CCSVI in U.K?

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

CCSVI in U.K?

Postby wonky1 » Fri Oct 09, 2009 8:03 am

Please point me in the right direction.
After having PPMS since '97 I'm really stirred up by this new discovery.
Please give any advice you can regards how I can have this investigated and if necessary treated in the U.K.
I am seeing my G.P. next week and will try my best to get her interested in it.
I will be taking along prints of the documents recommended by http://csvi-ms.net but those documents seem more geared to Vascular or Neuro' specialists.
Can any one recommend something to catch a G.P's interest?
I don't expect the local Neurologist will be interested. He is a generalist and not an M.S. specialist.
Does any one know of a Neuro' or Vascular surgeon who is up to date on this in the U.K ?

Thanks for any help you can give.
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Postby LR1234 » Fri Oct 09, 2009 12:36 pm

Hi Wonky,
There are a couple of us in the U.K (me and Gibbledygook) and we have had major issues trying to get tested here. I have been seen by a couple of vascular specialists who thankfully agreed to do the testing but they were unable to confirm Dr Dake's findings (after I had sent him my scans to report on). Gibbledygook went to Stanford to be treated in the end, I cannot afford to go there. I am planning to maybe go to Poland. There is a dr called Dr Simka who is also going to start treating people and I plan to go and see him. You might be lucky and find a dr to do the testing here but you won't find a dr to treat (not yet anyway)

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treatment of CCSVI in UK

Postby GiCi » Sat Oct 10, 2009 5:29 am

I will probably be the first patient to undergo a liberation procedure in UK scheduled for the 14th of October 2009.
I was able to persuade a vascular surgeon to read Zamboni's papers and to study the images of the balloon angioplasty of my jugular veins done in Ferrara nearly three years ago. I explained to him that a recent doppler study done in Ferrara showed re-occurrence of stenosis expecially of the right jugular and that I felt a slight deterioration of my condition.
He discussed the issue with a radiologist who accepted to perform a venogram and possible dilatation.
I will you keep posted regarding the result of the procedure, which I hope will move the waters in UK.
GiCi
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Postby Sharon » Sat Oct 10, 2009 5:57 am

Gi Ci -

Are you having the balloon procedure again? Are you able to find anyone in the UK to use the stents?

October 14th is next week - good luck and let us know how you are doing.

Sharon
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Postby LR1234 » Sat Oct 10, 2009 7:32 am

Great news Gici. I have found so far that the dr's I have spoken to don't want to get too deep into it as it is very unchartered waters. Hopefully once your surgeon gets the ball rolling by treating you then maybe more surgeons will feel confident enough to perform the procedure.
(I bet your your surgeon is someone I have spoken to already :wink:

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Postby gibbledygook » Sat Oct 10, 2009 7:51 am

Good luck GiCi, that's fabulous that you've managed to find a UK specialist even to consider surgery. I guess having had it done already means that they feel comfortable redoing it. My experience of UK vascular specialists has been absolutely dreadful.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby wonky1 » Sat Oct 10, 2009 12:17 pm

Hello GiCi

That's wonderful news.
Can you give me the names and details of the vascular surgeon and radiologist please.
I am at the very start of this and it would be a tremendous head start if I could point to your successes.
Having found out about this very recently, I feel that every passing day that I and everyone else with M.S. goes without treatment, is a day of unnecessary progression.
Hopefully your specialist's will be setting a precedent that will be hard for others to ignore.
Best wishes for the procedure's

Thank you.

Wonky.
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Postby mrhodes40 » Sat Oct 10, 2009 12:59 pm

Gici I will think of you on the 14th! I am going to try a bioness that day so I will remember your surgery too...The best of luck to you I wish you well....for every one's sake!

Excellent job finding someone to listen, of course it probably helps that your are a cardiologist and already had the operation once..........it eliminates the question of whether or not you really understand what you are asking. :?
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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procedure in UK

Postby GiCi » Sun Oct 11, 2009 4:22 am

Thank you all for the expressions of support and the good wishes.
I will report back following the procedure (balloon dilatation, not stents) and I will then release the details of the professionals involved.
GiCi
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Postby ErikaSlovakia » Sun Oct 11, 2009 7:59 am

Good luck GiCi!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby AMO » Mon Oct 12, 2009 6:30 am

GiCi hope everything goes well on the 14th... Can I ask for a favor can you provide me with the info of the dr. and which city and all the info please ;)
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liberation procedure in UK

Postby GiCi » Mon Oct 12, 2009 7:31 am

Amo, Please read my previous message in which I said that I will supply details only after the procedure.
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Postby AMO » Mon Oct 12, 2009 1:29 pm

Thanks for your reply wish you all the best and i will be praying for you. Keep us posted
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Postby acol » Tue Oct 13, 2009 8:37 am

Hi GiCi

I too will be keeping my fingers crossed that everything works out well for you tomorrow.

Hi Wonky1

I was alerted to CCSVI following an article that appeared in this month's Pathways magazine. I was diagnosed with MS about 17 years ago - doesn't time fly when you are enjoying yourself! Over the years I have seen so many false dawns and as a consequence don't get overly excited when a new development gets publicity. However, CCSVI appears different - sufficient to get me excited and explore the possibility of trying to get the 'liberation' procedure.
Nigel
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