Post if CCSVI treatment did NOT work for you

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

Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Tue Oct 16, 2012 2:09 am

Alas, after my injection of beta interferon the improvements in spasticity vanished and I'm back to being much worse than I was before both angioplasties...I guess the whole venous pathology is a lot more complex than at first it seems.
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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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Wed Oct 31, 2012 1:43 am

So I have started a course of oral steroids, 500mg of methlyprednisolone for 5 days to damp down the inflammation of a likely thoracic spinal lesion. The neurologist was quite vocal about the positioning of the inflamed lesion. She was an Ozzie so perhaps greater emphasis is placed there on the source of neurological damage. At any rate it is interesting that a thoracic lesion is so close to the azygous areas which Professor Sclafani ballooned and with the left renal stent altered haemodynamically.

Typically my right leg is stiffer than ever. I return to avonex on Sunday...
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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Re: Post if CCSVI treatment did NOT work for you

Postby centenarian100 » Tue Feb 25, 2014 7:23 pm

gibbledygook wrote:Alas, after my injection of beta interferon the improvements in spasticity vanished and I'm back to being much worse than I was before both angioplasties...I guess the whole venous pathology is a lot more complex than at first it seems.


beta interferons can worsen spasticity sometimes

-C
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Re: Post if CCSVI treatment did NOT work for you

Postby aliki » Sun Mar 16, 2014 8:42 am

After having done 2 angioplasties that failed I started to search what is wrong with me . In Italy some doctors have started to talk about the balloon failure . There are other things that can be treated and have a good result . I am talking about the omoioid muscle and other muscles of the neck . Dr Arata is in touch with the italian doctors and in 2 March he was at Catania http://www.youtube.com/watch?v=cI-aKhVy2qI . I think that the collaboration will have good results .
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Re: Post if CCSVI treatment did NOT work for you

Postby spadworld » Wed Sep 17, 2014 11:46 am

I was still Relapsing Remitting form, when I took the ccsvi "liberation" treatment. I was so stupid that I believed to be safe, after the ccsvi treatment, and I stop the therapy I was following, with copaxone. Now I've turned into secondary progressive and I can hardly walk in normal way, I could be perfect for "Walking dead" telefilm. I believed in Zamboni idea, but it was just an illusion. Ccsvi is a vascolar disease. Ms is fuckin' neurological. That's it, no need to say something more. Save your money.
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Re:

Postby KLM » Tue Dec 16, 2014 5:40 pm

Hi Willm, I havent read to the end of this discussion as it is long and I thought i might loose the place where your comment is.. so im replying without being full informed about what the rest of people are saying about CCSVI not helping, Im very interested in wether CCSVI will help those with primary progressive MS like my sister.

In another thread I started " CCSVI Treatment for Promary Progressive MS" one persons reply was the theory that PPMS differs from other types of MS and may be more to do with blockages in the spinal colum fluid perhaps caused by an accident to the back.. I was interested in this as my sister was involved in a car accident which she never fully recovered from and really hurt her back then she developed MS, the suggestion was to find a chiropractor to do a series of work on the spine to unblock spinal fluid.. please track the full info from my origional post if you are interested, but I thought i'd let you know, i was feeling a bit down having just heard CCSVI might not work for my sister so is nice to think that something else might help.. but im still reading/learning as much as I can on here and want to hear especially from those with PPMS who have tried CCSVI

willm wrote:Hi

Please see Tracking Thread for details:-

http://www.thisisms.com/ftopic-8346-75.html#111395

I have not experienced any benefits at all from the treatment, not even the warm hands and feet or fatigue improvements that so many people get. In fact, I am not sure that the stress and anxiety of the build-up and the trip itself have not accelerated my progression (personal thing - anything out of my routine seems to stress me).

Having said all that, I am still glad that I had the tests and treatment. I now know for sure that I have CCSVI plus I gave myself a "shot" at an improvement, something I would have regretted not doing.

I am not sure what to do now as I am wary of stents without "local" aftercare. I am hoping that once CCSVI becomes more accepted, future research into the condition and "progressives" like myself might find some answers regarding the Azygos and lumbar veins which seems to be where the problem might lie.
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Re: Post if CCSVI treatment did NOT work for you

Postby KLM » Tue Dec 16, 2014 7:56 pm

gibbledygook wrote:Wow, just read the cerebrospinal fluid entry in Wikepedia! The veins and cerebrospinal fluid are intimately linked.


Thanking everyone for their posts, have just spent a couple hours on here just reading this one thread, and have found everyones contributons really useful, I still have a lot to read on other threads, but this has been so informative, my sis has had PPMS for 14 years, we are are so desperate for not just a cure but any improvement, anything that would stop the progression of the disease.

Im really glad that CCSVI has helped some people with MS, but it has been very important to know what can go wrong. It sounds like some major advances are being made, to date none of her doctors even mentioned CCSVI to her only in response to her questions.

So I have learnt today more here on this thread about CCSVI than any of her doctors have told her. I wish the treatment had been sucessful for everyone as I wish it could be sucessful for my sister, but seems to me a lot of the credit for what we do know, and advances into understanding MS (and the different types/treatments) is from the bravery of those who have tried what are relatively new procedures and have also been kind enough to share their experiences allowing others to learn from it...

I wish i had a magic wand X
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Re: Post if CCSVI treatment did NOT work for you

Postby TeresaL » Sat Dec 20, 2014 4:44 pm

I had CCSVI procedure in Albany 3.5 yrs ago. I had 3 better months then the 2 stents got clotted. Last July had 2 stents remove new jug vein from my thigh..was better for a couple of months. But now worse than I was before CCSVI and clotted vein again!
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