L wrote:Thanks Carrie + Bunny.
Back now. I enjoyed the experience very much! I can certainly give lots of advice to anyone considering travelling to Alexandria in a wheelchair. You can't imagine a less wheelchair friendly place but you can't imagine more friendly, helpful people. People appear out of nowhere and carry the wheelchair! No place is inaccessible. Yes, I have travelled quite widely but I've never met such friendly and helpful people. The Egyptians struck me as being very content and cheerful. I picked up a lot more Arabic than I set out with and I think I'd very much like to return one day.
The train from Cairo to Alexandria is a good ride. Two and a half hours or three and a half depending on whether you take the express or the slow train. The slower one is older (French built I think) and the express is a Spanish built train which, incidentally, had such narrow compartment doors it would not allow my very narrow wheel chair in, so I had to be carried. Which was easy enough (for me at any rate). And I always love train journeys.
No complaints with the hospital. Incidentally, I read on someone's blog that they don't use alcohol swabs before drawing blood and that they just use cotton wool. In fact the cotton wool is soaked in the antiseptic betadene. So don't worry about that. The hospital is super clean and the standards high.
So, the procedure. The doppler showed that my right jugular vein was significantly narrowed and that there was no blood flow in my left, or at least very little. The blood was by and large stagnant.
I should just point out now that I have a huge phobia of medical procedures but I actually enjoyed this one. I was surprised. They were ballooning my right jugular before I knew it the left was done (it was quite painful,) the azygous reportedly had a fold in it and it was all over just as I was starting to really enjoy myself (I complained of some pain and I think I was given opiates so that could have been it.)
Anyway, here's the problem. I had a partial thrombosis. So clexane twice a day for two months for me with my needle phobia (I shall check this all out with the NHS and try to get a repeat doppler at the same time) and the follow up doppler the day after the procedure - well, there was no flow! Possibly due to the thrombosis! I'll email the Alexandria team and clarify things. I'd like some idea as to why things still aren't flowing - could it be the partial thrombosis? At any rate, both the jugular veins are wide now wheras a week ago the were narrow. I want to find out too whether this fold in the azygous vein could be a likely contender for restenosis.
I haven't really felt any benefits you see, although I wasn't too hopeful given my EDSS. I think that my hands have not been getting stiff when I'm tired, but this is something that I will need to keep an eye on for a week or so just to be sure.
Well, all in all, I wasn't expecting great benefits so I shouldn't be too disappointed, although I am, because I dreamt of standing. However, since there is no blood flowing in my left jugular then maybe, just maybe, these benefits might surprise me one day soon when the thrombosis is cleared. Besides, these things don't always happen overnight..
The main thing is, I've seen with my own eyes that I had venous problems. These venous problems, as you know, are associated with my MS, so I am more than happy to have got them treated. The treatment isn't over yet and I shall let you know what happens. You never know, I may even feel the need to make a video one day..
L wrote:I'd like some idea as to why things still aren't flowing - could it be the partial thrombosis? At any rate, both the jugular veins are wide now wheras a week ago the were narrow. I want to find out too whether this fold in the azygous vein could be a likely contender for restenosis.
CCSVIhusband wrote:Yes they are. Glad they are corrected, though I'm confused as to why there still is no flow? Can I ask, what were your first MS symptoms, when were you diagnosed, how rapidly did you progress at the beginning (it'd be interesting since your flow is so bad).
bunny82 wrote:Hi L,
When I sent you that pm yesterday I had no idea you had the thrombosis - I only checked my messages and sent you a reply but had no time to check out the forums as I had to rush away to see my MS-nurse...
So this is such a shock and I hope you see some improvements ASAP! When you had the follow-up Doppler the following day, was that done by Dr Sinan? Or if not, did you have a chance to talk to him and find out what might be happening exactly?
Also, what about the BBC, were they there in the end?
I'm praying that the thrombosis clears up and you see some improvements soon!
L wrote:CCSVIhusband wrote:Yes they are. Glad they are corrected, though I'm confused as to why there still is no flow? Can I ask, what were your first MS symptoms, when were you diagnosed, how rapidly did you progress at the beginning (it'd be interesting since your flow is so bad).
Of course you can. The first symptom was optic neuritis which never really cleared up, and an isolated bought of weakness in my legs when cycling to the chip shop for my gran. That was seven or eight years ago and today I'm a wheelchair user so it has been pretty aggressive.
L wrote:More information from the Kuwaiti team and some input from doctors here in London will explain everything..
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