QUESTION: No Change One Week Post-Op- Did anyone get better?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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hargarah
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QUESTION: No Change One Week Post-Op- Did anyone get better?

Post by hargarah »

Hello,

I had my procedure done in California exactly one week ago.
I felt minor changes in standing and walking, but nothing major.

Did anyone feel very little in the beginning, but saw significant improvement after some time?
I have RRMS and can still walk, but have problems with Gait, Balance and Water (Shower) Intolerance?

I would really like to know how long it took because I feel like I have hit a wall!

Thanks,
H.
Cece
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by Cece »

I think it's possible, especially if you had minor changes rather than absolutely no changes. I had some obvious improvements right away, but then also experienced gradual improvements that caught me by surprise later on. The immediate improvements might be the result of improved blood flow and oxygenation, the gradual improvements the result of neurological healing due to those better conditions over time. If you don't hear from anyone here, you can ask at CCSVI Locator or facebook too. We used to talk about people having more gradual improvements; they were in Dr. Siskin's middle third (one third with moderate or wow improvements, one third with mild improvements, and one third without improvements). How many veins did you have treated? Do you know how badly blocked they were? Balance is a common one to improve after CCSVI treatment, and so is heat intolerance. Are you feeling rested and recovered from the procedure and travel itself? Health and healing wishes....
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MrSuccess
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by MrSuccess »

one week is really too soon to fairly evaluate outcomes -good or bad-

Dr.Zamboni's original 65 pwMS had a 50% ??? restenosis rate. Those that recieved a second CCSVI procedure ..... reported improvements from 4 hours to 4 day's later.

That's how I remember it .....

I could be wrong .... I am once in awhile. :wink:


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DougL
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by DougL »

hargarah wrote:I would really like to know how long it took because I feel like I have hit a wall!
hi H. glad to hear the procedure was a success.

there is no answer to your question about how long. no one really knows enough about CCSVI yet.

do everything you can to keep those veins open and flowing. give your brain the best chance to heal.
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hargarah
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by hargarah »

I had my Azygos and both Jugulars. So it has been 10 days? So there is a 50% chance that they may have re-stenosed already?
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by PointsNorth »

Hi H,

Treated twice, improvements lasting exactly 1 week each time for me. You're not alone!

PN
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dania
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by dania »

PointsNorth wrote:Hi H,

Treated twice, improvements lasting exactly 1 week each time for me. You're not alone!

PN
I would really like to know how many have had angio and restenosed. With Zamboni I believe it was 45%? If that is true it is not a good thing in my books.
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blossom
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by blossom »

dania, that's a very good question, and i agree that's not good odds. the repeats come at a cost of more chance of intimal hyperplasia and damage. the physical damage and also the financial damage. some had to scurry to get the finances together for the first teatment. i'd be willing to bet there are quite a few in trouble and don't know what shape their veins are now in and even if they know can't do much about it because of finances.
Jan43
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Re: QUESTION: No Change One Week Post-Op- Did anyone get bet

Post by Jan43 »

Hello

Procedure done 4 weeks ago in Australia. IR said one third restenosed - in my language that's 2 thirds didn't !
After 4 hours: rush of warmth to lower legs and feet - feeling alive rather than lead-like
After 3 days: noticed colour in thighs - healthy look in the top half has since been commented on
Sensing slow improvement in balance / stability
Expectations realistic but excitement is high
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