Friday, September 16, 2011

MS Is My Homework Assignment

NOTE:   CCSVI stands for "Chronic Cerebrospinal Venous Insufficiency".  It is a vascular condition where there is obstructed blood flow in the veins that drain the brain.  The blood may reflux up back into the brain and spinal cord, causing damage.  It is a term originated in 2008 by Dr. Paolo Zamboni, a vascular surgeon and researcher in Ferraro, Italy.  His basic hypothesis that vascular issues are linked to MS is not new, there are multiple scientific reports for same, dating back over 150 years.  For more excellent CCSVI information, I invite you to visit, and

Exactly seven months ago, having tested positive for venous obstruction, I was lying on a hospital gurney, being wheeled into the OR for the venoplasty treatment.  From my horizontal perspective, the room looked like a big industrial kitchen, such as one would expect at a Four Seasons Resort.  There were at least a dozen medical people, everything looked stainless, and state of the art.  How could I be the only patient in this room, could this all be for me?!? Such is the beauty of modern medical care.  The whole team prepped, prodded, monitored, and spoke with me: nurses, surgeons, other unidentified persons, and anesthesiologists.  All personnel were crisply uniformed, and focused.  I was very interested and wanted to watch it all, even though under mild sedation.

I literally WAS the show.  My CCSVI procedure was being filmed and shown live to a group of 600 visiting physicians, gathered in a grand ballroom at a nearby resort.  Their host was my surgeon.  I had previously signed a release agreeing the filming.  Even without any royalties (Ha!) it was my small way to bring this new treatment to a wider professional audience.  My surgeon was a world-renowned heart specialist, born to use a scalpel, and he inspired nothing but complete trust.  He personally had become interested in CCSVI, had flown to Bulgaria for training, had met Dr. Zamboni, and had performed 70 procedures, thus making him the shoe-in choice.  While his hands were busy snaking the catheter around inside my veins, he was talking through the procedure for the audience.  Another doc stood by my head, advising me when to breathe in and breathe out.  There was double of everyone, two pain docs were nearby and whenever I signaled discomfort, they would administer some pain relief into my IV drip.  (After, in his written report, my doctor said I tolerated the procedure very well, to which I agree; for me it was a piece of cake.)

Many people with MS debate where to go for the CCSVI treatment.  Canadians must go out of country, a very unfortunate circumstance.  I was fortunate, my neighboring state of California had two likely places, and there is a Health Institute down in Baja for the vacation-minded.  But, I had corresponded via email with a Canadian MS Charity, and they responded right away with the name of a local Heart Hospital, right down the freeway from my home.  Geez.

I spent a bit of time down at the hospital, before and after, and had a chance to speak with hospital personnel.  They said that MS patients had become their favorites;  we were the most upbeat, the most grateful type of patient.  The nurse reiterated what I had known, some MS patients experience very high gain after treatment. Some feel symptom relief while still on the table.  This last is what astounded my surgeon the most, and what lead him to get Institutional Review Board (IRB) approval to offer the treatment.   I expected little, but hoped for the best.

My husband, a few friends and even one CCSVI alum were all gathered down in the hospital cafeteria, which they had virtually to themselves. Because of the doctors' Conference, no patients were scheduled that day, and my band of supporters had the place and staff all to ourselves.  Everyone was helpful and personable. I noticed I was still weak and unsure of my footing when I got up and walked around.  Discharged as sunset, it had been a very long day.  I was assured that if anything should come up, I should consider this my hospital and come right back over.  But, being a venous procedure, she doubted any complications would develop.  I left with no scripts, and a post-operative follow the next morning with my surgeon.

Back the next day we went.  I was not feeling any better or worse, and told them.  I think they were a little disappointed.  We posed for pictures with the two doctors.  I was wondering about scripts to fill, further follow-up, and insertion-site healing.  There were no scripts, no further in person follow ups.  My insertion site healed in a few days, like a mosquito bite would.

Back home, I monitored myself almost obsessively for healing.  And, I experienced some in the most unimagined way.  My left arm, the MS problem side and where the jugular stenosis was found, got transformed.  Much of which holds to this day - seven months out!  I'm left handed, and had been unable to write longhand for many months.  The pen would just drop out of my hand.  My range of motion was diminished, the muscles had shortened; and I was having trouble raising my left arm over my head or out to the side.  If that weren't enough, I could no longer sleep on my left side.  All this was healed to a great extent within days.  Now, I use my left arm and marvel at this little miracle.  There was a teasing of other improvements, but, sadly, they did not "stick", and some are still worsening.

There never comes a guarantee with CCSVI treatment. All people with MS opting for this new treatment should know this before being wheeled into the OR.  MS manifests itself differently in each individual, and CCSVI outcomes also manifest differently.  Although the top doctors, researchers and physicists collaborate and share information, it is very new and there is no one standard of treatment.  Variables in treatment protocals are being openly discussed at many medical conferences.  Patients, like me, and our caregivers need to keep up our end with healthy life style choices.  I am astounded that I was helped to the extent I was; that my blocked vein was opened by a tiny balloon which translated to relief in my whole left arm and shoulder.  But am I looking for more, Yes. I do want, simply, to be totally well.

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