My CCSVI op 4 months ago

[Gudi]

4 months ago I have had the CCSVI op done.
-before the operation I was able to walk very slowly with a cane. have had resonable balance . Far from perfect, but not really any other symtoms.
-at the clinic I was diagnosted with 60% blockages both neck veins plus 95% in the azygos (not sure if I spelled that right) anyway all blockages were reduced to just 20%.
-the ultrasound the next day plus one 2 month later showed no blockages (just the remaining 20%)
but
since the op my situation did get considerable worser:
not been able to walk outside anymore ,my balance is gone so bad I am just afraid to fall all the time. I now changed from a cane to a four-pointed walking device.
- of course I tried to find out answers why, dr first thought veins have restenosed but that was not the case.
- not sure what to do now-never thought I would actually get worser-thought in the 'worst case senario' my condition would stay the same but not such luck!

[kif8skip]

I am so sorry to hear your symptoms have increased - It must be so very frustrating!

May you get some relief and peace soon

[rdmc]

Well I know that must be disappointing.

If you'd like to read an interesting blog and posts about CCSVI, you might try Wheelchair Kamikaze...Marc has lots of info, plus lots of posts from those who have had the procedure.

You might even want to send him an email and see if he's ever run into anyone whose symptoms worsened after CCSVI...or maybe you'll find a post from someone in the same situation as yours.

Here's the link, scroll down on the left hand side, and you'll find lots of links to articles he's written on CCSVI.
http://www.wheelchairkamikaze.com/

[there]

A lot of ccsvi information on TIMS also a couple of doctors answering questions. You might want to go there:

...http://www.thisisms.com/forum/chroni...ncy-ccsvi-f40/

Thead on TIMS for people for whom ccsvi did not work and there are several people who got worse.

...http://www.thisisms.com/forum/chroni...opic12342.html...

[Stacer]

I'm so sorry that your condition got worse. I had the procedure done twice, with the latest in May where I got 2 stents in my LIJ. I haven't got any better, but not worse. I hope you get back some of what you lost.

[Zeldr]

How did your doctor determine that you had not restenosed? A lot of the issues in CCSVI are hard to detect. Are you willing to have the doctor go in with the catheter and check again? Or, maybe find a more experienced doctor? Whatever you decide, I am sorry for the difficulty you are having. It's very scary.

[Gudi]

yes I have had it checked in two different hospitals, two different doctors. No restenosis.
After all I believed ONE diagnosis when I decided to go for the operation. If I would go for another op where a catheter would be placed in my vein? Thanks no, lost all my money and most of my mobility.

[Zeldr]

So sorry. Because we are so early in this discovery, the cost and circumstance can be a lot. I wish you well.

[WendyRochet]

I just read your story, has anything improved for you yet? I hope so. God bless, Wendy

[Gudi]

Hi Wendy

Sorry for answering late but i dont come here that often any more.

No, sadly nothing has improved. still mourning for the (pre CCSVI-time) when I was able to walk over the road, okay with a cane and very slow, but at least I have had some independence that is now gone.

The doctor was like first 'I spoke to my colleges and we all agreed the CCSVI op can't have been the reason for your problem' and some weeks and many tests later 'It obviously was the operation but it will be temporary' and then when nothing changed contact ceased.

I would have thought there would be more interest in finding out WHY it didnt work - also in the view of further operations. Now I am left with the feeling that 'I have my $ 10000 - leave me alone'.

Best to all
Gudi

[WendyRochet]

Originally Posted by Gudi

Hi Wendy

Sorry for answering late but i dont come here that often any more.

No, sadly nothing has improved. still mourning for the (pre CCSVI-time) when I was able to walk over the road, okay with a cane and very slow, but at least I have had some independence that is now gone.

The doctor was like first 'I spoke to my colleges and we all agreed the CCSVI op can't have been the reason for your problem' and some weeks and many tests later 'It obviously was the operation but it will be temporary' and then when nothing changed contact ceased.

I would have thought there would be more interest in finding out WHY it didnt work - also in the view of further operations. Now I am left with the feeling that 'I have my $ 10000 - leave me alone'.

Best to all
Gudi

im so sorry you have had this happen to you, you are a brave soul. i will be praying for more healing for you, even for your state of mind

what a difficult challenge you have been faced with

my thoughts and prayers are with you, wendy

[Razgo]

Sorry to hear CCSVI did not work fo your.

It appears it doesn't really work with many at all as many who do it find out down the track that symptoms just return back to where they were before if not worse like yourself.

The only other thing that did not return was their hard earned money that as spent on CCSVI.

It's terrible to hear heart felt stories like yours like many others who have lost all their money and no better off health wise.

there was also a more recent article
Yet another study has been published that does not show association between “CCSVI” and MS. It was published in the journal called “Multiple Sclerosis”.

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