NEGATIVE OUTCOMES

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

Postby shucks » Mon May 09, 2011 5:20 am

3girls,

How long since you procedure? I am thinking of it, but there seem to be as many bad stories as good. If you still feel better, has it been longer than 2yrs?

thanks
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Postby munchkin » Mon May 09, 2011 7:15 am

Dania

Have you been in contact with Dr.McGuckin? He has used radiowave technology to open an occluded vein (no stent) on an MS patient. There is an abstract on his procedure. I'm pretty sure you will have to type this in.

http://ccsvism.xoom.it/ISNVD/Other/Abst ... guckin.pdf
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Postby 3girls » Mon May 09, 2011 7:19 am

shucks, I had the angio done in August. If I could be honest, knowing what I know now I'm not sure that I would have had it done because I think that in my case I might have been able to control MS with just diet, massage, etc., but I would never have learned that if I hadn't first done the angio. In other words, having the angio was what I saw as my only hope and I didn't get immediate results which caused me to push harder, learn more and try new things. It was sometime in November when my symptoms all cleared up but I was taking very high doses of fish oils and B12 as well as a very clean gluten-free (etc.) diet at that time. So I can't say for sure that the angio is what caused my healing. But, I do feel confident that I can keep the symptoms at bay and I am not afraid of MS anymore. Hope that makes sense!
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Postby dania » Mon May 09, 2011 8:11 am

munchkin wrote:Dania

Have you been in contact with Dr.McGuckin? He has used radiowave technology to open an occluded vein (no stent) on an MS patient. There is an abstract on his procedure. I'm pretty sure you will have to type this in.

http://ccsvism.xoom.it/ISNVD/Other/Abst ... guckin.pdf

Dr Arata already tried burrowing through, and he said RA treatment will not work for me. Thanks anyways.
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Postby coach » Mon May 09, 2011 12:13 pm

What if as a patient who has had the procedure your symptoms you are dealing with now is not tingling in the extremities but balance issues that never improved and may be some worse now as well as what I call a swimmy-headed feeling. Kind of like being drunk but I don't drink (maybe a few times in my early 20's). My head is kind of full feeling. Stents were fine when I had my 1 yr f/u in Nov. 2010. Having more trouble with the headaches than immediately post op. Excedrin migraine seems to help. Will diet changes help balance problems? Has anyone had experience with this?
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Postby jimmylegs » Mon May 09, 2011 5:53 pm

fyi 3girls, gluten free diet brings up your zinc level. kids with and without celiac disease see increased serum zinc on gluten free diets.

you can get nutrition from foods with gluten, but if you do it's harder to keep your zinc levels up so a supplement may become necessary.

a study of healthy controls in a low gluten society (thailand) had average serum zinc levels near 18 umol/L. on a western diet including lots of wheat, healthy control zinc levels are lower.

ms patients are known to be low on zinc. you can boost your stores by supplementing zinc AND/OR avoiding gluten.

i used to react badly to bread but i figured out with bloodwork that i was zinc deficient and supplemented to correct. now i can eat bread with no side effects, but i do so sparingly. FYI!
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Postby dania » Mon May 09, 2011 7:51 pm

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Postby dania » Tue May 10, 2011 5:53 am

Comment by Dayle
I am having same problems. First time did well but symptoms began to return after 2months. Had second procedure at 6 months with NO benefits !!! Are progressing worse and worse. Is this the disease progressing at its ugly pace or is it the procedure gone wrong? or re-stenoses.

Lost, depressed, confussed and frusterated.
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Postby dania » Tue May 10, 2011 5:57 am

Comment by Alice M.
I have had 2 procedures and now left on what to do next. First one was great, second was and still is a struggle. No major improvement am now worse than before. I will continue to take it a day at a time.
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Postby Lyon » Tue May 10, 2011 6:08 am

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Last edited by Lyon on Wed Jun 22, 2011 5:05 pm, edited 1 time in total.
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Postby dania » Tue May 10, 2011 6:12 am

Lyon I made the exactly the same post "Negative Outcomes" on CCSVI Locator. Those were some of the replies I got.
http://ccsvi-ms.ning.com/?xg_source=msg_mes_network
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Postby Lyon » Tue May 10, 2011 6:18 am

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Last edited by Lyon on Wed Jun 22, 2011 5:06 pm, edited 1 time in total.
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Postby Cece » Tue May 10, 2011 1:24 pm

By pm I have heard from a kind and wonderful woman who ended up with 2 occluded veins after a procedure last fall. Follow-up procedure was done but neither could be entered. It's really upsetting.

Also by pm, I heard of a patient who worsened the evening of the procedure (starting with a severe migraine).

Some of the following seems to be risky:
* having a hypoplastic vein ballooned
* having too large of balloons used for the size of the vein
* having veins with prior radiation damage ballooned
* having stents inserted

Anticoagulation is an unknown too.
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