Pioneering surgery for MS clears British woman of disease

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

Pioneering surgery for MS clears British woman of disease

Postby MSUK » Sun Jan 17, 2010 1:09 am

Pioneering surgery for MS clears British woman of disease symptoms http://tinyurl.com/msrc-ccsvi
MS-UK - http://www.ms-uk.org/
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At last!!!!!!!!

Postby Badger » Sun Jan 17, 2010 1:58 am

people or the media are beginning to wake up. Oh well they always say 'GOOD THINGS COME TO THOSE WHO WAIT'
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Postby LR1234 » Sun Jan 17, 2010 3:45 am

MMMMM very exagerated! I don't want to speak for Alex but I wouldn't say she would say she is cured, or that her symptoms have lessened that dramatically.

Plus she went to Dr Dake and not Simka in Poland so the cost was not correct.

However if this means more publicity for CCSVI and more Dr's looking into it then it can't be a bad thing!!!
Last edited by LR1234 on Sun Jan 17, 2010 4:24 am, edited 2 times in total.
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Postby Inge67 » Sun Jan 17, 2010 3:52 am

Hi all,
probably very silly, but the link does not seem to link to an article, but only the page on ccsvi. Or am I missing something?
I am really curious!

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Postby LR1234 » Sun Jan 17, 2010 3:53 am

Pioneering surgery for MS clears British woman of disease symptoms

Alex Gibbs © MDV 2010Doctors believe they have cured a British woman of ­multiple sclerosis after a pioneering operation.

For years sufferers have been told there is no cure for MS, but the apparent success of the surgery has given new hope to those who are battling the disease, which attacks the nervous system.

And Alex Gibbs is so certain she has now beaten the disease that she has even become pregnant – something she would never have dared do before.

Alex, 38, travelled to the United States last June after reading on the internet about the breakthrough procedure, which involves widening the veins.

She contacted surgeons in the UK and asked them to perform the surgery but none would agree.

Alex, from Chelsea, West London, said: “I’ve only had MS since 2004. But I got it really badly right from the start.

“I couldn’t walk more than 300ft without having to stop. I had stiff limbs and muscle spasms through the night in my sleep.

“My future didn’t look very good having such ­severe MS at the outset. Normally it worsens slowly. Within a couple of years I would probably have been in a wheelchair.”

Many ­experts believe MS is caused by a faulty immune system, but a number of ­doctors now believe damage caused to the nervous system in MS is actually from poor blood flow in the chest, neck and head.

One is Italian surgeon Paulo Zamboni, whose solution is to widen the veins using a ­balloon or thin metal tubes. Alex had followed the work of Prof Zamboni, who cured his wife of MS five years ago and has now cured 100 more patients.

As no UK doctors who specialise in MS are prepared to carry out Zamboni’s procedure until further studies are carried out, Alex went to ­California, where a ­surgeon at Stanford ­University was willing to perform the ­procedure.

After the £5,000 op which widened her jugular veins, Alex’s symptoms improved immediately.

Alex – whose mum died of MS at 68 – just months before she was diagnosed, reported back to her MS ­consultant at the National Hospital in London.

She said: “He’s not ­convinced by Zamboni’s research, but he has accepted that my symptoms have ­improved. And the lesions on my brain caused by the MS have not worsened.”

Source: sundaymirror.co.uk © Mirror Group Newspapers 2010 (17/01/10)
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Postby crocky » Sun Jan 17, 2010 3:56 am

Typical British gutter press not letting correct facts get in the way of a good story - however its great that they at least have reported a positive story about ccsvi - this has to increase interest - bit by bit this just has to become mainstream.
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Postby Inge67 » Sun Jan 17, 2010 4:01 am

Thanks! Very quick!

We have had a similar article published on the national newspaper De Telegraaf last Tuesday. It is in Dutch helas!
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Postby CureOrBust » Sun Jan 17, 2010 4:06 am

Inge67 wrote:... but the link does not seem to link to an article, but only the page on ccsvi. Or am I missing something?
I am really curious!
The link leads to a BIG page on CCSVI containing many articles on CCSVI. The one spoken of is one of them. Just search within the page for "Gibbs".

PS: squiffy2, is there any reason you used TinyUrl? hiding the URL can reduce its possibility of a higher rank in google I think.
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2944
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Postby Ernst » Sun Jan 17, 2010 8:00 am

Good press article and very happy to hear that Alex is doing very good. I put the link in Finnish forum too. Wonderflu Alex, just wonderful.
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Sunday Mirror Article

Postby MarkW » Sun Jan 17, 2010 8:20 am

I am amazed at myself but here is a link to the London Sunday Mirror article (you may need to cut and paste it). Yes it is a tabloid paper (ie not read by neurologists) but this is good publicity and has a vital question mark in the title.

www.mirror.co.uk/news/top-stories/2010/ ... -21973347/

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Sunday mirror/msrc

Postby Dovechick » Sun Jan 17, 2010 10:54 am

I saw the article on MSRC and Sunday mirror, same story same words. Bodge_it opined that it was written by a 5 year old... But of course it does not matter because any publicity is good publicity.
Here is the MSRC link

http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2479
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Postby MSUK » Mon Jan 18, 2010 2:23 am

CureOrBust wrote:
Inge67 wrote:... but the link does not seem to link to an article, but only the page on ccsvi. Or am I missing something?
I am really curious!
The link leads to a BIG page on CCSVI containing many articles on CCSVI. The one spoken of is one of them. Just search within the page for "Gibbs".

PS: squiffy2, is there any reason you used TinyUrl? hiding the URL can reduce its possibility of a higher rank in google I think.
http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=2944


I use the tinyURL for Twitter and Facebook, and just use it everywhere else, but you are right, hadn't thought of the Google Ranking issue, thanks :P

Yes, sorry the link goes to the main MSRC CCSVI research page at present, this has all taken off so quick that it has rolled over the"usual" MSRC website way of doing things! :lol: I will be re-organising the CCSVI page into a whole CCSVI section on the website this week (once our monthly newsletter has gone to press 8O )

As some have said, the story is VERY Press related and they never let the truth get in the way of a good story! BUT it is main-stream publicity and will raise public awarness of CCSVI etc. As usual at MSRC we will continue to report totally unbiased news on CCSVI and any other MS-related subject, and hope that people are able to sort the wheat from the chaff with regards news posts.

squiffs :)
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Postby gibbledygook » Mon Jan 18, 2010 4:18 am

What I liked about the article was our complaint about the lack of doctor interest in the UK; "She contacted surgeons in the UK and asked them to perform the surgery but none would agree." At least our complaints are making the tabloids!!
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 LR1234 » Mon Jan 18, 2010 4:38 am

Yes GG I agree! The more publicity, the more support hopefully. Liking the brown hair :wink:
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Postby kjwxau » Tue Jan 19, 2010 12:00 pm

I live in s of Buffalo and yesterday our local news chanel gave the opporunity for 45 minutes question and answer session via the web with a previous head of our largest county hospital. I typed in what do you think of CCSVI theory. Since it was on live video I watched him read my question and then try to search for it via his laptop. By his response it seemed like he was interested in it. But he also hand not heard about it. I typed in it was being done at the Jacobs/UB facility. I figure it is just one more professional in the Buffalo area that will not be complely in the dark about what is going on in his own backyard. Kim
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