After eight years of living with chronic Lyme disease coupled with my MS, I finally feel that I have dealt the spirochetes of Lyme a major blow. The symptoms of tick-borne illness are not entirely vanished, but the lingering evidence is fading month by month. I am left with neurological compromises from both illnesses. The MS Recovery Diet has been the one factor that consistently supports me in living my life- but I know that I can recover further now that the Lyme is no longer front and center.
To that end, I decided to explore having the CCSVI procedure done for myself. I felt that I wanted to try anything that might support my recovery efforts. If I was blocked in the drainage of blood in my jugular veins in my neck or the azygous vein behind the sternum, I wanted to know about it. If they were not blocked, then I would have the information I needed to continue to pursue alternative routes. Having personally spoken to several patients, I am well aware that responses from folks who have had this procedure done have had a large variety of physical reactions- from dramatic improvements that either last or fade, to feeling slight improvements to feeling worse than ever. I still wanted to know if I had this problem or not.
I am very fortunate because one of the two doctors trained to do this in the U.S. works only an hour away from my home. I had an initial sonogram done of my jugular veins that showed nothing, which I was told is typical. Yesterday I went to have the three venograms done. I knew that if a blockage or stenosis were found, they would use a balloon, or venoplasty, to open one or two of the blockages. I already had another appointment scheduled should I need another venoplasty for the third vein.
I received a contrast dye (the same used for a colonoscopy) via IV along with a mild sedative as they needed me awake for the procedure. It was mildly uncomfortable for me when they made the incision in a vein in my groin and inserted the catheter. Then they snaked a camera up into all three suspected veins. It turns out that I was 80% blocked in my left jugular vein. I was 60% blocked in my azygous vein but the vein was twisted like a ribbon and drained blood very, very slowly. They did venoplasty on both of those veins (uncomfortable during the balloon inflation that lasted only seconds) and the drainage time on the azygous vein went from 36 seconds to 6 seconds after the procedure was complete. This all took an hour. Then they kept me lying down for twenty minutes in recovery before sitting me up, letting me eat, and then home I went.
I go back in two weeks to have the right jugular vein opened as that was 80-90% blocked. The results? I immediately felt less numb on both lower legs beneath my knees. By last night, sensation increased up to my waist. By this morning, I feel lighter and less numb everywhere. For me, when I have more sensation, I create exercises to harness those new feelings and work hard to strengthen my muscles. I work on creating more flexibility and greater balance and coordination. I can FEEL my body working where yesterday it was more of a mental exercise to move in spite of receiving less feedback than I have today. Improvements in heat exposure, cognition and fatigue are common results for most CCSVI patients.
Dr. Mehta in Albany, NY is very enthused about helping MS patients in this way and is doing all he can to legitimize CCSVI for the medical profession. He is conducting a study to determine placebo effect vs. the procedure. I am too old to be part of his study, but felt I contributed something to his knowledge already as he had never seen a twisted azygous vein like mine before. Is this congenital? caused by MS? caused by other kinds of inflammation? caused by a trauma of some kind? Is it a result of outside pressure from a bone or artery that touches the vein? Nobody knows. All of this is experimental work and by no means a sure protocol for anyone yet.
They do know that the stenosis is related to a build up of iron whether from blood cells or damaged brain cells. There is no one theory as to why this iron affects attacks or symptoms. There is also a possibility that the build up of iron may contribute to the breach of the blood brain barrier that allows the immune system in to attack the myelin. This is an exciting new exploration but doctors are a long way from satisfying answers. New research is ongoing. Yesterday in the clinic my husband met a CPMS woman who does stem cell therapy in Germany, and others who had the full array of symptoms- and all of us were just asking questions and hopeful that CCSVI might lead to thinking of it as the ‘liberation technique’ that the originator, Dr. Paolo Zamboni, has labeled this.
I will keep you posted as to the results for myself especially after I have the right jugular opened. Will this last? Will my azygous vein re-twist? Will the veins block up again? Can my diet and exercise help to keep them open? Will I gain significant improvements in my recovery? To be answered. This is a very personal decision and if my veins do close back up again, the benefits of having a local doctor to help me is invaluable.