Well, I've been to Egypt and I thought that I'd post here and share my experiences.
I have been diagnosed with secondary progressive MS and I remember my first symptoms showed up in 2002. It's not treated me well at all, MS. Although my upper body is largely unaffected by the illness, my abductor muscles and hamstrings are so tight that I haven't been able to stand since spring 2009 :(. I first heard about CCSVI quite a long time ago, in early 2008, from Joan Beal on the thisisms forum. I ignored the news because it involved intravenous catheters and if there's one thing I can't stand it's medical interventions. Well, I could walk then (sort of) and now I can't, so perhaps it would have been better to pay more attention. But anyway, two years and a few months later I get the procedure, on the 2nd of December in fact.
Why did I go to Egypt? I thought of attending the clinic in Glasgow, it's much closer than Alexandria to London for a start. And then I thought about Brussels, it's even quicker to get there than to Glasgow with the Eurostar. But, looking at forums (with the help of google translate since they were mostly Dutch or German,) I became concerned that the Doctor there (and in Frankfurt, another option) was under treating the azygous vein. Most of my lesions are spinal lesions so I really wouldn't want to find myself worrying that something had been missed, should I end up feeling less benefits from the treatment than I had hoped for, after all rechecking the azygous vein is not so simple.
Then I watched Dr Tariq (he prefers to be addressed by his first name, I'd find out when I met him, I was calling him 'Dr Sinan' until then) giving a lecture at Dr Sclafani's S.U.N.Y. symposium on youtube ( http://www.youtube.com/watch?v=cChReoCFEN0 ). He balloons the azygous as a matter of course. Just in case. He also uses extra pressure with balloons, above and beyond the manufacturers recommendations. He will use wire outside of the balloon when he considers it necessary, to damage problematic valves, and he uses the balloon as a diagnostic tool, to check if something unseen is pinching it. These innovative techniques are probably why he reports a very low restenosis rate (something like 4%,) i suppose that Dr Tariq developed them because the Kuwaiti government (for whom he is carrying out an ongoing trial, treating the Kuwaiti MS population) forbade him from using stents. For me it was very desirable to avoid stents, possibly storing up problems in the future. For these reasons I finally decided, after changing my mind a couple of times, to travel to Alexandria.
The reason why I changed my mind a few times is that I'm a wheelchair user and the expedition seemed daunting. It turned out to be quite easy, partly because my Dad offered to accompany my girlfriend and myself (she felt quite worried by the idea of only the two of us going) and then my brother decided to join us as well, for the opportunity of seeing Egypt I think. They were a great help.
If you are unlucky enough to also use a wheelchair, be warned that Egypt is wholly un-wheelchair friendly. People are so kind though, you haven't even got time to try to work out how to get up a steep curb (or a flight of stairs ) before a few people have picked you up and carried you to where you need to be. Wheelchair taxis are non existent but there will be a way to get you in the car, don't worry. People in Egypt are exceptionally helpful.
I loved being in Egypt. I had learned some Arabic before we left and I took the opportunity to learn a bit more while I was there. We didn't have much time to be tourists, we only got the chance to visit the library (of course) and a spectacular restaurant too. My girlfriend and I have only shared one holiday in the past, she has never known me without MS and holiday planning is something which we should perhaps spend more time on, but it's not so easy (although I've decided to start doing more of it). This wasn't quite a holiday, what with the medical theme and half my family present, but being in Egypt with her was very special.
If you want to know more about getting around (we travelled to Alexandria from Cairo by train) or anything about being a tourist in Egypt, or indeed anything about the treatment there then do send a message.
That's the important part, the treatment. The Louran Hospital is an excellent hospital. The standards are high (I haven't seen a room cleaned so thoroughly) and the staff fantastic. I should mention that there's a CCSVI-treatment-in-Egypt blog post out there, that anyone considering travelling to Alexandria may well read, concerning the nurses not using alcohol swabs before giving an injection or taking blood, only water soaked cotton wool. It's actually Betadene soaked cotton wool so ignore it!
I have a phobia for medical procedures but I was surprised that this one didn't bother me in the least. In fact, I was a bit disappointed when it was over. The worst thing was the canula inserted in my arm when I arrived at the hospital (I can't stand needles) but from that point on everything else was fine.
I'd seen the severe stenosis in my right jugular vein on ultrasound that morning, and it was ballooned. On the left the blood flow had been almost completely stagnant and here a malfunctioning valve was ballooned and a 'fold' in my azygous too. Incidentally, when the LJV was treated I heard a crack- I've heard other people, on youtube testimonials, relating the same experience - what's that about?
Unfortunately I suffered what was described to me as a 'mild thrombosis' in my left jugular vein as a result of the procedure. They gave me Heperin that night (I stayed overnight, primarily because of the thrombosis but also they were running late, it was past 8 PM by the time I was back in my room) and instructed me to take clexane and plavix for two months on my return to London.
I have been referred to a vascular specialist here in the UK by my neurologist to investigate the thrombosis. When I know what's going on with it I'll update. Hopefully, and who knows, the thrombosis is yet to resolve, but will soon and I'll experience a change after having blood flowing in that vein for the first time in goodness knows how long. Or perhaps it has resolved already, an ultrasound will tell me.
So, this brings me to the important part, the results. I didn't have any expectations however I did experience slight improvements in my symptoms. The stiffness in my hands that, last year, I had begun to experience at night has all but disappeared. I'd have problems swallowing food occasionally, and I'd choke on drink if I wasn't careful - this has left me since the day of the procedure, as too has car sickness which became worse with the MS to the point where it was almost unbearable. This surprised me, the motion sickness disappearing.
All in all travelling to Alexandria was a very good experience and one that I'm glad I've had.