My Big Reveal

Well, I finally got up the courage to let y’all know what I’ve been dealing with for the last few months and what my plans are for the near future.  You may recall back in November, I flew out to Vancouver, BC.  The reason I went there was to get an MRV (specialized MRI) to see if I had any issues with the veins in my neck.  For over a year now, the CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) theory for Multiple Sclerosis has been at the forefront of health news all over the world.  Dr. Zamboni from Italy has done research and studies to show that people with MS have high incidences of stenosis, pinching and narrowing of the veins in the neck.  This means the blood does not drain properly from the brain.  This causes the veins to leak blood into surrounding tissues, which deposits iron in the central nervous system, which may cause immune reactions associated with MS. 

I’ve been following this study since it began back in 2009.  I’ve done quite a bit of research on it and followed other similar studies done all over the world.  It is being shown that a balloon angioplasty procedure up through the affected veins is resulting in many MS sufferers to have relief from some/many of their symptoms.  One of the most consistent effects of the surgery is at least some relief of the fatigue that most MS folks endure.

Before heading to Vancouver for the MRV, I first had a doppler ultrasound done on my neck.  There were no significant findings from this test, but I still decided to have the more thorough MRV test, which was not covered by OHIP or my employer’s health care plan.  It made me nervous to think that I may spend $2000 on a test that may show I have the most perfect, wonderful veins anyone has ever seen.  This would mean, of course, that the angioplasty surgery would not help me with my symptoms.

It took a little over a month to get my MRV results.  I was thrilled to see that my veins weren’t normal.  Actually, one of the veins on the left was quite dainty and pathetic looking:

You can see how much larger the veins on the right (which are actually on the left side of the image) are than those on the left.  There is also a fairly large kink in my vein on the right:

So, after speaking with a few people who went to all different places in the world (Costa Rica, Rhode Island, Poland – since the procedure is not yet available to treat CCSVI in Canada) I decided to seriously consider having it done myself.  In addition to actually speaking with people, I have spent months reading blogs, personal websites and speaking with some people from the MS Society of Canada.  I really want to be sure that I am doing the best thing for my health.  There have not been too many negative effects from the surgery.  Most, if not all seem to be from problems with stents used to hold the vein open.  I will NOT get a stent, no matter what!  At least not until more research has been done on them for this treatment.

There are many clinics all over the world offering the CCSVI procedure.  I am very leery about traveling to certain countries to have it done.  Obviously I would give anything to have it done here in Canada, but since they’re not doing it here yet, my next choice is the States.  Fortunately, there are clinics in the US doing the procedure.  I have been in contact with one in Clearwater, Florida, and have decided to get the surgery done there.  Since I already have the results and images from the doppler ultrasound and MRV, I do not need to repeat the tests in Florida.  Chuck and I will be flying (commercially!) down to Orlando on April 1st.  We are driving over to Lakeland for the Sun N Fun aviation expo which has its final days on the 2nd and 3rd.  On the 4th, I have my consultation with the doctor in Clearwater, about an hour away.  I will then have the angioplasty procedure on the morning of April 5th.  I’m so excited!  The surgery will be totally worth it if it provides even a small amount of relief of my daily fatigue.  My fatigue, severe at times, has plagued me since I was eight years old.  I remember being at the mall with my mother and I would be so overwhelmed with fatigue and weakness, that I would have to lay down in the middle of the store aisle.  My mother just thought I was weird (which I was and still am), but neither of us knew the reason for this symptom.  It wasn’t until my MS diagnosis in 2005 when all of the pieces came together and I finally had a reason for all of the symptoms I had experienced since childhood.

There you have it, folks!  The cat (MEOW!) is out of the bag!  I will certainly keep you posted on how everything goes.  I will also be blogging while down in Florida, to keep everyone up to date.  Stay tuned!

Today’s symptoms:  Still a little weak today after my Tysabri IV infusion on Friday.  I’m sure it will be much better tomorrow.  Unfortunately, I have a killer headache tonight.

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