Surgery - main results so far?

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

Surgery - main results so far?

Postby Ernst » Thu Jul 30, 2009 1:40 pm

I quess many people with ms have red this forum, and especially the experiences after surgery. I quess there are some differencies among operated people --> some have got very good results quite fast and some with slower time? Of course, this is all very very new stuff.. so this is maybe too early to ask, but I quess some things can be said already.

I list some thoughts that I have about surgery effects so far:
- Healing after stent surgery takes time, right?
- some symptoms almost disappear or become minor? (like fatigue, heat tolerance)
- effect with some symptoms is still unknown? (like ability to walk?)
- Maybe surgery effect better with RR than with SP/PP ms? Or it takes more time to heal with PPMS?
- Almost all Stanford patients have had stenosis, and two? without stenosis?
- nobody knows effect to plagues/lesions yet?
- this all is so new, that even dr's are still learning - even details about surgery methods?

Those were my main points that I have right now.. and with my limited english its possible that I haven't undersood everything. But my question was about common experiences with surgeries so far?
My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Re: Surgery - main results so far?

Postby cheerleader » Thu Jul 30, 2009 4:40 pm

Ernst wrote:
I list some thoughts that I have about surgery effects so far:
- Healing after stent surgery takes time, right?

Yes, at least 6-10 weeks
some symptoms almost disappear or become minor? (like fatigue, heat tolerance)

Yes, for some people there is immediate relief in fatigue and heat intolerence
effect with some symptoms is still unknown? (like ability to walk?)

So far some have seen improved vision, improved hearing, less spasms, less pain, less dizziness, improved balance and ability to walk, more sociability, more sweating, better sleeping

Maybe surgery effect better with RR than with SP/PP ms? Or it takes more time to heal with PPMS?

still too early to know
Almost all Stanford patients have had stenosis, and two? without stenosis?

Out of 25 patients (not all are on the forum) only one did not have stenosis. All others had at least one venous site of stenosis, some as many as four.
nobody knows effect to plagues/lesions yet?

There was no change in lesions on Jeff's 2 month MRI. It is still too early.
this all is so new, that even dr's are still learning - even details about surgery methods?

It is an ongoing process. Still very early.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Thu Jul 30, 2009 7:31 pm

Now here's a wonderful thought, perhaps if this is THE answer all the money and PROFIT can go into research and drugs/treatments that regrow nerves, axons etc.
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Postby Arcee » Thu Jul 30, 2009 8:21 pm

Ernst wrote:
I list some thoughts that I have about surgery effects so far:
- Healing after stent surgery takes time, right?

Cheer wrote:
Yes, at least 6-10 weeks

Just wanted to chime in to say that while the healing in a sense may take that much time, and the coumadin part of the healing for sure, my experience with healing/pain/recovery has been, thankfully, remarkably easy. I had one stent put up high in my left jugular, and was off pain killers in a matter of days. I honestly - - don't hate me Lew :wink: - have not even had a twinge for a week. My surgery was on the 15th. So healing can mean different things, and people are having a range of experiences with it.
I should also add, since I haven't done the signature thing yet, that I am RRMS with no real EDSS to speak of and maybe that played into my post-op experience.

EDIT: I can't get the quote thing to work. Sorry, am in a rush. And also, I too agree with Joan's summary, and can't wait to read one again in a month and in a year![/quote]
Last edited by Arcee on Fri Jul 31, 2009 5:35 am, edited 1 time in total.
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Postby mrhodes40 » Thu Jul 30, 2009 8:47 pm

I think the location of the stent matters a lot as well as what other tissue is nearby that place.

my right stent did not really stop hurting until this week and I am not wimpy at all.

I am SPMS and I am not walking better yet, though I have a feeling I may get there. However on the other thngs as cheer mentioned I agree 100%.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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