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NICE to review surgery for CCSVI

Author: MS Trust

NICE (the National Institute for Health and Clinical Excellence) has announced that it will be considering guidance to the NHS on balloon angioplasty with or without stenting as treatment for CCSVI.

Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory developed by Paolo Zamboni, a vascular surgeon at the University of Ferrara in Italy. His theory is that stenosis (an abnormal narrowing or obstruction) in blood vessels that take blood from the brain allows a build up of iron. This is then able to cross the blood-brain barrier and cause inflammation and damage to cells in the central nervous system, leading to MS symptoms.

It has been proposed that CCSVI can be treated by surgical procedures either by inflating balloons (balloon angioplasty) to open the narrowed veins or by inserting a stent (mesh tube) to support the vein.

A consultation document about the safety and efficacy of the surgical procedures will be issued summer 2011 with a provisional publication date for the final guidance set for the autumn.

NICE announcement
CCSVI - A to Z of MS

User submitted comments

Name: Spud
Comments:
Fell out of bed feeling down. This has brightneed my day!

Name: victoria clarke
Comments:
so important for people with ms that it is looked at without bias.

Name: Khris Martick
Comments:
This will be a 'world shaking event' if the guidance issued makes it possible to access the 'treatment' via the N.H.S...'it's cheap (when compared like for like with similar procedures) its safe (as any angioplasty) it's quick (1-3 hours) it's 'drug free'...and 20,000 that have had 'it' so far have experienced about 2/3 rds good to 'astonishing' reduction and reversal of M.S symptoms. I've been in a wheelchair for 20 years I might get no benefits.. but hey... I'm willing to 'take my chances'..eh ?

Name: Trevor Robinson
Comments:
This is good, I had to go to Serbia to have this Procedure done for my CCSVI I have had MS for 15 years and this Procedure improved my condition better than any Drug could have done My left Jugular was 90% narrowed and the right 25% narrowed I have been a lot better now since October 2010

Name: Mrs Angela Martin
Comments:
I have had this procedure carried out in California in March and really feel this does provide some benefit to people with diseases like MS. It may not be a cure but I sincerely feel, there is a definite link somewhere in the jigsaw puzzle relating to circulation and blood flow. My Physiotherapist was really impressed with the increased circulation and muscle tone in my legs. I cannot afford to have this done again but know at some time in the future, it may be necessary but I am hopeful the next time, it will be available on the NHS which after all, is a cheaper option than drugs.

Name: silverbirch theresa
Comments:
Procedure is safe on MS paitents this was documented by SIR Global Trials results have reported that their is evidance that alot of MSERS have CCSVI and requires further investigation . Enough is enough its got vascular approval and trial results have supported vascular problems. MS Society have a duty and that is to support its members and as it stands their not showing enough support

Name: Lynne Heal
Comments:
Have repeatedly asked for this for 2 years nearly now. interventional vascular radiologists are needed for angioplasty have antedoted lots via parliament also and had one operation last year not clinically trialled so its making no sense as to why no one has done this yet via NHS

Name: Andy
Comments:
Had CCSVI angio (private clinic) last yr, in Edinburgh. Major reduction in symptoms. Not fixed but a damn sight better quality of life.

Name: daisy zoll
Comments:
great news! hope their results come out at least as worthwhile as the modifiers they've backed so far. Just starting to have a conversation with a new GP about getting testing in this area

Name: Jan Salkeld
Comments:
Had CCSVI done in Belgium March this year. Excellent hospital; great improvement in my daily life. This should be available on the NHS. both Jugulars had marked stenosis. Op successful and I was told it wouldn't need to be repeated.

Name: Marion T
Comments:

Looks like things are finally ticking along in the right direction :) However, in my opinion (and that of many others on other sites and forums) one massive downside of the full announcement by NICE is that IPAC (Interventional Procedures Advisory Committee) will base its review on evidence from three professional bodies: the Association of British Neurologists, the British Society of Interventional Radiology and the British Society of Neuroradiology.

..Neurologists are NOT *vascular* experts (CCSVI is a vascular issue, not a neurological one). As one lady said in another forum: "I think the neurologists' role in this area of research should be limited to the monitoring of neurological symptoms. The vascular aspect of the condition should be left to the vascular specialists!"

Interventional Vascular Radiologists are the ideal professional experts to be doing the consultation process, not neuros. Neurological symptoms are the RESULT, not necessarily the cause.

Name: Carole Townsend
Comments:
Comments: Following the procedure in Edinburgh Jan 2011 my walking improved and my brain fog completely disappeared. Now in August I am still improving. Having the treatment has taken away fear; the fear that I am in an inevitable spiral of decline.
I sincerely hope that NICE go for this It could save the NHS millions. The average patient costs £10,000 per annum. It would also give everyone the opportunity I was fortunate enough to be able to buy.