This Is MS Multiple Sclerosis Community: Knowledge & Support

You may have read that I travelled to Egypt and received treatment with Dr Tariq's (Dr Sinan's) team late December. You might also be aware that I suffered a thrombosis, (a mild thrombosis I was told by the Kuwaiti/Egyptian team) in my left jugular vein. I received an appointment letter the day before yesterday at half past eleven for an appointment that was itself the day before yesterday at eleven, to have this checked out by an NHS vascular specialist. It's to be rescheduled for next week.When I have more news I'll tell it - hopefully, at some stage, my left jugular will be clear of the thrombosis and I'll experience greater benefits than the modest ones which I have already experienced.

Anyway, what I am writing about here is that, worryingly, I received a message from a man who was treated in Alexandria late last year and also suffered a thrombosis. He said that he thought at least one, perhaps two of his month's group did so too . On further investigation I have found out that another man suffered a blood clot that required prompt first-of-its-kind surgery.

I don't know the exact figures but it seems that along with Dr Tariq's aggressive techniques (and, therefore, the possibility of a lower restenosis rate) may come a greater risk of thrombosis.

Dr Tariq and his team strike me as being highly skilled and highly competent but I thought I ought to bring this up. I'd probably advise you to contact him first should you plan to visit Alexandria. It's a lovely place to visit!

I may not suffer restenosis because of the aggressive techniques that actually caused the thrombosis, but this is just to let you be aware that there may be a risk.

edited for grammar!

What anticoagulation regimen does Dr. Tariq's (Dr Sinan's) team use (specific med(s), start-time, duration, etc...)?

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It's a paradigm shift

they use clexane. it was thought that this rash of thromoses might be related to a lot of clexane.

Thanks L for letting us know. There are many people (myself included) want to have a more aggressive technique when it comes to dilating the veins in order to prevent restenosis. But, maybe it comes at a cost?

Anticoagulation (type, dose, duration) treatment afterwards is SO important.

L, it was an immediate thrombosis, wasn't it, discovered the same day of the procedure or the day after? How long were the durations of the balloonings, if you know? That is a part of aggressive ballooning that could lead to thrombosis, because the blood is in stasis during the ballooning.

(There might also be greater injury to the vessel wall, where the blood could clump and clot, but that is afterwards and that is what the thinners are all for. I know Dr. Sinan prescribes Clexane, Plavix, and aspirin and my thinking has been that if a patient can throw a clot while on all those thinners, it's the patient that is abnormal in some way (hypercoaguability).)

But with all those thinners post-procedure, are patients on anything before the procedure? It may be that anticoagulating prior to the procedure is what's needed. There is a doctor in Chicago (not AAC) that puts patients on Plavix starting four days before the procedure and of course there is Dr. Sclafani who puts patients on Arixtra an hour before the procedure, so they are anticoagulated during the procedure itself.

Best wishes with your next appointment.

Everyone, as a matter of course is put on junior aspirin for a year, 40 or 60 mg Clexane injections for a week and 75 mg Plavix tablets for a fortnight. For me the dose of Clexane was increased and both that and Plavix were prescribed for two months.

All medication to commence immediately, three hours after the procedure, and all doses once time daily.

I saw my neurologist a few weeks ago, my GP contacted him when I tried to obtain an appointment with a vascular specialist through her, and he stopped my clexane injections. He said that he would get me an appointment with a vascular specialist as soon as he could and recommended that I sto0p the clexane, he was worried about the possibility of my falling.

I thought that my appointment with the vascular doctor would happen within days, not weeks (unrealistic of me) and I have a true aversion to needles so I was quite happy with this decision.

It really is impossible to say what the real risk is but it looks as though it may be higher with aggressive techniques, yes. I'm a reckless person, I am not at all adverse to risk myself (it sounds as if I'm trying to make myself look brave but really, it is a mixture of indifference and foolishness..)

Nothing before the procedure was recommended but I'm amazed and a little annoyed with myself for not taking at least a junior aspirin a day for a few weeks leading up to it, because I knew that it may be beneficial. I was too busy eating grape seed extract and vitimin A and other things that have been rumoured to protect the body against radiation (from the CT.)

But the thrombosis was immediate, yes. I was given Heperin intravenously the night following the procedure. I can't remember the ballooning times I'm afraid, although they were announced to me. But they did seem to last quite a long while. Perhaps I remember 'two minutes' being announced a couple of times but that's nothing more than a guess.

Well, I had no flow in my left jugular vein before the procedure because of a useless valve and there is none due to the thrombosis after. To be honest, with a month of worrying passed, I now feel quite detached from the problem and see it all as an onlooker might, interested to find out what happens next but feeling too involved.

Thanks with the well wishes though Cece. I suspect that it will all turn out just fine

It was only prescribed after the procedure. In any event I thought Clexane would reduce the risk?

Does this mean a specific 'lot' or batch of Clexane? Such as if there was some that was poorly made and therefore did not work right?

Aha, OK. Thanks for clearing up my confusion. (I was thinking 'a lot' as in 'lots and lots, too much')

Dr Sclafani,

You seem to be up to speed with Dr Sinan's progress. Assuming the faulty clexane was used in December 10 as per L's report, it assumes there might be positive results going back prior to this to mid-year when Dr Sinan last reported publicly, I think. Is there any other news?

I think that, if it was a bad batch of clexane that's to blame, it has nothing to do with my procedure in December. I'm sure that they would have let me know if that were the case. I think that it must have been earlier in the year.

I don't know, if the three cases of thrombosis reported in your first post all occurred in December or late last year, a bad lot of Clexane could be a plausible guess. Especially since we haven't been having reports of thrombosis out of Egypt prior to this and then suddenly a cluster. If it's only a guess, Dr. Sinan might not have contacted you to let you know.

No, I think my thrombosis ais unrelated, just bad luck I suppose. The other person was there earlier in the year than me. I got a message via CCSVI Locator but I'm thinking that maybe they don't use it that often? I hardly ever use it myself. But when I hear back with more details I'll let you know.

Dr Sclafani - I thought I wrote this before, perhaps I forgot? Thanks for the information regarding the clexane and it's good to get an explanation. Thanks.