Post if CCSVI treatment did NOT work for you

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

Postby Cece » Thu Mar 17, 2011 10:12 am

Because of the timing (she got worse after getting venoplasty), it might be that the venoplasty caused the vein to clot closed or some complication along those lines. This has happened to other people.

It might also be entirely unrelated to the procedure and the timing of it is just a coincidence, that is true too.

It's not that one should keep trying when it isn't working, it's that when it isn't working it might be because of what's been done (i.e. the procedure may have made things worse) and that needing to be checked. Once you start a process, it might need continuing care, even if one would rather get off the merry-go-round as I think pklittle put it once.
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Postby erinc14 » Thu Mar 17, 2011 12:35 pm

it's been a week , other than warm feet and less spasms there's been nothing else :( could there be more ?
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Postby dan46 » Thu Mar 17, 2011 1:54 pm

Hi
It's been a month since my procedure. Both Jugs ballooned. No Improvements so far. Still hoping for some improvements. Oh well. Diagnosed in 1978 so I wasn't expecting too much. We'll see what the follow up US tells us to do next. I'm not giving up on ccsvi.
-Dan46-
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Postby Bender » Thu Mar 17, 2011 10:15 pm

My frustration was more caused by someone in my real life. eep sorry about that.
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Ccsvi. Not working

Postby Jdoyen » Fri Mar 18, 2011 6:22 am

Cece wrote: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.



Hi Cece and SandyK,
It's been 11 days since my second procedure. RJV now closed up and AZ
Was opened.
I have no improvements and have gotten weaker.
It was such an effort to go and get this treatment an now such a letdown that it didn't produce anything positive.
Napping more and longer.
Have lost 10 pounds since January without trying.
It could be the LDN
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Postby SandyK » Sun Mar 27, 2011 9:32 pm

Cece...this was Dr.McGukin in Tukwila,WA and he doesn't do US. I'd be willing to try again if $$ dropped from the heavens.
Diagnosed 1994, Self EDSS is 6.5
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veins blocked again

Postby johnjoe » Wed Apr 06, 2011 3:01 pm

i got a doppler ultrasound done today in dublin and it showed that my veins are blocked again, 10th months since i was in bulgaria and go ccsvi done using balloon> has anyone else seen this happen to them and what did you do? did you go back, another procedure done? stenting used at all??
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Re: veins blocked again

Postby dania » Wed Apr 06, 2011 3:17 pm

johnjoe wrote:i got a doppler ultrasound done today in dublin and it showed that my veins are blocked again, 10th months since i was in bulgaria and go ccsvi done using balloon> has anyone else seen this happen to them and what did you do? did you go back, another procedure done? stenting used at all??

I had it done in Bulgaria and retuned 3 weeks later. All 3 veins were NOW, 98% closed. Plus the 1 stent had blood clots in it. They cut up the clot and angioplastied all 3 veins. I was on the table for 5 hours. Dr Petrov could barely get into my veins. I got worse and tried a third time with Dr Siskin in Albany. He was unable to do anything because of scarring. Tried a fourth time with Dr Arata in California and he too was unable to do anything because of scaring. Plus my stent was now pinched and bent at one end.
My advice is go see Dr Arata as he believes this is a valve problem and treats them at the same time. I wish that is what I had done.
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hello...

Postby leetz » Thu Apr 07, 2011 12:43 pm

Hi, got my procedure done, was good for about 3 weeks...had steady gait, balance was better, and i could stand for longer, spasticity was well improved also... Dr. and I decided to wait for more research being that i had a venogram and then a venogram with ballooning...so now i wait...wondering who is going to be the scientist to come up with stent's for vien's....and so i still wait....thinking that waiting is better than doing irreversible damage to the viens...
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Re: hello...

Postby questor » Thu Apr 07, 2011 2:28 pm

leetz wrote:....thinking that waiting is better than doing irreversible damage to the viens...

leetz,
I applaud your good sense.

May you not have long to wait.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
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Regular Botox Bladder Injections
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Postby miloud » Sun May 01, 2011 9:19 pm

Hi
I had my angio on 6 january 2011. I still the same, no improvements at all.
Good luck for every one.
cheers
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Postby munchkin » Tue May 03, 2011 8:01 am

I had mine done on March 2, both IJV were over 50% blocked. Had great results for two weeks. Balance, numbness, spasticity (sp?), foot drop, fatigue and then the benefits started to disappear and a follow-up U/S showed LIJV was closing and I go for another U/S at the end of May to see where the LIJV is at and what is happening with the RIJV.
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Postby Interrupted » Thu Jun 30, 2011 5:34 pm

Update: Had the procedure done in Poland in October last year, nearly 9 months ago. Both jugulars.

In brief: No improvements, in fact it seemed to accelerate symptoms. Told to wait and see, waited and see'd - nup, not a thing except going downhill faster.
Been too ill to go for follow up, so no idea whether I have re-stenosed or not but it doesn't really matter, I wouldn't go for the procedure again so soon. Would rather wait for the procedure and veins checked to advance than risk un-repairable scarring and ruining the veins beyond help.

If I had had any benefits perhaps I would but I didn't so i'm not convinced that the right veins were covered. Not worth the risk right now.

I still believe CCSVI is a result of another problem, MS a second to that, and neither the actual cause. I want to get to the root so currently looking at this while CCSVI surgery advances x
28/07/10, 04/10/10, 16/11/10 - Dopplers x3 Ireland, Poland, Scotland.
12/10/10 - 1st procedure, Poland. Symptoms worsened. No improvement.
Verdict: I urge caution + am taking a back seat watching research ATM.
13/02/12 - Started Wheldon ABX protocol.
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Postby munchkin » Thu Jun 30, 2011 7:30 pm

My comments are already here, but I am wondering if anyone keeps track of those of us who had treatment and are getting worse.

I would like to think that there would be some useful information to be garnered from those of us who did show improvements and then lost them as our veins closed for whatever reason.
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Postby pklittle » Sun Jul 03, 2011 9:05 pm

munchkin wrote:My comments are already here, but I am wondering if anyone keeps track of those of us who had treatment and are getting worse.

I would like to think that there would be some useful information to be garnered from those of us who did show improvements and then lost them as our veins closed for whatever reason.


I keep getting worse. It has been a year now. My legs tire so easily it scares me.

Tracking those of us worse? Heck no.
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