Search found 115 matches

by Nasti
Mon Feb 25, 2013 1:18 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Pain in stent site
Replies: 2
Views: 933

Pain in stent site

Hi everybody, I have been experiencing some pain in certain neck positions this last month. I feel it more in the evenings. And coincidentally, I happen to be working on the computer for at least 12 hrs a day this last month, so I am 99% familiar with the reason for the pain. I had the surgery in Ju...
by Nasti
Thu Aug 23, 2012 12:12 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: New Insights for CCSVI and MS causation, Dr Paul Thibault
Replies: 14
Views: 3777

Re: New Insights for CCSVI and MS causation, Dr Paul Thibaul

Interesting... Not that I know much about this (or anything) :), but haven't such stories emerged with many other things (e.g. nystatyn for candida) etc.?
by Nasti
Mon Jun 11, 2012 5:32 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Post if CCSVI treatment did NOT work for you
Replies: 339
Views: 152467

Re: Post if CCSVI treatment did NOT work for you

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 ...
by Nasti
Mon Mar 05, 2012 1:50 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stent fears inhibit good care sometimes
Replies: 43
Views: 3913

Re: Stent fears inhibit good care sometimes

Dr. Sclafani, what are the long-term projected dangers of stents in the jugulars? What about higher in the neck? It kind of instills uncertainty within patients when some docs used to put stents and now they non-compromisingly don't!

Thnx
by Nasti
Fri Feb 24, 2012 10:01 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: CCSVI congenital?!?
Replies: 3
Views: 934

CCSVI congenital?!?

Dr. Craig: optic neuritis happens early in MS until collaterals form and disease moves down to pituitary.

This statement kind of presupposes that the on start of MS is caused by a CCSVI event, which was not there before?!?
by Nasti
Sat Feb 11, 2012 1:22 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Montel Williams on Dr. Oz 2/9/2012
Replies: 17
Views: 3950

Re: Montel Williams on Dr. Oz 2/9/2012

This is a shame, a lot of pwMS have no internet access and haven't got a clue about anything but the CRABs, and if smb of his profile has had CCSVI and feels better and cannot find a way to share it publicly, isn't it just simple lying???
by Nasti
Thu Feb 02, 2012 2:14 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: New research into blood brain barrier/CCSVI
Replies: 6
Views: 1424

Re: New research into blood brain barrier/CCSVI

What about the thing that I read a couple of days ago, that post-mortum research of the lesions of diseased MSers showed the presence of a virus in them? Because of stale blood, the virus cells get more numerous and the white blood cells, trying to fight it of, cross the BBB and in the process of ki...
by Nasti
Sun Jan 29, 2012 1:29 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Age/disability discrimination in "MS"/CCSVI research.
Replies: 13
Views: 1207

Re: Age/disability discrimination in "MS"/CCSVI research.

When I started reading on the internet in 2006, it was like RRMS, PPMS and SPMS, today new types have emerged, like primary relapsing, etc. The line between them is so thin, it can be considered non-existing. Even when people are dx as RRMS, they still have few symptoms that linger. I had symptoms t...
by Nasti
Wed Jan 25, 2012 5:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Brain Support Cells From Umbilical Cord Stem Cells
Replies: 5
Views: 1330

Re: Brain Support Cells From Umbilical Cord Stem Cells

Isn't it like the autonomous stem cell treatment that some docs are advocating? In Bulgaria, they take some fat from your buttocks, process it, isolate stem cells and insert them back in the carotid arteries in the neck, so that they do not diffuse around the other parts of the body. Dr. Grozdinski ...
by Nasti
Wed Jan 25, 2012 5:36 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stents in the long run
Replies: 12
Views: 1321

Re: Stents in the long run

Maybe I've gone through too much, it is kind of hard to get used to being "normal" again. Part of me still doesn't believe it (for e.g. that I can have big stress (or simple trip, or going out) and have no major relapse which would tie me down for months at a time) and maybe part of me does not want...
by Nasti
Wed Jan 25, 2012 1:52 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Who has been tested?
Replies: 10
Views: 1420

Re: Who has been tested?

I have to share something I know, I don't remember whether I already have. A friend of mine was tested in Bulgaria, and dr. Grozdinski told her that her veins were 1 mm thin (like mine). And then she went to Italy and had a testing with Zamboni, who told her that she just wasn't the surgery type, th...
by Nasti
Tue Jan 24, 2012 1:53 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stents in the long run
Replies: 12
Views: 1321

Re: Stents in the long run

I smoke 2 cigarettes per month, drink 2 drinks per month, live healthy + coffee, still have low blood pressure and had my last check up in September, I believe I will have my next in September again. The thing is that, I read somewhere on this forum that past the first 30 or so days post CCSVI, ther...
by Nasti
Tue Jan 24, 2012 12:24 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stents in the long run
Replies: 12
Views: 1321

Re: Stents in the long run

So what do we do, those of us who have them? Live the best and prepare for the worst or just don't think about it?? :)
by Nasti
Mon Jan 23, 2012 2:31 pm
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Stents in the long run
Replies: 12
Views: 1321

Stents in the long run

Does anyone know, have a clue or read any predictions about stents in the jugular veins in the long run? I know that there cannot be long-term studies, but have you heard about any predictions?
by Nasti
Wed Jan 11, 2012 3:49 am
Forum: Chronic Cerebrospinal Venous Insufficiency (CCSVI)
Topic: Can veins be too small for CCSVI treatment?
Replies: 6
Views: 2646

Re: Can veins be too small for CCSVI treatment?

Sorry, I didn't answer all the questions. My veins in September were 7.5 mm the left one and 13 mm the right, stented one. Blood flow is great and I am feeling great. I just hope the feeling would last and that there will be no stent complications in the future, since there is no available long term...