CCSVI - An Anecdote

Everyday living
1

There has been a fair bit of discussion recently concerning CCSVI and thought I should declare my experience of the procedure, on 20 June 2012. For background information, I was diagnosed with PPMS in 1998 and probably about 6 on the EDSS scale.

Having satisfied myself that CCSVI is acceptably safe (or if you prefer, confront the prospect of near certain death head on), I decided that the only way of finding out if there was any truth in the claims was to actually have the procedure. Being a long term PPMSer, I had no wild (or any other type) expectation of improvement.

I chose a hospital in Belgium for the following reasons:

The operation would be carried out by a vascular surgeon.

A high pressure balloon would be used, which is claimed to reduce the chance of restenosis to virtually nil.

Stents were only used in emergencies and I did not want something designed for arteries under any other circumstances.

Bruges is a fantastic medieval city and easily reached by Eurostar. Not flying seemed a sensible precaution.

The waiting list was low.

My secretary meticulously arranged for assistance at every stage of the journey and this undoubtedly made the whole trip effortless from my point of view. The only complaint was a certain reluctance to help check the benefits of improved blood flow, but this is a small matter.

The scans revealed a slow flow in the left jugular with some reflux, which was probably caused by a faulty valve. The correcting procedure was scheduled for the next day.

I was told improvements tend to take a few weeks to notice, but my left foot was pleasingly hot on waking up following the procedure, which was freezing (and grey) just an hour earlier, as commented on by a nurse. A handily placed bedside doctor carried out a hot foot test and confirmed this fact, so not my imagination. Since then spasm and cramp have virtually stopped and balance seems a bit better, but nothing else of any note. To be honest, I really wasn’t expecting much and will be very happy if these welcome improvements are maintained.
So there you have it, another meaningless anecdote, but one with still warm extremities. Does this mean that better blood flow is a good idea, regardless of MS? Probably in my view, but hopefully the trials will provide more valuable conclusions.

Oh, and the cost was £4250, in case that is relevant.

2

Now - Whammel - l am so pleased that another person ‘in our gang’ - has taking the big step and gone for this treatment. As you probably remember from previous posts - my daughter and friends have been trying to get me to do the same as she does know of someone who had the ccsvi procedure done about 3yrs ago- and had instant good results - and still does. This person is much younger then me and has RRMS - for 7yrs. The radiologist l saw - in UK- said that the best results were on people who were fairly newly diagnosed. And - like you were told- improvements would be gradual.

All the best to you - and l do so hope that your symptoms do keep on improving.

Francesx

3

Excellent news,and may the improvements continue.I reckon from my point of view the train is easier than the plane and as soon as the money materialises,“Bruges here I come”.

Thanks very much,

Wb

4

[quote=“woblyboy”]

Excellent news,and may the improvements continue.I reckon from my point of view the train is easier than the plane and as soon as the money materialises,“Bruges here I come”.

Thanks very much,

Wb

[/quote] Steve- do you think we could arrange a ‘group discount’ ?

5

Oh D, you dark horse. I’m very glad you had improvements. I hope they persist and I’m also really glad the price was realistic. Is your balance still improved?

the usual best ((((mwah))))

K x

6

I’ve just spoken to the clinic in Bruges, and THEY HAVE BEEN SHUT DOWN BY THE US FEDERAL DRUGS ADMINISTRATION. All clinics throughout Europe have also been shut down.There where moves made in may initially,but Bruges stopped proceedures two weeks ago.

There is much conjecture as to why why the US FDA can hold sway over clinics in Europe.There is a very simple answer.

Wb

7

Excellent news, I have heard reports that this clinic believe they have now perfected the procedure such that it will not be need to be repeated. Were you told that? i.e. are the reports of the permanent fix true.

I personally think CCSVI should be regarded as a separate condition at present, time will tell what of if it has any relationship with MS.

What matters to patients is results, if CCSVI can be treated in someone who happens also to have a diagnosis and they get symptom improvement as a result who cares except some academic in a back room who maybe has neither MS or CCSVI.

8

Well said 603,just a real shame that we cannot have the chance to see if Liberation helps.If there is no audible outcry from the clinics it might be sometime never that the FDA decrees we can have that chance.

Wb

9

Hi Whammel and Thank you for your bravery in putting your life on tjhe line to be our very own anecdotal guniea pig in this contentious matter. For your sake I sincerely hope that you continue to see improvements or at least maintain warm and cuddly toes

David, while in no way wanting to detract from Whammel’s heroic gesture and while sincerely wishing him the best I do wish you would keep up to date with research. CCSVI in YOUR opinion might be regarded as a separate condition but the research is not bearing this out. In fact the numerous studies currently being carried out globally tend to be showing that CCSVI is a nonentity and the so-called narrowing or stenosis of the veins is due to a perfectly normal anatomical variation found in all humans. Of course these results are still preliminary but Zamboni’s original study has still not been duplicated and the whole theory is looking less and less viable whether in relation to MS or as a separate entity at all.

“Determining CCSVI by ECD (Echo Colour Doppler) is unreliable because of the fluctuating natural course of the extracranial venous haemodynamics”

A prospective follow-up of the venous haemodynamics in patients with MS: the fluctuating natural course of CCSVIL.H. Visser, L. van den Berg, A. van der Zande, G. van den Berg, B. Westerhuis (Tilburg, Maassluis, NL)

http://multiple-sclerosis-research.blogspot.com.au/2012/10/ccsvi-not-compelling-evidence-for.html

“Thirteen of the 21 abstracts were ultrasound studies and predictably were negative, inconclusive, and/or repetitive. I think we have all learned that ultrasound is not able to provide diagnostic criteria for the hypothesis of chronic cerebro-spinal venous insufficiency.”

Again, all the best Whammel and sorry for semi-hijacking here

Belinda

10

Hi Wb,

There needn’t be any conjecture about why the FDA holds sway over clinics in Europe. It is very simple. If the clinics are using devices that haven’t been approved for placement in veins and have never been placed in these veins before they automatically fall into an experimental category. Therefore the FDA has the jurisdiction over USA manufactured medical devices to ensure that they are used for the purposes for which they are designed and have been approved WHEREVER in the world they may end up being used. Maybe the Brussells clininc and other European clinics chose to shut in light of this all though I can find nothing in Google to suggest there has been any widesread closure of CCSVI clinics at all.

The moves in May you refer to was an FDA safety communication regarding CCSVI and Liberation Treatment.

http://www.fda.gov/MedicalDevices/Safety/AlertsandNotices/ucm303318.htm

Cheers,

Belinda

11

Hi

i had the procedure in 2010 in edinburgh and i had fantastic results. unfortunately i couldn’t stop myself from showing off

“look at me! i can stand on one leg!!” very impressive considering that i was struggling to stand on two legs before.

the showing off caught up with me and i had a HUUUUGE bout of fatigue. serves me right.

but on the whole myself and my husband agree that i am still better than i was before the procedure.

if you can afford it, i say “go for it”

carole x

12

Oh, I Iol’d. Just like you, who has neither MS or CCSVI and yet, feels somehow duty bound to open our minds, us poor ignorant, ill-educated, idiots with MS.

13

I think your comment that the best results are on the newly diagnosed is spot on, at least anecdotally speaking. The results are far too mixed for me to recommend the treatment and I am not expecting any further improvements, but worth considering depending on your circumstances.

14

I always intended coming clean with the results, honest (good or bad), but thought I should wait at least three months first. My balance is still slightly better and the foot is now warm rather than hot, so nothing miraculous, but worth it in my view.

It’s certainly better than wondering “what if” and another thing crossed off the list.

15

Sorry to hear they have been closed down, although there was some talk of moving the operation to Brussels, so may be worth keeping in touch.

16

I was told that a high pressure balloon prevents restenosis and it is also stated on their website. My condition doesn’t appear to have changed much after the first week, so could be true.

17

Dear Belinda,the clinics aren’t using stents manufactured in the US or anywhere else.There must be another reason why the US FDA has stopped clinics in Europe performing the Liberation procedure.Personally it was my final slim chance of not spending the rest of my life in terrible pain.

Wb

18

Hi Wb,

Maybe I didn’t explain it properly.

The clinics may not be using stents but they ARE using balloons or else how can the procedure be done?

Basically balloons are deemed to be experimental, as they haven’t been used in veins in this manner or for this disease before. The FDA has the right/obligation under the UN and WHO protocols into clinical trials to ensure safety guidelines are met and that people are making informed consent. To this end they released their Safety Guidelines in May and therefore theoretically if clinics anywhere in the world aren’t adhering to those guidelines the FDA COULD step in and stop the procedure being done. It has certainly happened in America except that the Dr in question ‘voluntarily’ suspended Liberation Treatments after being requested to by the FDA.

Hope this clarifies it.

Are you sure ALL clinics have closed down? I would have expected an enourmous amount of posts on Facebook and other CCSVI Forums if this was the case. If you really want to go ahead and have the procedure done it may still be available. And if you are looking at it primarily for pain relief have you asked your Dr about Ketamine infusions? Bloody brilliant.

Belinda

19

Thank you for your stirring message and I like the way you are thinking there. I strongly doubt there will be any further improvements, because I have had MS too long, but freezing cold feet are pretty miserable and much prefer the warmer version.

20

Glad to hear you are holding on to some improvement and hope the blood is still flowing well. While I think the procedure is safe, I really don’t want to go through it again.