there is a lot to reflect upon for 2010, there were some very bad occurrences but some very good things that happened as well. I guess that is what life is all about, but more importantly is how we respond to and use our experience to create positive outcomes in our life. This is not always easy but if we don’t focus on the positives, the negatives can burry us emotionally and physically. I’m taking a positive outlook for 2011, who knows what will come of this year but I must remain optimistic. I know that everything is in God’s hands and my hope and faith are securely anchored to the rock that Jesus laid down for us. It’s this time of year that we should acknowledge this and give praise and thanks to our saviour Jesus Christ, I know I do! Well that’s my year wrapped up and over all I feel it was a pretty good year and I joyfully anticipate 2011. I wish everyone a Merry Christmas and of course a Happy and Healthy New Year.
GOD BLESS
LC
Tuesday, November 23, 2010
HALF EMPTY OR HALF FULL????
So it’s been five months almost to the day that I had my angioplasty procedure, we’ve definitely had the transition from summer to winter! It’s been so cold that I’m really longing for the hot temperatures of Egypt! My status is holding pretty steady, mobility and balance are as difficult as ever but I have energy and I’m feeling pretty good. Still going to the gym, what has typically been twice a week anyway, it gets much more difficult once winter hits! Not just the cold but the snow and ice as well, getting my scooter in and out of my van is some times a real challenge. Walking through snow is very hard considering I don’t lift my feet too high when I walk. I should invent a slipper sweeper; the floors in my house would always be clean because I tend to drag my feet when getting around my house. Spasticity in my legs is still an issue and this gets worse when I’m really cold and last night was -30 Celsius but -40 with the wind chill…SERIOUSLY COLD! I don’ t know what that felt like because I didn’t venture outside of my house and who wants to battle that kind of extreme conditions especially when you have to contend with my speed which is slower than slow. Going to the gym on those days is not on the schedule but I have been able to maintain twice a week which is quite a feat. Apparently the weather will be giving me a break later this week; at least that’s what “they” say.
Today was only -27 so nice enough for me to get out; actually it’s not so bad when it’s clear and not windy. I had my ultrasound appointment this morning so I had to go out regardless. It was a good news/bad news scenario, my left jugular was open and appeared good but my right was completely occluded. It was tough to find the vein but the doctor’s opinion was that it was collapsed, definitely not open. So hmmm, what does that mean? I have lost some of the benefits that I felt, my eyes bother me again and my body buzz has returned somewhat but I don’t feel like I’ve progressed and that’s good, subjective but good. Now what??? Dr. Steed was unaware that I had already had angioplasty and started off our conversation with his opinion that people should wait before rushing out of the country to have the procedure. He was mostly concerned about stents and after more than 20 years in the field his opinion is worthy. It seems many people are coming back with stents and he doesn’t feel that they are being properly informed about all of the risks. His concern is not over stents slipping but he doesn’t believe we have the proper stents or experience with veins specifically rather than arteries. He was pleased that I didn’t receive a stent but I really didn’t have much information for him. It was my right side that almost needed a stent until Dr. Sinan basically forced the valve to stay open so I don’t understand why my right jugular is now closed. The fact of the matter is that I don’t think anyone knows the answer to that. Who knows about my azygos vein because you can’t see it with the ultrasound. It will take a few days to get the CD of my scan and the report but when I receive it I’ll begin to make some enquiries and contact Dr. Sinan in Kuwait for his opinion. For now at least I know some blood is flowing from my brain so I think I’ll remain positive and wait for more information to come from the many studies that are going on around the world. It will take long enough for me to pay off the first procedure let alone taking off to have it done again. It is much easier to have it done these days but I think I’m best off to wait and see how things go, but I will start researching again and get back in tune with the CCSVI world.
I will soon be on my third month of Tysabri so hopefully that will also help keep progression at bay. It’s really the situation as always, carry on and remain happy, thankful and hopeful. I am seeing positive results from the gym so as long as I can, I’ll continue working out. I’ve always kept a muscular upper body but I can see leg muscles now, they really are getting bigger and stronger. You know what “they” say, “use it or lose it!” I’ve just changed my workout routine around with my trainer. I’m still working on a lot of core strengthening and exercises focused on balance. It all seems a little weird to me because I’m used to working out with more weight and focus on particular muscle groups. My trainer says that my upper body is very strong so I’m working on other muscles to prevent the stronger muscle groups like my shoulders from stepping in to dominate. Rather than focusing on building my biceps or other individual muscle groups I’m doing much more general type of exercises that seem to spread more of the strength building. It doesn’t seem like I’m accomplishing as much but interestingly the results show a different outcome. Doing an exercise that works 3 or 4 muscles is actually showing results even though it doesn’t seem as intense and focused. Many exercises don’t even involve the use of gym equipment and weights so it seems odd but my body is responding none the less. When the day comes that my brain and body can communicate effectively again, I’ll be ready to go rather than letting myself waste away! I just pray to God that I remain healthy enough and live long enough to truly experience that day. We have to keep the hope alive and believe that the day will come!
As I said, in the meantime I’ll just continue to carry on as best I can and as long as I can. Hopefully this will be for an indefinite amount of time but I still have to live and treat this disease day by day. The real secret is in maintaining my smile and faith and I can’ t see that changing anytime soon.
LC
Today was only -27 so nice enough for me to get out; actually it’s not so bad when it’s clear and not windy. I had my ultrasound appointment this morning so I had to go out regardless. It was a good news/bad news scenario, my left jugular was open and appeared good but my right was completely occluded. It was tough to find the vein but the doctor’s opinion was that it was collapsed, definitely not open. So hmmm, what does that mean? I have lost some of the benefits that I felt, my eyes bother me again and my body buzz has returned somewhat but I don’t feel like I’ve progressed and that’s good, subjective but good. Now what??? Dr. Steed was unaware that I had already had angioplasty and started off our conversation with his opinion that people should wait before rushing out of the country to have the procedure. He was mostly concerned about stents and after more than 20 years in the field his opinion is worthy. It seems many people are coming back with stents and he doesn’t feel that they are being properly informed about all of the risks. His concern is not over stents slipping but he doesn’t believe we have the proper stents or experience with veins specifically rather than arteries. He was pleased that I didn’t receive a stent but I really didn’t have much information for him. It was my right side that almost needed a stent until Dr. Sinan basically forced the valve to stay open so I don’t understand why my right jugular is now closed. The fact of the matter is that I don’t think anyone knows the answer to that. Who knows about my azygos vein because you can’t see it with the ultrasound. It will take a few days to get the CD of my scan and the report but when I receive it I’ll begin to make some enquiries and contact Dr. Sinan in Kuwait for his opinion. For now at least I know some blood is flowing from my brain so I think I’ll remain positive and wait for more information to come from the many studies that are going on around the world. It will take long enough for me to pay off the first procedure let alone taking off to have it done again. It is much easier to have it done these days but I think I’m best off to wait and see how things go, but I will start researching again and get back in tune with the CCSVI world.
I will soon be on my third month of Tysabri so hopefully that will also help keep progression at bay. It’s really the situation as always, carry on and remain happy, thankful and hopeful. I am seeing positive results from the gym so as long as I can, I’ll continue working out. I’ve always kept a muscular upper body but I can see leg muscles now, they really are getting bigger and stronger. You know what “they” say, “use it or lose it!” I’ve just changed my workout routine around with my trainer. I’m still working on a lot of core strengthening and exercises focused on balance. It all seems a little weird to me because I’m used to working out with more weight and focus on particular muscle groups. My trainer says that my upper body is very strong so I’m working on other muscles to prevent the stronger muscle groups like my shoulders from stepping in to dominate. Rather than focusing on building my biceps or other individual muscle groups I’m doing much more general type of exercises that seem to spread more of the strength building. It doesn’t seem like I’m accomplishing as much but interestingly the results show a different outcome. Doing an exercise that works 3 or 4 muscles is actually showing results even though it doesn’t seem as intense and focused. Many exercises don’t even involve the use of gym equipment and weights so it seems odd but my body is responding none the less. When the day comes that my brain and body can communicate effectively again, I’ll be ready to go rather than letting myself waste away! I just pray to God that I remain healthy enough and live long enough to truly experience that day. We have to keep the hope alive and believe that the day will come!
As I said, in the meantime I’ll just continue to carry on as best I can and as long as I can. Hopefully this will be for an indefinite amount of time but I still have to live and treat this disease day by day. The real secret is in maintaining my smile and faith and I can’ t see that changing anytime soon.
LC
Wednesday, October 20, 2010
IT’S NOT LAZINESS…JUST NOT MUCH TO TELL
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
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
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
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