Post if CCSVI treatment did NOT work for you

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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NotFound
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Re: Post if CCSVI treatment did NOT work for you

Post by NotFound » Wed Oct 26, 2011 10:32 am

Been about 9 month since my azygous was found to be candy-wrapped. 6 mm stent placed. No improvements.
After unsuccessful trip to Poland (where "nothing was found") and a procedure in California (where I can not help but doubt if anything indeed has been done) - I do not have any more money to even go check if the:
1) Stent is indeed there
2) Stent did not move
3) Stent did not get clogged

RogerNadd

Re: Post if CCSVI treatment did NOT work for you

Post by RogerNadd » Tue Nov 22, 2011 5:09 pm

Although I find this thread a little scary, maybe it would be nice for readability if it could be more like the tracking threads, with less discussion of why the treatment didn't work.

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pklittle
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Re: Post if CCSVI treatment did NOT work for you

Post by pklittle » Wed Nov 23, 2011 10:26 am

RogerNadd wrote:Although I find this thread a little scary, maybe it would be nice for readability if it could be more like the tracking threads, with less discussion of why the treatment didn't work.
When I started this thread a year ago, I intended it to be reports from those that it did not work for since it seemed all we heard about was how amazing this treatment was for us with MS. It was not to be a discussion thread per se, as the reports then get lost in all the suggestions and speculations.

Hopefully it can get back to the way it was.

As for me, I have tried twice now, most recently with Dr. Sclafani on Sept 2nd, 2011. At that time DrS ballooned my azygous and right jugular. He attempted a rendevous on my occluded left jug. I was found to have the nutcracker syndrome and he stented that.
I then experienced more core strength for a few weeks and was quite hopeful. However I lost that :( and am as I was. I am going to have my first followup soon.

I am scared of what the future holds.

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Re: Post if CCSVI treatment did NOT work for you

Post by jimmylegs » Wed Nov 23, 2011 1:11 pm

hi all, please recall that the original tracking thread was intended to record both kinds of experiences. please also note that it was radeck who initiated the tracking thread, whose experiences are duly logged on page 1.

tracking thread post 1
http://www.thisisms.com/forum/chronic-c ... tml#p69992
radeck's log
http://www.thisisms.com/forum/chronic-c ... tml#p72836

i hope everyone will make sure to report results in the tracking thread regardless of whether the experience met expectations. nobody has posted a new log there since july, either positive or negative. i can't tell quickly whether folks who already have logs posted, have been updating them as situations evolve.

i hope you'll also note my update in the first link above - no idea how long ago that was now - regarding using the post subject line to provide an 'at-a-glance' clue as to the individual's experience. to date i do not think anyone has used the subject line to provide an instant sense of positive, neutral, negative, or pending results.

if anyone who has a tracking thread post has gone back and updated their subject line, thanks :) i hope everyone who can, will.

as previously discussed (last time we were on this subject, whenever that was), both negative and positive reports can be done quasi-anonymously if preferred.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: Post if CCSVI treatment did NOT work for you

Post by Cece » Wed Nov 23, 2011 2:23 pm

I remember being impressed by the idea of the facebook group for slow- or non-responders. It allowed for discussion or support from the people who've been there. I will bow out of this thread now! Wishing all the best for everyone. If we have the regular tracking thread, this thread, and my improvement reports thread, we've covered everything, I think?

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Re: Post if CCSVI treatment did NOT work for you

Post by milesap » Wed Feb 08, 2012 10:04 am

If you visit the CCSVItracker.com and plug in ppms you will see some patients improve after nine months. But its too early for ppms patients like me to see results. It took about eight years to get to my level of disability and it's not going to improve overnight. I think for us it will take a long time as the body tries to heal itself and may not improve significantly. The most I will hope for in CCSVI treatment is the vascular condition is corrected and the progression of the disease is reduced. Anything else is gravy.

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Re: Post if CCSVI treatment did NOT work for you

Post by Cece » Tue Feb 21, 2012 8:58 am

Page 89 of the ISNVD 2012 abstracts features a case report on a patient whose left jugular thrombosed post-treatment. Patient developed new brain lesions and pre-existing lesions increased in size.
www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf
A relationship between MS plaques and cerebrovascular hemodynamics is implied. Meaning the thrombosed vein is suspected to have caused the increase in brain lesions.

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Re: Post if CCSVI treatment did NOT work for you

Post by duckfan » Tue Feb 21, 2012 10:33 am

My husband had his procedure done in at VAC in Tukwila, Wa last Sept. He noticed no improvements. We were hopeful that some positive changes would take place but nothing to report. He was so looking forward to improvement. Now we wait for the next "miracle" to come along.

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THEGREEKFROMTHED
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Re: Post if CCSVI treatment did NOT work for you

Post by THEGREEKFROMTHED » Mon Mar 05, 2012 10:04 am

Cece wrote:Page 89 of the ISNVD 2012 abstracts features a case report on a patient whose left jugular thrombosed post-treatment. Patient developed new brain lesions and pre-existing lesions increased in size.
http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf
A relationship between MS plaques and cerebrovascular hemodynamics is implied. Meaning the thrombosed vein is suspected to have caused the increase in brain lesions.

i want to believe this yet i have microscopic brain lesions ( a few) and both jugs closed about 75% im at a loss...

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Re: Post if CCSVI treatment did NOT work for you

Post by scorpions » Sat Mar 17, 2012 5:14 am

As one constituent who lives with MS wrote: “any federal dollars for research into any disease has to follow the established pathways for research. The current hysterical response to CCSVI is no reason to circumvent these proven procedures.”



http://www.kelownacapnews.com/opinion/l ... 01973.html

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Re: Post if CCSVI treatment did NOT work for you

Post by munchkin » Sat Mar 17, 2012 8:41 am

As someone who also live with MS, I too believe that established pathways for research need to be followed. The statement "The current hysterical response to CCSVI is no reason to circumvent these proven procedures" is missing the point that the MS researchers are avoiding doing proper research into CCSVI and therein lies the whole problem. When there is mounting evidence that the narrowed veins may have an impact on the health of our brains and the rest of our bodies it is negligent of the researchers to avoid looking into this issue. There is much evidence that return blood flow issues can affect people neurologically and physically.
I have had the procedure and I have had serious scarring, I am not hysterical and I find it offensive that those of us who believe blood flow is important are accused of being hysterical when there are people who believe the CRAP drugs, stem cells, antibiotics, worm therapy, UCC, and more is the answer amid negative results and death. These dismisive and demeaning comments aren't made on the Tysabri thread for example. Does fast tracking a drug make it safer, it wouldn't appear so. But the negative comments about CCSVI come on a regular basis from some posters.
Speaking for myself, if the MS researchers had looked at CCSVI with open minds we would be so much further along in understanding some of these issues.

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Robnl
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Re: Post if CCSVI treatment did NOT work for you

Post by Robnl » Thu Apr 19, 2012 1:28 am

I totally agree

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Re: Post if CCSVI treatment did NOT work for you

Post by Razgo » Thu Apr 19, 2012 10:26 pm

Unfortunately I don't believe putting a stent in your veins will cure the problem of MS.

Do I believe in good blood flow? yes of course i do just like anyone else knows that good blood flow = good oxygen levels and good health in general even if you do have MS. But good flow won't cure MS or even reverse the effects because if that were true MS would cured.

But do i believe CCSVI is the only way to get good blood flow and open up the veins? No i don't.

I do not see any negativity in this thread against CCSVI but rather people who gave it a go and found out otherwise that it does not work. And if it does not work for them they are entitled to say so and let people know their own experiences with a treatment that failed them.

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Re: Post if CCSVI treatment did NOT work for you

Post by milesap » Mon Apr 23, 2012 8:41 am

Would recommend the CCSVI locator site http://ccsvi-ms.ning.com/?xg_source=msg_mes_network and view the video at the bottom of main page called untaggling MS from ccsvi/

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Re: Post if CCSVI treatment did NOT work for you

Post by Cece » Mon Apr 23, 2012 4:49 pm

Razgo wrote:But do i believe CCSVI is the only way to get good blood flow and open up the veins? No i don't.
There may be other ways to increase blood flow such as exercising, but I don't know of any other way to improve veins that are blocked by thick fixed valves within the veins. My valves blocked 100% of my left jugular and 80% of my right jugular. Treatable by angioplasty.

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