Interestingly, the Privatescan group are offering treatment in Bruges - this month, and in Nov and Dec - and using the words No Waiting List.
There are German and Polish clinics offering the treatment right now. Last time I visited, Germany and Poland were in Europe
There are two clinics in Southern California offering the treatment right now. California comes directly under the FDA.
One can only speculate as to why Wb was told of a total closedown, but a call to the Privatescan Head Office on
+31 074 255 26 80
(that’s in Hengelo) could perhaps clear the matter up.
Pleased to read of your experince with Venoplasty of your Cerebral Veins, I have had 3, first in Nov 2010, which afforded me some amazing relief from many symptoms which are within the sphere of ‘ms’ . Unfortunately for some restenosis is an issue, so needing further treatments. or perhaps more invasive therapy. Nicoletti Mantovani wife of Pavorotti, is one who has had this experience, she had a failed venoplasty, she had a muscle compressing her jugular vein, which has been released. She describes herself a woman reborn the news is all over the newspapers in Italy. I have varoius images an MRI of my veins using contrast which shows clearly my left internal jugular vein has severally restricted blood flow. DVD with images of dopplar scans and 3 of my Venoplasties, they all show a very similiar picture. But all the Drs I have shown them to in the Uk shake the head and dismiss not in this clinic, not in the UK. Yet we can travel to Belgium or Germany or Poland or Bulgaria for this simple procedure, bring back the evidence but get no hearing.
Hi, really pleased to hear that you have some improvement, particularly interested to hear that there was improvement with your balance, balance has always been my worst symptom… I think if I was newly diagnosed I would very seriously consider giving ccsvi a go but I’ve had ms for years and as you and others have said it might work better in the newly diagnosed. Thanks for sharing this. Cheryl:-)
Glad this thread came back to the top. Been looking for people who went for this treatment, to write first hand experiance of the op. The only reviews do seem to be from people pushing the idea. Its great that they found a prob (left jugular) that they could correct. Be nice to see if you continue with your progress. Hopefully so!
Whilst I am glad for your improvements, you are hijacking Derek’s thread, which isn’t very fair to him. Lots of us have met Derek and know him, but to be honest, you could be anyone.
He’s already written that he has no wish to repeat the procedure. Most of us can’t afford treatment or don’t want the risk. I personally won’t take that risk and other anecdotes are just that.
If you start a new thread- telling us how you are now, rather than telling us what you had, then that would be more interesting.
I am new to posting here so apologies if it is in the wrong place.
Having read the posts on CCSVI treatment, I would like to add my own.
PPMS diagnosed 1995, F/T wheelchair, EDSS 8. I had CCSVI treatment in Poland October 2010 and experienced immediate relief of many symptoms. Returned Oct 2012 for a check-up, everything still flowing well, no more CCSVI to treat.
Changes - no more slurred speech, blurred vision, cog-fog, fatigue, pain, swallowing difficulties, headaches, etc. Now I have upper body strength, can do up buttons, feel, taste, see, keep up with conversations … in fact I AM BACK. The only thing not to return was mobility and my feet are still freezing. I started an intense programme of physiotherapy 6 weeks ago which is helping a lot.
The procedure is daily routine for other conditions, has been used for years in heart operations, lasted half an hour, and wasn’t as bad as going to the Dentists.
I would encourage pwMS, and certainly those newly-diagnosed, to at least get tested to see if they have CCSVI. The nearest place to test for those in the UK is Dublin I believe who do tests but not treatment.
I’m very happy for you that you are feeling better but…
Why not start your own thread? This is Derek’s account.
You have PPMS as well - so it’s good for people who have PPMS to read about positive results.
What troubles me with CCSVI treatment is that it isn’t the same as angioplasty for blocked arteries - this is opening veins, which are quite different. I don’t want to take the risk of having messed up veins - people have had to have vein transplants after too much venoplasty (CCSVI treatment).
Veins aren’t as elastic as arteries. There are some very serious risks with this procedure and it costs an enormous amount of money. If I had PPMS and was younger, I’d be tested.
So sorry, not used to this forum, so stealing the thread thing, is it rude of me, or even creating a new I don’t know ? Found the link, when doing a web search re Brussels ‘Privatescan’, read the comments above and replied. Silly old thing, going on 57 this computer savey stuff is a perpetual learning curve. Every in boxes, catalogued and filed. Best wishes to anyone who is looking for answers, hope we all find somethings to help. A cool reception probably means I will not venture in here again.
I also have had the CCSVI procedure in August 2011. I had 1 vein on right side 1 in the centre and 3 on left side, but no change. When I went to Edinburgh I was in my W/C but could walk round with my stick. But since December I walk indoors with a 4 wheel walker and use my W/C or electric buggy to get around outdoors. I went back in April 2012 for check up only to find my veins had gone back to normal, and my mobility worse than before. I have PPMS dx in Jan 2011. I find everyday things I used to do I can’t anymore. Struggle with balance and fatigue. So I would think before you go ahead with the CCSVI. The cost in Edinburgh is £8000
So happy to hear of your positive results whammel - I’ve had the treatment 3 times now - constant re stenosis probs so on anti biotic therapy against cpn - also have tremors in my legs when standing, not touched by ccsvi treatment - was told by surgeon that this was not vascular issue. so am looking elsewhere again - now SPMS, diagnosed 2000, rrms then things got worse!
I really do not believe the FDA have any concern for safety over his procedure - its all about money and until big pharma can produce something that works on progressive ms, then, yes they are threatened by ccsvi. certainly in those countries which don’t have nhs to provided drugs.
Anyway, havent been allowed to post on here re ccsvi for years, well done admin for allowing us this at least - keep well or do your best trying, love Suzanne