Thursday, July 8, 2010


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!


lorelei said... made the time beyond amazing, and I am elated that we can "survive" & enjoy each other 24/7 for 2 straight I send a big shout out to you Lee, for being the best travel companion this gal could ever dream of!!!

Loobie said...

And so it begins. This is all great to hear. I hope to God you get some positive results from this. You deserve it!

Kara said...

So happy for you!! I go today for testing in Frankfurt. Sorry for the no AC in hotels, so weird here. We have fans all over our house. Hope you were able to see some of the sites I suggested to you and your girlfriend.
Keep us posted