After the procedure...

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

After the procedure...

Postby jay123 » Thu Sep 24, 2009 3:16 pm

Has everyone stayed on an MS drug?

Also, has anyone had any adverese effects from the procedure?
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Postby jay123 » Fri Sep 25, 2009 4:31 am

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Postby MaggieMae » Fri Sep 25, 2009 4:55 am

Jay123,

I had asked this question earlier. From what I remember, Marie (mrhodes40) continues Copaxone because she also has RA, Cindi (Catfreak) continues on Tysabri, and Joan's (Cheerleader's) husband, Jeff continues on Copaxone. Lew (Loobie) discontinued his Tysabri before he had the procedure at Stanford. Arcee and Jamie's wife Mel both discontinued Copaxone and CureIous is off of Avonex. There are a few who have continued with their LDN. Hope I got this right.
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Postby Loobie » Fri Sep 25, 2009 5:27 am

I have not been on anything for about 14 weeks now. However, I'm starting up on LDN because of it's endorphin release properties. I figure I could use all the help with brain repair I can get. Hell, I should've taken that stuff for a year after college!! lol
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Postby mrhodes40 » Fri Sep 25, 2009 5:28 am

For my part that is right and I think the others stuff is as I recall as well.

Yes I had complications. You can read the post in the regimens forum marie's stents ccsvi.

I had a leaking thus bleeding femoral vein after the procedure (rare compilation), rectus sheath hematoma as a result of that, accessory nerve damage from the stent that is healing but has caused neck pain for all 4 months since the procedure (I was person 2 Dr Dake uses smaller stents now) and I got a blood clot in my leg.

I asked if Dr Dake expects to re do these stents in a few years he said no he expects them to be permanent, however cardiac patients who have stents do have repeat procedures fairly often. My personal belief is that it may turn out to be optimistic to expect these to last forever, this location and application is, after all, new. The accessory nerve pinch was not expected either...........
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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Postby CureOrBust » Fri Sep 25, 2009 6:34 pm

mrhodes40 wrote:I asked if Dr Dake expects to re do these stents in a few years he said no he expects them to be permanent, however cardiac patients who have stents do have repeat procedures fairly often.
I am guessing cardiac patients have stents to resolve blockages by cholesterol, not venous malformations. And their re-stenting is because of re-build-ups of cholesterol deposits? those cream puffs and fried food just keep calling...
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Postby radeck » Fri Sep 25, 2009 8:13 pm

So stents can be re-done in principle (say, at the heart)? I thought the vein wall eventually grows over them? Would require a lot of cutting to get the old one out, wouldn't it?
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Postby CureIous » Fri Sep 25, 2009 8:16 pm

CureOrBust wrote:
mrhodes40 wrote:I asked if Dr Dake expects to re do these stents in a few years he said no he expects them to be permanent, however cardiac patients who have stents do have repeat procedures fairly often.
I am guessing cardiac patients have stents to resolve blockages by cholesterol, not venous malformations. And their re-stenting is because of re-build-ups of cholesterol deposits? those cream puffs and fried food just keep calling...


And also to steal a bit from Marie, the veins aren't under pressure either, makes me think there is less stress all around on the jug stents, if it weren't for the fact they are in a constantly moving environment. whos says I eat cream puffs? Maybe 10 gallons of ice cream a week but that's my dairy for the week!!!
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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drugs for MS

Postby GiCi » Sat Sep 26, 2009 5:43 am

As I said before I have never taken any medications since I was diagnosed with MS in 1986. The reason of my refusal, in spite of the insistence of the neurologists in prescriving them, is quite simple:
1. The etiology of MS is unknown, although there are unproven theories.

2. The effect of all the different sorts of proposed treatment are reported as good only in a percentage of patients and are compatible with the observed spontaneous fluctuation of symptoms in MS.

3. Many drugs have side-effects

I wish to make clear that mine is a personal choice, based more on gut feeling than scientific belief, and that it does not constitute an avice to others on what to do.

As far as stents in the coronary vessels are concerned my experience tells me that a great majority of patients with stent stenosis come to me for a by-pass operation ( referred by their cardiologists because they believe that they cannot solve the problem).

I sincerely hope that Dr Dake is right in his belief that stents high up in the jugular veins are going to be a permanent solution of the narrowing of the vessel and that they can be re-done in case of failure. If he is not right the surgical procedure necessary for their removal may not be as routinary as a by-pass heart operation.

I wish to conclude by saying that having MS is an unique experience and the attitude of patients in coping with it shows possibly the greates variability observed in any other medical ailment. Thanks to the bravery of many progress is accelerating for the benefit of all.
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Postby mrhodes40 » Sat Sep 26, 2009 8:17 am

a great majority of patients with stent stenosis come to me for a by-pass operation


I sincerely hope that Dr Dake is right in his belief that stents high up in the jugular veins are going to be a permanent solution of the narrowing of the vessel and that they can be re-done in case of failure


Gici, this is where my thinking is too, obviously. He thinks it will last, but this is a new application so it is really an educated-- considering Dr Dake's experience, VERY well educated-- opinion. But opinion is still your very best guess even if it is informed by a lot of experience in other applications. I am only a nurse and have no expertise at all here and no reason to think he is wrong other than that stents in other locations are not necessarily permanent, I only want to say that people should be aware this is still a really new location to be putting stents and things may be learned along the way.

Gici can a stent such as mine which is in the high jugs holding back neck tissue be endovascularly cleaned out? If you can clean out a vein why not a stent?
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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stents

Postby GiCi » Sun Sep 27, 2009 2:31 pm

mrodhes40,
I am sorry but I do not have an answer to your question. Technology is progressing as we speak and I do not exclude that what you say, regarding cleaning up the inside of stents, might be possible.
As far as Dr. Dake opinion is concerned, I would not define it as an opinion, given that his experience is being built up, but rather as a guess based on his personal beliefs. The same can be said regarding Zamboni's present aversion towards using stents.
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Postby Jamie » Sun Sep 27, 2009 8:10 pm

MaggieMae wrote:Jay123,

I had asked this question earlier. From what I remember, Marie (mrhodes40) continues Copaxone because she also has RA, Cindi (Catfreak) continues on Tysabri, and Joan's (Cheerleader's) husband, Jeff continues on Copaxone. Lew (Loobie) discontinued his Tysabri before he had the procedure at Stanford. Arcee and Jamie's wife Mel both discontinued Copaxone and CureIous is off of Avonex. There are a few who have continued with their LDN. Hope I got this right.


That's right but Mel was due to discontinue 1 year after HiCy, it was independent of CCSVI.
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