Restenosis or Not????

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

Restenosis or Not????

Postby sgriff » Mon Sep 20, 2010 7:19 pm

Hope someone with experience can give their opinion on this matter. Husband had procedure 6 weeks ago. Saw moderate but notable improvement in leg strength, energy and cognition. Saw significant improvement in bladder retention. No improvement in gait. Now over the last 3 weeks, the improvements are waning. His bladder problems are returning, he is tired in morning even after good nights' sleep and his ankles are turning red again. Told Dr. this and he said "sounds like classic restenosis".

Here's the confusing thing - Over the past 2 weeks, he has had a couple of occasions where all of the sudden, his walking is really good! It is fleeting and only last a couple of hours. I am having trouble reconciling these experiences with the possibility of restenosis.

Any thoughts?
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Postby Cece » Mon Sep 20, 2010 7:31 pm

If the doctor said classic restenosis, I'd side with him. It's what it sounds like, especially because the improvements lasted for three weeks. That's a long time and less likely to be placebo or 'shocked brain' or some of the other possibilities.

The occasional moments of good walking could mean that he hasn't returned all the way to whatever percentage his original stenosis was, so there is still improvement in flow, but it is not at its most open as it was right after the procedure? That is my best uneducated guess....
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Postby sgriff » Mon Sep 20, 2010 7:34 pm

Thanks so much.
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Re: Restenosis or Not????

Postby newlywed4ever » Mon Sep 20, 2010 7:53 pm

sgriff wrote:Hope someone with experience can give their opinion on this matter. Husband had procedure 6 weeks ago. Saw moderate but notable improvement in leg strength, energy and cognition. Saw significant improvement in bladder retention. No improvement in gait. Now over the last 3 weeks, the improvements are waning. His bladder problems are returning, he is tired in morning even after good nights' sleep and his ankles are turning red again. Told Dr. this and he said "sounds like classic restenosis".

Here's the confusing thing - Over the past 2 weeks, he has had a couple of occasions where all of the sudden, his walking is really good! It is fleeting and only last a couple of hours. I am having trouble reconciling these experiences with the possibility of restenosis.

Any thoughts?


I have experienced very similar and I believe what Cece says has merit. Because I still have retained some improvements (energy, balance), I've decided to wait and see what my 3 mos checkup says (providing I can find a place or, possibly, back to Albany). What did his doc advise? Perhaps we have the same Dr.
I hope others comment on this thread
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Postby sgriff » Mon Sep 20, 2010 8:00 pm

Hi Newlywed,

Well, I failed to tell the doctor about the moments of "good" that he had because I sent the email this morning and he happened to have another one today. So, he didn't get the full story. I just told him about the waning of symptoms and he said "classic restenosis and you can make an appointment to repeat the procedure if you like". We used a Florida doctor. We live in Baton Rouge. I am torn between wanting to hop right back on a plane and get my husband some relief and waiting a couple more months. I think I will at least see how the next 2 weeks play out. I mean, at what point does the insurance company say - enough!
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Postby sgriff » Mon Sep 20, 2010 8:28 pm

CeCe or anyone -

Could I get your theory on this issue? In regard to permanent damage - I am thinking (hoping) that since Tommy has had those moments of walking so well, maybe that is an indicator that he has not realized permanent damage in that area. He has, after all, had MS for about 30 years! You would think there would be permanent damage. But since he has had those fleeting moments of better walking, maybe with a repeat procedure, he could realize improvement there.

I know no one knows for sure - just asking for theories.
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Postby Cece » Mon Sep 20, 2010 10:46 pm

I am an optimistic person, so take this with a grain of salt! But yes if he is having bouts of walking as you describe, that seems hopeful to me. CCSVI knowledge is in its infancy; with different doctors doing different things, what are the odds for each of us that we got the 'right' or best treatment? They just don't know how yet, nor do they know how to make the angio fix last. But I believe that for some people, abilities that were thought to be lost are able to be recovered, depending on if the nerves are dead or merely compromised due to lack of oxygen.

Even after the procedure, there is also the potential to remyelinate, again if the nerves are not dead but damaged.

It's interesting that the walking improvements weren't there immediately after the procedure but showed up a month later, when other improvements were fading. How do you explain that! Some remyelination of mobility-involved nerves, such as the spinal cord? If it was related to blood flow alone, you'd expect it to be immediate; an improvement that shows up after a month would seem to be neurological healing?

Whatever the case, I wish him the best and that the repeat procedure, if that's what he chooses, does even more.
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Postby sgriff » Tue Sep 21, 2010 6:17 am

Thanks so much for taking the time. It makes sense to me too.
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