Post if CCSVI treatment did NOT work for you

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

Postby eric593 » Mon Dec 27, 2010 2:05 pm

I was treated early December, 2010. I have had no improvement.

1) How long ago did you have the liberation procedure? Almost a month.

2) What do you mean by 'it did not work for me'? Did you get worse? Did you have another relapse, if so how soon afterwards?
Saw no improvement or change at all.

3) What sort of MS (or other condition) you had before the treatment and what were your symptoms. For how long have you had MS. How progressive was your condition.
RRMS for over 20 years. Stable for last few years with treatment although might have changed to spms. No black holes or atrophy on MRI. Many symptoms that fluctuate.

4) What sort of venous abnormalities did you have and where? Were all your venous abnormalities successfully treated, if so by what means (balloon angioplasty, stent or other?
Right and left IJV and ayzgos were found to have narrowings on venogram. All ballooned with good flow afterwards.

5) Are you having a vascular follow up? Have you checked that your veins have not restenosed? Yes and yes, no re-stenosis.
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Postby vivavie » Mon Dec 27, 2010 3:05 pm

With the fast learning curve of CCSVI procedure technics since last spring most IR see there results improving and re-stenosis rate decreasing. It was reported that an IR on the west coast was down to 1%. Unfortunately I also read that "wow results" had drop to 15-20% at other clinic.

Lucky for you your follow up did not show clot or thrombosis or collapsing or restenosis!!!!!!!!
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Postby Cece » Mon Dec 27, 2010 3:44 pm

The 15-20% was a mistake or not agreed upon, it was one nurse's opinion; when another was asked, she said it was still the same 33% as ever. This was at Dr. Siskin's group.

Eric, I am sorry to hear you haven't had improvements.
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Postby vivavie » Mon Dec 27, 2010 4:26 pm

thank you for the correction Cece! I already found that 33% was low.

Dr Sinan said in his presentation:" If there is no improvement it is because something was missed!"

Nice statement but I know CCSVI is a complicated Beast... Treatment is in its infancy but the learning curve is steep. I can't wait for Dr Sclafani to publish his first paper!
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Postby he1en » Mon Feb 14, 2011 1:09 pm

Had the procedure on 16th jan in egypt. No change/improvements. I have had the ms symptoms 4 1/2 years. Bladder urgency and frequency and only able to walk 5 or 10 mins.
This last year I have noticed my balance is not so good either. Do I regret having the procedure ? don't know...I would be always wondering if I hadn't but now I am in debt.
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CCSVI not working

Postby Jdoyen » Tue Mar 01, 2011 6:08 pm

pklittle,
I am sorry you have had no positive results from the CCSVI procedure.
I had it done on 3 January only my left jugular was ballooned.
Felt a little better a day or two afterwords but since then have gone downhill.
I was walking with a cane the day I had the procedure now I can barely walk with a walker.
I am going back to check the right jugular to see if it closed back up and also see if they can balloon the azygos next Monday.
They told me the left jugular is normal.
I am disappointed as nothing else seems to be working either. I had IV
steroids last week which did nothing and have been on LDN since October which helps me sleep but hasn't helped my other symptoms.
I don't regret trying this and maybe the second try will be better.
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Postby pklittle » Wed Mar 02, 2011 11:46 am

Jdoyen, I feel for you and understand what you must be going through. It has been 9 mos. now for me. I have had a 2nd venogram but no subsequent treatments since last June. Overall, I am still worse than I was pre-angio. I have more leg numbness that is more widespread, and my balance and weakness is worse. I too have a walker now for occassional use, although I am trying not to get too dependent on it.
I keep reading stories of people clotting up as I did but what is really scary to me is the thought that more than one vein could clot up. That is why I hesitate to try again. I suppose I am "fortunate" that only one of mine is blocked. I had an US last week that confirmed this.
8O
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Postby Jdoyen » Thu Mar 03, 2011 12:59 pm

Pklittle,
Thank you for your response. It sounds like we have a very similar situation.
Scince I have been going downhill for less than a year I keep hoping that things will improve.
I too rely on a walker and would like to get back to not needing it.
My worst current symptom is the weakness throughout my whole body.
If That would disappear I would feel so much better.
Right now I don't want to go out of the house.
I'll post after my second procedure next Monday.
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Postby Cece » Thu Mar 03, 2011 1:52 pm

Best wishes for the second procedure, Jdoyen!

Pklittle, wow, I didn't know you were worried about another vein clotting up. I wish we knew what the prevalence of it is. And you had no blood thinners at all last June.... Which jugular was it that clotted? The left is usually a smaller vein than the right, just naturally because of something to do with blood return to the heart. I have a theory that the left is more prone to clotting, because with the right one being bigger it has better blood flow.
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Postby SandyK » Wed Mar 16, 2011 5:00 pm

My procedure was January 3, 2011 in Tukwila, WA. I had two days of improvement and then it all went away. I can now no longer hold silverware so either someone had to feed me or it's all food I can hold with two hands. I look like a Parkinson patient from the tremors.
Diagnosed 1994, Self EDSS is 6.5
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Postby Lyon » Wed Mar 16, 2011 5:14 pm

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Last edited by Lyon on Fri Jun 24, 2011 7:20 pm, edited 1 time in total.
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Postby SandyK » Thu Mar 17, 2011 9:05 am

The tremors weren't like this before. Everything else is crap normal, but the tremors are awful.
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Postby Cece » Thu Mar 17, 2011 9:43 am

I am sorry to hear that, SandyK. Have you talked to the doctor who did your procedure? I'd hope he'd get you back in for a follow-up ultrasound to see if there were any changes in the flow for the worse that could be causing the problems. You might also talk to your neurologist, if there's anything he can do? I've never had hand tremors. :(

Jdoyen, hope you are doing ok since the second procedure, I can't remember, I know you'd said one vein was blocked but if any other veins were ballooned, maybe there will be benefit from that. All the best.
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Postby Bender » Thu Mar 17, 2011 9:57 am

I'm sorry if this comes off as rude, but it seems like the people who "believe" in CCSVI believe only this diagnosis and avenue of treatment and deny MS as an autoimmune condition as dogmatically as the people who believe in the MS autoimmune theory deny CCCSVI.

Given how differently MS acts in people isn't it possible not that SandyK's doctor got it wrong but that her MS has some autoimmune cause? Against my Doctors advice I got checked out CCSVI and showed no flow disruption, (which seemed especially odd to me as I also know I have a slipped disk in my neck, but I digress) and I can tell you from my MRI's and the pain in my legs and trunk that I indeed have MS.

Isn't the common sense view of this that CCCSVI is the cause of some people's demylination and that there are other root causes, probably including an autoimmune disorder for other people's?
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Postby Bender » Thu Mar 17, 2011 9:59 am

PS. I will freely agree, however, that most doctors and the medical establishment in the US are nowhere near as accepting of CCCSVI as I think is reasonable and responsible either.

PPS. I by no means mean to express an opinion about your particular case SandyK, You were just the apparent example of CCCSVI treatment not working with someone saying in effect "keep trying at this in spite of it not working"
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