Bucket of Cold Water from National Hospital doctor

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

Bucket of Cold Water from National Hospital doctor

Postby debbie8067 » Wed Nov 25, 2009 6:41 am

Hey lovely people
I've been around here for years and would really love some advice...
During an appt for a higher dose of Baclofen in my 6month old Baclofen pump (pretty useless so far),I asked her opinion on CCSVI.
She gave mr the usual "doctorspeak"reply saying that nothing was proven,much more research needed,would say don't do anything at all etc,etc.
She did however promise to speak to speak to other MS specialists and ask their opinion,and very quickly sent me a copy of a conversation between two of them:

" Yes.there's a real media frenzy.
We heard Robert Zivadinov at Queen Square yesterday.Personally,I think the evidence so far is not convincing.This concept is rather crude(iron deposition as a reult of extravasation of erythrocytes,just like in varicose veins-really? there is no evidence for raised intracranial pressure or higher incidence of sinus venous thrombosis in MS,which both should be expected. Any suggestion for an animal model to study the mechanism?
How does CCSVI fit with epidemiological data, eg,the difference of incidence of MS when moving from high to low incidence (and vice versa) before/after puberty,and so on ........
Anyway,we'll keep an open,yet scientifically rigorous mind.
More evidence is needed.
BTW,according to Robert,two patients with MS California have died from complications during a venous "liberation procedure".
These are very(very!) concerning developments........."

So,back to square one there then......
I am quite anxious to have an MRI done asap. Should I approach my GP to get a referal,or just approach my local private hopspital and ask for one??
I'm prepared to travel for the surgery(N.Ireland?)as I have been diagnosed since '89 and SP since 2002. It was very benign for the first 12-13 years and am now wheelchair bound,so I'm not expecting to run a marathon,but to halt the progression would be eveything.My father died from MS aged 62 in 2003,I have no optic,fatigue or "fog" problems.
Having been a trained actress,singer and dancer,being still all day is almost unbearable.
I live in London with my incredible husband and two teenage sons and would love any advice at all...
You're all amazing,brave and strong-they won't be able to hold back the floodgates much longer.....
Debbie
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Postby Algis » Wed Nov 25, 2009 6:53 am

The real answer will certainly come Debbie :)

Meanwhile I admire you for your persistence and courage. I thought to be a kind'O'Veteran with 11 years including 6 in a WC but you give me even more strength.

My admiration goes to your Husband and Sons too; MS is a disaster for everybody in a family. For the one who has it; to feel so powerless; and for the ones that love him/her to feel so... powerless...

Be well and Cheers!

Algis
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Re: Bucket of Cold Water from National Hospital doctor

Postby cah » Wed Nov 25, 2009 7:37 am

Hello Debbie,

I'm sorry that I can't help you more then sending my warmest thoughts and hopes to you. If you want to be treated as soon as possible, you could try to make an appointment to Dr. Simka in poland. As far as I know, he is the only one in europe who diagnoses and treats CCSVI in europe at present. But I think he's quite occupied now.

debbie8067 wrote:BTW,according to Robert,two patients with MS California have died from complications during a venous "liberation procedure".
These are very(very!) concerning developments........."


Haven't heard of this yet! 8O Where does this info come from? There are so many disputants of the treatment out there, if there was any evidence to that they would have propagated this over and over again! And by no means I can imagine how someone could die DURING stenting or ballooning. We really should be anxious about such "droppings", they tend to be spread through the internet whether they are bullshit or not. (In some CCSVI-Threads in german MS-Forums, a report is cited again and again which tells that a study about the outcome of stenting was massively influenced by a stent inventor and manufacturer. Well, that might be true - except that this study was on stenting arteries evaluating with other treatment of cartodid stenosis (which, of course, isn't mentioned in the posts). :x

Don't lose heart!

Cah
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