It has been 10 months since our 22 year old son was treated for CCSVI and my friend Nicole suggested that I share his outcome with others, so here goes.
Our son was diagnosed with MS Jan. 09 when he was 20. His symptoms were very aggressive and Avonex was not working well so he ended up having a full blown relapse six months later. He couldn’t talk, walk, or write until he finished a course of steroids. Shortly thereafter he stared on Tysabri. The Tysabri worked, for the most part, to keep any major attack from occurring, but over the months he found himself experiencing more and more fatigue, sight issues, brain fog, and the tremor in his hand had become more pronounced.
In Nov. 09 we read about Dr. Zamboni’s CCSVI research. That’s when I began to put the puzzle together. I had always believed that our son had some sort of vascular problem, because when he ran just a short distance he found it hard to catch his breath, and he had this dark blue vein on the side of his torso that bulged out. Since these were such minor things to a doctor, and because his overall health was good, his doctor never looked into the cause.
My husband and I decided to make an appointment with a vascular surgeon to have our son evaluated for blocked veins. After discussing his symptoms and leaving out the part that he had MS…because once you say MS that’s all a doctor hears…the surgeon agreed that our son did have symptoms of a vascular blockage, and that he should be evaluated. That’s when we told him about the MS and Dr. Zamboni’s research. We gave him Dr. Z’s protocol for the sonogram and ask that they follow it. We were very lucky that this surgeon recognized Dr. Drakes name in the literature we brought him. He was a friend of Dr. Drakes so he was onboard knowing a colleague was too.
The Doppler sonogram was done at Washington Hospital Center by a tech that found Dr. Z’s research interesting so she followed his instructions to a tee, and sure enough, she found that both his jugulars seemed to be blocked. One more than the other. When we met with the surgeon after the test his whole demeanor had changed. He went from a very curious doctor that wanted to get to the bottom of a problem, to one that wanted nothing to do with it because he felt he didn’t know how to treat it. We were at a complete loss as to what to do at this point, but then decided to let our son’s neurologist in on our research. Dr. T was intrigued by the test results and a couple months later asked if our son wanted to be part of a small study they would do at GU to see if they could find stenosis in a small random group of patients using venography. Needless to say we all jumped at the opportunity and on April 28th the venogram was done. No one could believe how blocked our son’s veins were. His azygos vein was totally blocked and had to be opened using three balloon passes, starting with the smallest because it was closed so tightly and graduating two sizes larger until the surgeon saw good blood flow through it. It was the same for one of his jugulars that needed two ballooning and the other was opened with one pass.
I’m very happy to report that our son is doing great!! He wanted to stop his MS medication right after the procedure, and his doctor reluctantly agreed, but did ask him to continue the Tysabri for just two months after the procedure, and he did. He had been off all MS medication since June of 2010. Our son felt better immediately after the procedure, even though he went in completely skeptical. He really didn’t have much faith in the procedure, so we were even more convinced that it had worked when he responded so well. As we were leaving the hospital our son said to us that everything looked so much clearer to him, and that he was seeing colors and detail that he had never seen before. We found that interesting because when he was in high school he had an eye exam and the doctor found he had very high pressure readings in his eyes. He was tested for everything, and I mean everything, and they basically could not explain it. I only mention this because since his venoplasty he no longer has high pressure in his eyes which is very interesting. Another observation we made right after the procedure was that we saw the veins in our sons arms filled with blood that we had never seen before, and he was no longer dragging one foot as he walked. He also noticed how much clearer his thoughts were just hours after the procedure. The interesting thing about that is, if you were to look at our son’s grades which were always A’s throughout K-12 and his first year in college, then you would see in his second year of college his grades drop to 2.8. His drop in grades happened the year just before he was diagnosed with MS.
After being treated for CCSVI his grades point average is back to 3.9…to us that is very telling.
When we ask him today how he feels, which I’m sure we do more often that he would like, he tells us he feels like he did before he was diagnosed with MS. In other words he feels fine.
At his last Neuro appointment earlier this month he past all the tests with flying colors, and his neuro noted that he could not have gotten a 3.9 while taking 19 credits in college and participating in sailing club if there were any inflammation going on in his brain…so he believes the venoplasty worked. When I ask him why our son responded so well to the treatment, his guess is that our son didn’t have MS for long and he is young with good pliable veins so he has a good chance that his veins will remain open. That’s what we pray for everyday!!
I hope this information is helpful to those of you that are where we were a year ago, and I’d be glad to answer any questions you might have. Take Care Everyone. Your Friend, Denise