CCSVI and MS Seminar in Albany

A couple of MS friends and I hit the road tomorrow afternoon for a trip to Albany’s performing arts center, the Egg. We are attending a Roundtable of speakers who will be discussing the topic that is more and more prevalent in this blog and all over the web: CCSVI. Those initials, to review, stand for Chronic CerebroSpinal Venous Insufficiency. Simply put, the veins that drain the brain are compromised in some way. A new theory says that it is possible that this problem with the veins can affect those with MS and might cause progression of the MS. I really shouldn’t  use the words ‘might‘ and ‘possible‘, because from what I’m learning and experiencing myself,  the evidence is mounting that there is direct correlation between MS and CCSVI. But there is such a controversy brewing that pits neurologists, hospitals, pharmaceutical companies and the Nat’l MS Societies against vascular doctors, interventional radiologists and researchers. In the middle are the patients who are waiting for the day when they can wake up and say, “Wow! I feel good again today!” They wait for their days to be productive and joyful; days when they can move without stiffness and pain.  But there are Many more Symptoms that drag us down and make it difficult to live that kind of life, even with the newest medications. We want answers and a chance for productive and joyful lives.   Treatment for CCSVI seems to be part of that chance.

Which brings me to  this:  I received a phone message from my neurologist last week. I had sent her a flyer/invitation to this event and included a small note about my last procedure in Albany. Her message was clear: she was disappointed that I’d had one venoplasty, let alone preparing for the second because she didn’t think it would affect my MS.  She added that, “You have a mind of your own”, and said she would respect that and be available for me if I needed her.  I was a little bummed, not only because she has been my security blanket for almost the whole 12 years of my MS struggle, but because I want her to be excited for this new development that will give so many a better quality of life!  People who’ve been liberated talk about ‘outing’ themselves to their neuro. Now I understand what they mean!!

So tomorrow, I will be thrilled to see and hear everything that goes on in the Egg. I’ll meet more people who’ve been liberated and get inspired to keep going forward with my journey.   I believe this is the beginning of a new understanding of a disease that has been nortorious for its mystery.  And even if people aren’t really running from all directions to bring in new pieces of the MS puzzle, I feel like they are.  Tomorrow, I’ll see if that is true.




2 thoughts on “CCSVI and MS Seminar in Albany

  1. Go for it, Donna! I am so proud of you! It is so sad how doctors are territorial and unwilling to think outside of their own little domain. I am having the same problem with my brain issue. Everything on the internet points to one thing and the doctors are staunch that this obvious mass in my head that has obviously grown in the last year is “nothing to worry about.” Great – let’s grow it in YOUR head. I am looking into GammaKnife . . . and I am sure my REAL doctors will laugh me into the Gulf . . . better than rocking me into the ground and/or letting me just exist with these ridiculous symptoms day to day.

    Love you Donna!

  2. Dear Donna – I too have MS, and have just starting blogging. AND…I know of the “Egg” as I live very near. I am so upset with myself for missing the anouncement for the event this week 😦 I have not studied up on the new procedure and would have liked to have attended. I would like to get in touch, please contact me when you get back. I wish you all the best with your treatment this Friday!!!! Colleen P.

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