Post if CCSVI treatment did NOT work for you

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

Postby edude » Fri Jul 09, 2010 6:50 pm

I got treated almost 2 months ago.
right jug, collapsed again directly after ballooning so a stent was put.
meaning the vein can't restenose.

no other vein problems where found.

To be honest and to my despair there is no improvement at all.

maybe it's to early, maybe i got bad luck... not sure
but i still got active lesions (3) on my last scan.

I do not and have not ever taken any drugs for ms.

among others problems i suffer most from heat intolerance
it makes it impossible to do and think.
especially now with this heat wave.


greets

edude
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Postby Lyon » Fri Jul 09, 2010 6:55 pm

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Postby Cece » Fri Jul 09, 2010 7:19 pm

I have gone back and forth between wondering whether this sticky is necessary or not but after these last posts I'm back to thinking it is. This forum in general is very positive toward CCSVI, I am very positive toward CCSVI, but there are these reports like these when people do not get the results...and maybe this can be a place for regrouping and grieving and figuring out what comes next.

Here is another such place, over on Facebook:
http://www.facebook.com/group.php?gid=1 ... &ref=share

(the POST- CCSVI PROCEDURE -SLOWER RECOVERY Support and discussionGROUP)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby downtowner » Sat Jul 10, 2010 5:25 am

It's not only a matter of improvment but also a matter of progression. If your ms has not progressed then there were some positives
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Postby pklittle » Sat Jul 10, 2010 5:31 am

I am so thankful for this sticky. It provides one clearly accessible place to go to see a group of posts from people like me who have had the treatment, and had no positive results. Otherwise, we run the risk of the thread rolling off into neverland or getting lost in a hard to read list of mixed results.
We hear so much hoopla about the successes, but need to clearly see the other side. I don't know why I read sometimes that the liberated ones are on the "dark side". To me, THIS is the dark side.

Almost 4 weeks post angioplasty and nothing yet. Feel like crap.
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Postby vivavie » Sat Jul 10, 2010 6:56 am

11 weeks tomorrow!
Right after the procedure I had some small but non-placebo (unexpected) gain: better speech (volume and clarity), more saliva and bowel regularity.
Those were gone after 6 weeks. Blocked stent?

I did not have a WOW liberation. My goal was more energy and warm feet. The first month after the procedure was very difficult, I felt WORST. I really think the bloodthinners have something to do with that. The Clexane injections gave me a Jello brain feeling.

Now, I survived the heat wave better (albeit with socks and heat pad for my feet!) than the small one we had in May and definitly better than last year.
My legs never bucckle after sitting and exercice. I walk straight no more hip compensation.

I always felt the pain, fatigue and brain fog remained unchanged but yesterday night I really took the time to look back over the last 11 weeks; to be honnest the changes are subtles and very very graduals.
I don't feel good but by comparaison I am better than I was in April. I think the stress, the travelling, the expectations of every one around me, the explaining, etc were very taxing on me. It took a good two months to recuperate and let go. I am not in the downside spiraling anymore, IT IS getting better.

With the meds, doctors feel it is a success when ms remain unchanged. A 33% episode reduction is good! But with angio if we don't come out running right after it proves that it is a sham!?!

I am still trying to get my Azygos check if nothing else I want warm feet.

RRMS 2000, stent left jug, no ms meds currently (past: rebiff, copaxone and mitoxantrone)
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Postby willm » Sat Jul 10, 2010 8:06 am

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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of course i am still glad...

Postby edude » Sat Jul 10, 2010 1:30 pm

of course i am still glad i went for it!

it's to soon to say if still get worse or the progression stabilized, as i never experienced any attacks, I just went down slowly but steadily.

Just that i was hoping on some immediate effects on the heat intolerance...
yep just hoping after all those nice stories...

I still think this is the right track to go and i wish all of those who get treated the very best!!!

Would be great to find other things to try now.

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Postby Zeureka » Sat Jul 10, 2010 2:40 pm

vivavie wrote:With the meds, doctors feel it is a success when ms remain unchanged. A 33% episode reduction is good! But with angio if we don't come out running right after it proves that it is a sham!?!

Well said Vivavie - I'm still fatigue-instability-spell-free these days, after 6 weeks, but even if... In fact, disease progression in some people could be lowered at higher (or at least similar - so where is the difference in type of effect!) rate than many meds upon longer period. The coming years will tell...
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Maybe it just takes time?

Postby Rosegirl » Sun Jul 11, 2010 4:22 am

I was liberated four days ago. My only problem is that I have to "wall walk". If I go out, I use a scooter. That's been the case for over five years.

Several times within those five years, for a few minutes, I could walk perfectly! And as quickly as it came, it left. Never figured out what caused it. So I hoped that the liberation treatment would finally bring that back for good. But so far, no improvement in walking.

While I was on the table for the procedure, suddenly everything got just a little sharper, that "HD effect" that folks talk about. I never thought I had cognitive problems. I asked the doctor if the seditive had worn off, but he just smiled and said that he was opening blockages.

So far, the only other change is that my feet are no longer that festive shade of purple. Actually, they are purple every morning when I wake up, but within about an hour, they match the rest of me.

My right IJV was fine, but my left just disintegrated into little collateral veins and there was nothing the doctor could do. My azygous was ballooned four or five times.

If there are no changes within a few months, I intend to ask about another venagram. It seems that the scanning techniques and tools the doctors use are changing rapidly as they share knowledge. Even if you have not restenosed, your doctor could not fix a problem that he couldn't find (like stuck valves or flaps).
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Postby Salvatore24 » Sun Jul 11, 2010 5:15 am

Lyon wrote:
edude wrote:among others problems i suffer most from heat intolerance
it makes it impossible to do and think.
especially now with this heat wave.
Welcome to thisisms edude and thanks for reporting your results.


Coincidence that you're welcoming someone who has not seen significant improvement from CCSVI treatment? Pity you don't welcome other members who report improvement in their very first post on TIMS.
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Postby Lyon » Sun Jul 11, 2010 6:38 am

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Last edited by Lyon on Sun Nov 20, 2011 6:58 pm, edited 1 time in total.
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Postby pklittle » Sun Jul 11, 2010 7:14 am

Salvatore24 wrote:Coincidence that you're welcoming someone who has not seen significant improvement from CCSVI treatment? Pity you don't welcome other members who report improvement in their very first post on TIMS.


Was that necessary?

I'd like to see this thread stay on topic, reporting post-liberation results and not get riddled with this kind of stuff.
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Postby willm » Sun Jul 11, 2010 9:58 am

pklittle wrote:

I'd like to see this thread stay on topic, reporting post-liberation results and not get riddled with this kind of stuff.


Hear Hear!
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Procedure June 23, 2010

Postby rettahb » Sun Jul 11, 2010 11:10 am

The only result I have seen is that I am happier. My mood has clearly elevated.

But damn! yes I wanted to get my strength and walking back. I wanted to loose a whole list of symptoms!

Do I have any regrets? absolutely not. It had to be checked! I had 30% stenosis in left Jugular an Azygous veins. Both Angioplastied. My doc wondered if there were other veins worth checking.

We are pioneers folks. There is more information coming.

No point in giving up the ship. Hang in there, it will most interesting to see whats coming next.
~retta

rettahb.blogspot.com
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