Post if CCSVI treatment did NOT work for you

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

Re: Post if CCSVI treatment did NOT work for you

Postby rena77 » Sun May 13, 2012 1:23 pm

CCSVI made my condition worse
I had the CCSVIop now nearly a year ago and since then my MS (mobility and balance) has worsened quite considerably.
Over a year ago I first heard about CCSVI. I have MS for nearly 10 years and mainly mobility and balance issues.
I spent days/weeks searching the internet. Watched endless youtube clips like the one of the lady who started dancing after her interventions or about the guy who wrote he could now walk for hours. I was exited/ hopeful. I booked the earliest date I could get in Clearwater.
Once there it was established that my azygos was 90% and both my jugular veins 60% blocked. All was cleared to a remaining 20%.
The check-up the next day showed no blockages and excellent flow (as the tests in the following months)
My walking/balance got worse. First I thought 'just have had a major intervention, you just need rest' then 'once the Plavix finished/worn off it will be better' it wasn’t.
I rang the clinic/doctor. After another check-up that established no blockage present the comment was like 'must be you. It has never happened before' and then 'it will get better, you must be patient' and then contact broke off altogether. I would have thought even negative results would be important to research for the future...
CCSVI made my condition worse. I wish I had never done it.

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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Mon May 14, 2012 6:24 pm

rena is your nutritional status optimized? you can answer via pm to me if you like, so that we don't take this thread off topic.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Post if CCSVI treatment did NOT work for you

Postby Nasti » Mon Jun 11, 2012 6:32 am

From my own experience, I would recommend waiting. It took 1,5 years of exacerbations and relapses to get to more than 1 year without any! I was kinda depressed at the beginning, I expected immediate relief, but it didn't happen for me. I guess I had to wait for the blood flow to be restored in the brain and get my energy level back, be free from relapses...
Do I feel cured, is CCSVI a cure? I'd say yes. Though I have brain damage which still causes certain problems from time to time (symptoms emergence on certain occasions), it is not the disability which I felt before CCSVI.
However, it didn't help for a friend of mine (but bees did).
I would definitely keep trying...
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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Fri Jun 29, 2012 2:33 pm

just thought i'd drop in and re-iterate a couple things from this time two years ago...

pk, and any others with negative results, have you been inputting your info on the original tracking thread?

...i personally think that this is one sticky we don't need if all the different kinds of patient experiences are logged in the main tracking thread.

i encourage everyone who is having less success with CCSVI treatment to do up a tracking item in that other thread, per the format provided. that way your story is there right alongside the positive experiences, and is easily comparable to others line for line.


i really appreciated willm's later post of july 10, 2010, where his thoughts were shared here, with a link provided to his own update in the formatted tracking thread.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Fri Jun 29, 2012 6:48 pm

Nasti wrote:From my own experience, I would recommend waiting. It took 1,5 years of exacerbations and relapses to get to more than 1 year without any!
Not sure if I understand, are you saying that at 18 months post CCSVI procedure, you were still having exacerbations, then from months 19 through to 33 you had none?

With your relapses within the first 18 months, did you find that your EDSS was stable? increasing (ie worse) or decreasing?
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Re: Post if CCSVI treatment did NOT work for you

Postby amitsachdev1 » Tue Jul 24, 2012 3:29 pm

I HAD CCSVI DONE FROM DR SCALFANI, HE REMOVED BLOCKAGE ON MY LEFT SIDE. ALMOST A YEAR LATER I AM STILL THE SAME IF NOT WORST THEN BEFORE
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Sat Aug 11, 2012 5:03 am

I am also quite a bit worse after my third procedure, this time with professor Sclafani who stented my renal vein and ballooned my azygous and jugulars. I guess they could have restenosed.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Sat Aug 11, 2012 5:27 am

curious if any of those who have had unsuccessful procedures would feel comfortable sharing whether any dietary/supplement measures have been undertaken as part of the process?
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Post if CCSVI treatment did NOT work for you

Postby dania » Sat Aug 11, 2012 5:41 am

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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Sat Aug 11, 2012 6:06 am

jimmylegs wrote:curious if any of those who have had unsuccessful procedures would feel comfortable sharing whether any dietary/supplement measures have been undertaken as part of the process?
No supplements via the dr's (baby aspirin in the long term), however, I take heaps of D and other stuff.

..edit... oops almost forgot, I also stopped taking Vitamin K since my last with Dr S.
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Sat Aug 11, 2012 11:53 am

I continue with the bit d, b 12, Curcumin,magnesium. I'm slightly wondering about the dabigatran/pradaxa anti coagulant. Maybe I'll feel better when I'm off that.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Post if CCSVI treatment did NOT work for you

Postby CureOrBust » Sat Aug 11, 2012 7:00 pm

gibbledygook wrote:I'm slightly wondering about the dabigatran/pradaxa anti coagulant. Maybe I'll feel better when I'm off that.
Not wishing to take any hope away, but personally I didn't notice any difference on or off it, but others have.
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Sun Aug 12, 2012 2:17 am

Just clutchIng at straws obviously! I think I improved a good deal after stopping enoxaparin after my recent pregnancies but that might just be the vasculature returning to normal after pregnancy. I can't quite believe that I have restenosed so soon after treatment (within 24hours). I have had such odd up and down symptoms in the last 3 weeks with a near constant ache where the skull meets the spine that I have no idea what is going on. I will need rescanning if the symptoms remain like this.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Re: Post if CCSVI treatment did NOT work for you

Postby jimmylegs » Sun Aug 12, 2012 5:11 am

hey again, re recent pregnancies, have you had a chance to get your zinc level tested? it helps your body use the vit d3 and vit b12. a family member of mine takes d3 and b12 every day, low zinc intake plus eats gluten grains regularly, zinc came back low normal and serum d3 and b12 are both down too. needs to take more zinc to compensate for intake of gluten, sugar and dairy intakes. or just balance it better. bloodwork always tells a very useful tale!
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Post if CCSVI treatment did NOT work for you

Postby gibbledygook » Sun Aug 12, 2012 5:54 am

I'm sure I'm low on zinc but it nearly always makes me Extremely nauseous. Like green tea or 2 cups of black tea, only worse!
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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