This Is MS Multiple Sclerosis Community: Knowledge & Support

I've had MS for over 17 years and I had the Liberation Procedure done in November 2010. I experienced remarkable improvements in fatigue, balance, numbness and my brain fogginess lifted. Over the past several months I have been experiencing a gradual increase in these symptoms with a marked worsening recently and I'm considering having the procedure done again. I have just come off a very stressful period in my personal life and the fact that I didn't have a major relapse is amazing to me. Perhaps the increased symptoms are a result of the stress or the heat wave we just had in the Northeast US.

Has anyone out there had the procedure done again after experiencing a worsening of symptoms?

I just had it done for a second time two weeks ago, after my first in Feb 2011. It was interesting, I'd had certain improvements that were short-lived (6 weeks) but other improvements that were still going strong and yet other improvements that only kicked in after three months post-procedure. This last set of improvements had some significant ones, including foot drop and heat intolerance.

It turns out my left jugular had restenosed. I experienced a return of the couple improvements I'd lost early on (numbness abated, vision sharper, colors not just bright but very bright). The only downside is that I am really tired....

Have you thought about getting a zamboni doppler to check to see if you still meet the criteria for ccsvi? Restenosis is common enough.

I have had 2 procedures. Tried 3 more times but they were unable to get in due to scarring. I am much worse. Stands to reason, less blood flow the worse the disabilities.
Doctors are noticing patients get the best improvements with the first. Second try, usually not as much, or any.

Welcome Hollyberry,

I have been treated 4 times, and improved again after each one. I am able to see a local expert who is conservative in his treatment. He would rather have to go back again than be too aggressive. Until we know more he and I are in complete agreement about this course.

The valves at the base of both jugulars keep restenosing, so he keeps stretching them back open. Some doctors are rupturing the annulus in these valves hoping for a more permanent solution. My doc is not prepared to be so aggressive without more information.

I am very lucky to have a fantastic doctor close to home. This is the best case scenario, but I realize not everybody lives in a country where that is possible.

Good luck to you!
Nicole

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Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

lucky125, has Dr. Haskal used IVUS? And does he have IRB approval? We haven't heard much about what he's up to for awhile.

I think the conservative approach beats out the aggressive approach. It is very good to hear that you are having improvements each time. I recently had procedure #2 and have been doing well.

Hi Cece,

Yes Haskal used IVUS the first two times. By his third go at my veins he knew exactly where to find the problems, and was not disappointed. As Dr. Sclafani notes IVUS is expensive and takes more time. Haskal didn't feel that it was necessary this last time, although it was there if he wanted it.

This is just one more reason to stick with the same doctor if at all possible. We both knew before I got on the table in June what we were most likely to find.

He was more aggressive this time, inflating the balloon nine or ten times on each side. It really hurt. He explained that he was making micro-tears in the vein walls. He won't bust the annulus, but he will do damage to the valves in his own way.

Nicole

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

I never knew you had problems with drop foot. Drop foot is my biggest problem and makes it very difficult to walk now, which causes my EDSS score to be about 6.5. Its like having my foot nailed to the floor. But I've been holding off on CCSVI treatment because most of the reading I've done suggests it is not very effective at improving EDSS scores. If it helped your drop foot that's great news. Did Dr. S treat some different veins this time?

I remember pretty vividly, eight years ago, I stood up from the table and took a step and my right foot didn't rise at all. I kept trying, it kept not working, and I fell flat. My oldest child was a baby and I was scared of it happening again when I was holding her. But it didn't. It got diagnosed as foot drop three years later, when it acted up again but this time it caused me more trouble over a few months and then slowly healed over that winter. It healed enough that it passed the neuro test, but it didn't pass the long walk test (I could take long walks, but it acted up by the end) or the up the stairs test (I could go up stairs, I just felt it in that foot as I went) or sometimes acting up at random. Sometimes I'd swing my right leg out to the side rather than walking straight but not if anyone was watching, then I'd suck it up and hide it. It's minimal and it was better than how it had been but I didn't expect any improvement in it, because it's not vascular, it's definitely neurological. But, improve the vascular, and the neurological can heal.... It had been pretty constant, but at a minimal level compared to what I know some here have experienced, for five years. Then I had the first procedure done in February and sometime in May, my residual foot drop was just gone. Just gone. It's like getting younger when I was resigned to being older, in that area. This was three months after the first procedure when my two jugulars were both treated for severe stenosis; a few months later was my second procedure where my left jugular that had closed up partially was opened again.

I think I was a really good candidate for CCSVI treatment, because I had severe CCSVI but still minimal MS disability. Or because I had an excellent doctor or because I got lucky.

Lucky,

Does Dr. Haskal give any kind of pain meds during the procedure?

Has he said anything about seeing any kind of scarring or any deleterious impact on your veins from multiple treatments? Or do they still look strong and healthy inside despite the multiple treatments?

I'm glad to hear you continue to have improvements from re-treatments, that isn't something we hear about very often. Does Dr. Haskal see this as being the standard course for most, continued re-treatments?

It's good to hear from you and know that things are still going well. He inflated the balloon nine or ten times per side! That is a lot. Maybe this is the one that lasts.

David,
My foot drop on the right side was so bad for years that I finally got an AFO with dorsiflexion assist several months before seeing Haskal. My EDSS was 6. After treatment my neuro documented it at 3.5. It is a spring at the ankle that lifts the foot for me. After my first treatment with Haskal it was gone. Completely.

Strangely, when I restenosed it was the LEFT toes that began catching, not the right. I was able to be retreated before I needed another AFO for that foot, and it cleared up, too.

I have known that I have restenosed each time because my fatigue gets much worse, I choke again, and I fall cause of that darn foot drop. It is crazy that opening veins can improve the foot drop, but Cece and I are two examples that it does. Go figure, and thank goodness!

Cece,

Haskal gives Fentanyl upon request. The first time I didn't need any, second time just a little when he hit my most stubborn l. valve, and the third time he gave me more, but it wasn't enough to really stop the pain. That is why I told him that IF there is a next time, just knock me out. I've watched enough of these by now, I'll pass on the next show. That way he can inflate to his heart's content, and I can sleep like a baby. IF.

From the beginning he has expected that we will need regular tune ups. He has never believed that this can be a one time only treatment, especially for someone like me who has been symptomatic for 21 years!

My veins have only been impacted where he wanted them to be. There has been no visible or noticable damage to veins that were just highways to get to the trouble spots. Luckily I have not had any problems with too much scarring or clotting issues. Conservative wins the prize for me!

I am on a full strength aspirin for 3 months post-procedure, and a baby aspirin after that. So far my longest run has been 4 months between restenoses. I am hoping to go much longer this time, but we will have to see what the vein gods have in store for me.

In the meantime I just continue to get stronger, still can't stand the heat, and stay up as late as I want! I am waiting for some test results, but plan on a long overdue blog post at the end of the week. I'll post it here when I write it.

Nicole

p.s. Cece, do you EVER sleep???

_________________
Liberated at Georgetown U. 3/3/10. Subsequent procedures at U of Maryland with Dr. Ziv Haskal 7/30/10, 12/2/10, 5/11/11. http://myliberationadventure.blogspot.com

hollyberry,
I had dilatation of both jugulars in 2007 with great improvement in my clinical condition. Two year later I experienced a return of some symptoms (not all) and I underwent dilatation of the right jugular vein with almost no improvement.
In June 2010 I had dilatation of the left jugular vein with improvement that surpassed that of 2007.
I had a doppler study last july that showed my right jugular vein to be "normal" and the left having normal flow although being smaller than the right one.
I am well and extremely grateful: my condition is improving instead of progressing.
GiCi