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Timetable for NICE guidance on CCSVI

Author: MS Trust

NICE (the National Institute for Health and Clinical Excellence) has announced the timetable for its guidance on treatment for CCSVI.

Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory that stenosis (an abnormal narrowing or obstruction) in blood vessels can 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 to open the narrowed veins by inflating balloons (balloon angioplasty) or by inserting a stent (mesh tube) to support the vein.

The NICE Interventional Procedure Programme is about to start and as a stakeholder in this guidance the MS Trust has been given the following summary of the schedule:

  • 14 July 2011
    First Interventional Procedures Advisory Committee (IPAC) meeting
    The evidence will be discussed and provisional recommendations drafted
  • 24 August - 21 September 2011
    Consultation on the draft recommendations
  • 10 November 2011
    Second IPAC meeting
    The committee will consider the consultation comments and make changes to the guidance if necessary

People with MS have been very interested in the CCSVI procedure and we are pleased to see that NICE is going to review all the data and make some recommendations.

Pam Macfarlane, Chief Executive of the MS Trust
NICE website
CCSVI in the A to Z of MS
NICE in the A to Z of MS

User submitted comments

Name: Lynne Heal
Comments:
After speaking to someone from NICE last year, who said CCSVI would never be done ever via NHS this is still not being done and I have not had any clear signs it will ever happen. Everyone is so negative towards it to us all with MS, its unbeleivable.

Name: CCSVI ??? or just plain shoot me, not really, just hang tight!
Comments:
This AM I am going to meet w/ Dr Daniel Bendari , I already know HIM; he i one of my doctors. He is verrry nice and I trust him.What have I discovered?
1. my father recently had a heart attazck.
2. He ended up dying at home in front of only me. It was a peaceful passing. I saw him take his last breath. HE DIED;
3. the hospice nurse cme in and he died.
4. I'm NOT afraid of death. My father just reminded me how peaceful it can be.

Name: Bob Baldock
Comments:
I submitted this to NICE as a topic for consultation in June 2010. I am pleased to see the timetable outlined above and hope for a positive outcome. Is there any influence the MS Trust could offer in urging NICE to consider in their evidence reports, research and evidence from eminent international vascular surgeons and radiologists experienced in this procedure. I am referring to the likes of Drs Hubbard, Dake, Haacke (pronounced Hay - kee), Simka, Petrov, Sinan, Zivadinoff and others. Also I would urge everyone with an interest in this to ensure they participate in the public consultation later this summer. Especially all of those who have had the treatment and can add valid constructive comments good or bad. And thank you for posting this article for the information of the MS community. Bob

Name: Paul D
Comments:
I have had CCSVI Treatment, and am anxious to find out if safe stents can be inserted, without them migrating through the blood-stream. If this becomes possible, countless people's lives will be improved GREATLY.

Name: M.Johnston
Comments:
Only last week I was told by Neurology that CCSVI was "witch doctory!!" and was not to be taken seriously, even though I quoted the MS trust article of 2-3 weeks ago. This does not inspire me with confidence given the appaling experience I had in Essex

Name: Tim M
Comments:
I do not understand the concerns of the neurologists, if your blood is not circulating then get it fixed. I have a diagnosis, Zamboni protocol type B (significant stenoses of both Internal Jugular Veins and the Proximal Azygous). Angioplasty certainly would certainly be helpful, if not a remedy, my concern is that re-stenoses seem to be very frequent and to occur quite quickly. So there is a real need to develop new stents of correct lengths and diameters, and that do not risk moving once placed. Another alternative is surgery, cutting out the stenosi and stitching the vein ends back together, or replacing lengths of vein. I do think that the correct approach should be Eccocolordoppler diagnosis first (Zamboni Protocol), then Angioplasty surgical review, then neurologist. Get the blood flowing!

Name: cyndi tunstead
Comments:
I had a balloon angioplasty at Sophia last Nov. no miracles but the improvements in sleep and bladder are enough to convince me it works and that more could be done.with further treatments.

Name: Tracey
Comments:
This treatment needs to be available on the NHS. If you have ms or not. As ms is a complexed illness then you will get mixed results. When you have a dopplar scan and you have damaged veins then you should be treated straight away. Why should i suffer anymore with no quality of life. This is the only test that has come through positive. But the only way to get treated in the UK is to pay £8000 in Scotland. I have as much rights as anybody else to live a normal life.............I will stop there but really i have so much to write. :-(((((

Name: James
Comments:
I am sure that CCSVI is not the cause of MS. So by allmeans if anything can be done to aleviate symptoms then go for it, but in terms of money let the over insured americans find out if this is nonsense. The problem is getting an unbiassed, (un-clouded by money) view.

Name: M.Johnston
Comments:
After posting my comments last week, I decided to look again today at other posted comments. This condition is frustrating enough without the negativity shown uniformly amongst Nerologists? There is no valid reason for this other than MS being re catogorised as a vascular condition or pure fiscal reasons? Perhaps these well educated people are closed minded as they specalise in just one area and do not want to see their efforts critisised by the results of a different medical area... Veinologists. All we want at this stage is some releif from symptoms on the way to eventualy finding a cure.

Name: Vance Jochim
Comments:
I am a yank (aka overinsured american per James) and write the CCSVIUSA Facebook page. My online research of patient and doctor videos and blog postings indicate here in the US, only about 5-10 doctors, mostly interventional radiologists, can talk about all the conditions that cause restenosing. Causes include using balloons that are too small (defined as not being aggressive), not treating valves in the veins that may need “valvuplolasty” (also known as a “stenotic or stiff valve” and mostly related to arterial valves) which may be causing some restenosing, not knowing where to place stents, not knowing which brand or type of stent to use in veins (since stents were designed for arteries, not veins) not having a proper CCSVI protocol diagnosis, or not knowing how to "snake" a catheter around some irregular bends in veins, etc. There is one US clinic that claims a 1% complication rate now, and others may be at that level, but the information is fragmented. Best bet is to find an interventional radiologist who has treated 100-300 patients and also attends the various CCSVI specific conferences to share and learn more. Unfortunately, since Canada, Australia and UK government health systems don’t provide CCSVI treatment now, their doctors will be the last to learn how to do it well.