2 days to go/the BBC

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

2 days to go/the BBC

Postby L » Sat Nov 27, 2010 3:15 pm

Not long for Alexandria!

I have met a few fellow travellers on Facebook. Karen is having a small BBC film crew following her experiences. I'm a bit camera shy and my girlfriend has told a tall story to her boss regarding her absence so I hope to keep out of shot..

Pretty good though. The BBC. I shall have to find out for which program it is being filmed.
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Postby Bear2 » Sat Nov 27, 2010 3:38 pm

Good Luck on your trip.

I would like to see that BBC report/show.

Jim
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Postby Cece » Sat Nov 27, 2010 4:26 pm

I'll be watching that too when it comes out.

Good luck and best wishes on your treatment, L.
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Postby L » Sun Nov 28, 2010 9:40 am

Thanks Cece + Jim !
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Postby bunny82 » Mon Nov 29, 2010 5:06 am

My very best wishes on your treatment, L! And thank you so much for all the info you shared with us so far (I have just been watching the videos you uploaded). It's your turn now and we wish you all the luck in the world!

And what a crying shame: in an ideal world your girlfriend shouldn't need any tall stories to be able to go with you, it's not right this way...
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Postby Coolcatcarrie » Mon Nov 29, 2010 5:47 am

Best wishes L! - You lucky thing! - in a nice time from crimbo too!!! :D
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Postby L » Sun Dec 05, 2010 1:53 pm

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..
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Postby Johnson » Sun Dec 05, 2010 2:28 pm

Good on you L. I hope that the benefits start to show soon enough.

Thanks for your report.
My name is not really Johnson. MSed up since 1993
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Postby CCSVIhusband » Sun Dec 05, 2010 3:14 pm

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..


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).
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Postby bunny82 » Tue Dec 07, 2010 3:06 am

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.


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!
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Postby L » Tue Dec 07, 2010 4:54 am

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.

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!


Thanks very much bunny! I'm confident that the thrombosis will pass sooner or later but whether that will resolve the flow I don't know.. More information from the Kuwaiti team and some input from doctors here in London will explain everything.. As for the BBC, I know that they were to be at the Louran hospital with Karen the following day. Can't tell you what show they were working on or when it's to be aired though..
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Postby CCSVIhusband » Tue Dec 07, 2010 5:56 am

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.



So pretty bad blood flow (CCSVI) ... pretty aggressive course of MS ...

interesting ... VERY interesting.


CCSVI (*) degree of severity of CCSVI (*) time = severity of MS

100% * 9 (out of 10) * 7 years = aggressive MS


often times the simplest solution is the right solution.

Thanks for your response L

I guess the equation is redundant when you think about it, but ... but I'm trying to give a simple math lesson. Besides, it's all going to work out in the near future (and it'll come from doctors, not simple engineers good at math).

Obviously this equation isn't going to be the equation for ALL patients ... certainly there are probably ways to get MS that aren't CCSVI related ... but so far it seems to work for MOST patients. (and as we've been reminded, there's no ALL in science).

Like:
you can't say ALL humans are men OR women.
you can't say ALL cats are born with one head.
you can't say ALL water is H2O

but you can say MOST ... :wink:
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Postby Cece » Tue Dec 07, 2010 8:25 am

L wrote:More information from the Kuwaiti team and some input from doctors here in London will explain everything..

Let us know what input they have, will you? Clexane is to keep it from clotting worse, it may or may not break up on its own. With it being such an immediate thrombosis, that reminds me of what happened with bestadmom. Thrombolysis and repeat venoplasties might be options, both have their risks.

If one vein is open and flowing well, that is considerably better than none, but fingers crossed that the other one can get there as well.

Thank you for sharing your report, it sounds like a great experience overall. I will probably worry until there is good news about that thrombolysis though! Are you in touch with LR1234? Whoever she had for UK doctors, it sounded like they did a good job saving her life, no hyperbole there. Granted her post-venoplasty complications were much worse than you're describing.
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