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My husband and I went to Rhode Island for him to have the CCSVI procedure. Our only thoughts were after the procedure will be see any improvement - not even thinking that they would not be able to do the procedure because his veins were too narrow. The veins must be between at least 8mm (my husband's were only 5mm) - so they could not do the procedure. It was quite a disappointment.

If you are going to have the procedure done and are required to travel quite a distance as we did (from New Brunswick Canada to Rhode Island), try to find out, prior to your travelling, if your veins are large enough.

ScottieSue wrote:My husband and I went to Rhode Island for him to have the CCSVI procedure. Our only thoughts were after the procedure will be see any improvement - not even thinking that they would not be able to do the procedure because his veins were too narrow. The veins must be between at least 8mm (my husband's were only 5mm) - so they could not do the procedure. It was quite a disappointment.

If you are going to have the procedure done and are required to travel quite a distance as we did (from New Brunswick Canada to Rhode Island), try to find out, prior to your travelling, if your veins are large enough.

Regarding the minimum vein diameter for CCSVI treatment, this would be a great question for Dr. Sclafani's thread. I know that he's discussed small veins before, but I don't remember what his comments on this were.

NHE

I had a second opinion from the doctors in Albany NY. I asked why they couldn't just use smaller balloons. They said it was a good question and they could use smaller balloons but with narrow veins there is a greater chance of blood clots and they agreed with the doctor in Rhode Island on his decision not to perform the procedure.

o that is so sad! how in the world can people discover this too tiny veins issue in advance?

anneanne wrote:o that is so sad! how in the world can people discover this too tiny veins issue in advance?

Souldn't a doppler scan give a rough estimate of the vein diameter?

NHE

my partner had the procedure done in Germany in 2010. pain on the left side during procedure was so bad doc had to stop.

had a second doppler in Toronto. major reflux in right jug.

had a second procedure in Brooklyn. using IVUS, Dr. S discovered he left jug was as small as 4 mm in places. further looking showed the bone surrounding vein/valve was too small. that is what caused the pain. the doc in Germnay tried to balloon it but he hit bone.

in my opinion, the condition of her left jug could not be fully known without the use of IVUS.

BTW, Dr. S did perform the procedure on the left jug. he was able to go from 4 mm to 6 mm. i feel with the use of IVUS, Dr. S is able to perform this safely.

6 mm is still very very small, but an increase of 2 mm when you only start with 4 mm is pretty good. also, i am not aware of any damage Dr S discovered from the first procedure or the second. after the procedure, bloodflow was confirmed as 'normal'. the hope is that with the other work he did, a 6 mm or even 4 mm left jug will be enough to prevent further occurrence of CCSVI

DougL: Did the procedure improve symptoms any? The two doctors we spoke with gave the opinion to just wait and hope for further advances in the future.

My husband has PPMS and is pretty much a quadraplegic. Has feeling in his arms and legs - just can't move them. We were hoping that he may get a little movement in his arms.

Next step !!!! stem cell transplant???

ScottieSue wrote:DougL: Did the procedure improve symptoms any?

both procedures produced improved quality of life. most came from the first treatment however.

having said that, it was not about improvement (for me at least). i firmly believe CCSVI contributes to her MS and the hope is by fixing the CCSVI, her MS will not get worse. she prays every day to remain out of a wheelchair. part of me also believes that with improved brain health becasue of no more reflux, the brain can relearn things.

we are currently working on diet, exercise and vitamins. coming soon is Atlas adjustment (if needed). since her last procedure, her complaints have been centered around feeling out of alignment. 20 years of favoring her right side has taken its toll.