Liberated PPMS'ers, please post your experiences here!

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

Liberated PPMS'ers, please post your experiences here!

Postby CathyRabbit » Sun Apr 11, 2010 7:23 pm

I have spent many days, many hours, reading through posts relating to people who have PPMS and have had the liberation operation. My eyes are so tired! I think the tracking project is great, but I thought it would be a good idea to have a post where we PPMS'ers can post any changes after the procedure since there are much fewer of us! Maybe there is already a thread and I missed it! Anyways, I would love to hear what changes you may or may not have had - thanks! :wink:
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Postby Donnchadh » Mon Apr 12, 2010 7:10 am

My neuro diagnosed me as PP MS. I am on the tracking project and also have started an individual thread. Search Donnchadh

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Got MS?.....Get Liberated!
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Postby Niceflow » Mon Apr 12, 2010 5:31 pm

Hi, thank you for starting this new thread ! I think it is an excellent idea. It will help us know what kind of improvements PPMS people are finding after the procedure.

And since most of the posts relate to RRMS, I think it is worth it concentrating here on PPMS, or even SPMS people after they have had the liberation treatment.

Thanks again !
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Postby marcstck » Mon Apr 12, 2010 5:54 pm

I was diagnosed PPMS in 2003. My presentation was always atypical, and recently the diagnosis has come into question, with the NIH opining that I don't have MS. My local neurologist isn't so sure, still thinks this could be atypical PPMS.

What first started out as a slight limp in 2003 has progressed since then to right side paralysis, with the left side starting to show serious progression as well. I use a wheelchair to get around.

Last month I underwent a liberation procedure with Dr. Sclafani, during which it was found that my right internal jugular is blocked by a malformed valve. Unfortunately, balloon angioplasty was unable to sufficiently open the valve, so the problem remains. Dr. Sclafani also discovered some stenosis in my azygos vein, but this problem too was not able to be corrected.

So, my procedure was a "successful failure". It showed that I do have the blood flow problems associated with CCSVI, but those problems were unable to be addressed. Hoping to get them addressed sometime in the not-too-distant future, hoping that a solution other than stents will be found.

I've written about my experiences with the liberation procedure, as well as lots about CCSVI in general, on my blog, "Wheelchair Kamikaze". You'll find a full description there.
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Postby EnjoyingTheRide » Tue Apr 13, 2010 3:50 am

I was diagnosed with PPMS in 2001. I've progressed from a slight limp to fulltime wheelchair user. A little over a year ago the weakness started spreading from my lower body to my upper body. I stopped working 11 months ago.

I had the liberation procedure done by Dr. Sclafani at Kings County Hospital Center in Brooklyn (same as Wheelchair Kamikaze) on March 17th.

Dr. Sclafani found stenosis in both jugular veins and the azygos vein, and successfully ballooned all three. He also found stenosis in both vertebral veins, but did not attempt angioplasty of those.

I have seen zero changes, for the better or worse, since my procedure. This is not unexpected for me. It may take 3 - 6 months before I can say one way or the other if my progression has stopped. That's what I'm hoping for- slowed or stopped progression.

I've written extensively about my CCSVI experience at my blog. For those posts, click here:

http://www.enjoyingtheride.com/search/label/CCSVI
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Postby whyRwehere » Tue Apr 13, 2010 4:56 am

My husband's problem appeared in 2002, although looking back I can see there were earlier signs that we almost didn't notice. He should be in a wheelchair now, but doesn't want one, and we can't afford one either.
For 2 months around the time of his 2 procedures, he suffered from a continuous UTI, due to an inability to urinate when taking antibiotics, necessitating a Foley catheter, causing another UTI....endless cycle. He is now self cathing, not on antibiotics and taking supplements to control the bacteria as best he can. The reason I mention these problems, is because they hinder him feeling better. The antibiotic use, and the UTI both cause him to walk badly(well, he does that already, but he can't stand and move at all, when it is very bad). Therefore, it is hard to measure a difference there.
He has not had the warming of his feet, which others describe or the HD television effect either. Again, he has a problem of missing veins in his pelvic area, and this problem has no fix...
Still, he seems less tired and groggy to me...he often stays up later than he used to and he seems very present, less tired looking. He did have successful unblocking of what was basically a shut down left jugular. He was ballooned in 3 separate locations there, and checking this 2 months after being done, it has been found to be still unblocked. Yay.
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Postby cnmurray » Tue May 25, 2010 4:38 am

WhyRWeHere,

Have you noticed any difference in your husbands leg strength?

Thanks.

My fiancee has PPMS and it's just started getting worse. He is a lot wobblier and has significant leg pain and has just quit his job. We are getting the tests done for CCSVI (Buffalo-http://www.mridhs.com/ phone 905-615-7740 ) and found a facility in Albany NY (http://www.amc.edu/Patient/services/neu ... ntion.html) that will do the Liberation Treatment.

I just discovered that Zamboni's work is less effective for PPMS than the other types. I had such high hopes.... We want to go through the procedure but I wonder what to expect. Thanks for this blog!

Does anybody know whether it's less effective for us because not all of the affected veins can be cleared, or because the iron builds up again and stents are really necessary? Or the procedure needs to be repeated?

Love to all of you! And courage. : )
Cecilia
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Postby EnjoyingTheRide » Tue May 25, 2010 4:53 am

cnmurray wrote:WhyRWeHere,

I just discovered that Zamboni's work is less effective for PPMS than the other types. I had such high hopes.... We want to go through the procedure but I wonder what to expect. Thanks for this blog!

Does anybody know whether it's less effective for us because not all of the affected veins can be cleared, or because the iron builds up again and stents are really necessary? Or the procedure needs to be repeated?

Love to all of you! And courage. : )
Cecilia


I take issue with the common perception that Zamboni's work shows less effectiveness for PPMS. PPMS is a different animal than RRMS or SPMS. I think our expectations may need to reflect that. Our deficits may all be due to permanent neurological damage, such that our best case outcome is a cessation of progression. Nobody, including Zamboni, has followed PPMS patients long term to see if CCSVI treatment stops progression. It might (and of course it might not).

Good luck in Buffalo and Albany Cecilia. When did New York State become the hotbed of CCSVI activity in North America, anyway? :D
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Postby cnmurray » Tue May 25, 2010 6:00 am

Good point, Mitch!

I'll post our results here. We are getting the scans June 8th and 9th and are working on scheduling an appointment for the treatment.

My feeling is that we (Ted and I) need to bravely explore every option that seems reasonable, grateful for what we *do* have: today. And today is great.

They will know more in a couple of years, and we'll take advantage of that then. Lots of research is being done, as Zamboni has gotten a lot of attention. If the Liberation Treatment slows the course of MS in the meantime, that is an enormous victory.

Mighty nice to be traveling to New York rather than Poland or India, too!

Thanks!
Cecilia
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Postby esta » Tue May 25, 2010 8:03 am

I am PPMS, and liberated 3 weeks ago. I have noticed small improvements although major in many ways, like a clear head, warmer hands and feet and today, typing using my left had this AM, I expect this to continue. I had my righ jugular vein ballooned, no stents.
I guess I knew going in, the changes wouldn't be great, but certainly worth any change for the better.
esta
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Postby esta » Tue May 25, 2010 8:08 am

i should mention that it was from Zanboni's work that I knew PPMS patients didn't fare as well, but still worth it!
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Postby whyRwehere » Tue May 25, 2010 10:17 am

Hi,
My husband is walking badly as usual...he just stopped taking antibiotics again- had them for 3 weeks for a staph. UTI... that was different.
It's been warm and humid today, but he doesn't seem that bothered by the temp. He IS fatigued today...trying to meet a stressful deadline. I think the reason he is not improved, is because he still has missing veins in his sacral plexus...he still has issues and the flow is still slower than it should be. I think if your man has fixable issues, he will feel better, even if he doesn't start walking the next day. It's always worth trying, I think, because what's the alternative?
Last edited by whyRwehere on Tue May 25, 2010 11:41 am, edited 1 time in total.
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Postby cnmurray » Tue May 25, 2010 11:19 am

I'm so glad to hear that there are improvements, Esta and Why!

We should start a new slogan... Fixed is fixed, but better is still better. : )

Cecilia
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Postby NZer1 » Tue May 25, 2010 3:14 pm

Were there any surveys or tests that you did before,after and for a follow up? I'm looking for help to design a survey that can be used as part of the treatment so it can be used globally by all treatment providers that is repeatable and for followup purposes as well.
Help please?
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Postby DBird » Tue May 25, 2010 5:55 pm

For those that have had treatment in say, Poland, do you need to return there for check-up months later? We are going to Tychy end of June. My wife has PPMS with some relapses. Not sure about that diagnoses.
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