Life with MS & EDS

April 28, 2010

So close!

Filed under: Uncategorized — by mseds @ 7:08 pm
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I was so close to getting my veins open!  Just 40 hours before surgery, I was told that the doctor (my interventional radiologist) was informed by his lawyers that he needed to stop performing angioplasty on MS patients.  Yesterday morning, a woman was in the OR with the IV inserted when the lawyers gave the order to stop immediately.  The doctor was informed he had to go through the hospital’s internal review board (IRB) for approval before proceeding.   I found out via Facebook and was instantly in tears.

I spent most of last night crying.  I was kicking myself for not asking for an earlier surgery date, very frustrated and angry that I missed what was a smaller window than I expected. I couldn’t understand why they’d stop something that this doctor had been doing for decades.  I wanted to know how they discover blocked veins in other types of patients. What symptoms make them look for this? I bet we have the same exact symptoms.  So, if the procedure has been used to treat those symptoms, then why are we different? It felt like discrimination.  I’m not asking for this as treatment for MS.   I just want this to improve my blood flow.  I want this to bring up my low pulse ox.  I want this to improve my fatigue.  I have no expectation that this will stop lesions from growing (that would be a nice extra benefit, but I don’t expect it.)  I just want to improve my quality of life.  I couldn’t understand why this is different in any way or why it needs to go through the hospital’s review board.

I called the doctor’s office first thing this morning and he called me back around 9:30 to explain.  I asked the very questions I couldn’t stop thinking about last night and was given answers I suppose I can understand.  The doctor explained that while he was unhappy about having to stop for now, that he thinks the IRB members are educated, reasonable people and that once everything is documented, that he’ll be allowed to proceed.  He expects the process to take two to three months.  He needs to write a more detailed consent form.  I asked him why this is different from his other patients.  He said that his dialysis patients have narrowed veins because of scar tissue build up from their catheters, which puts pressure onto the vein.  In MS patients, we have “virgin veins”.  There’s no known external reason for our veins to narrow.  Research still needs to be conducted.  So, until the cause is known, they need to adjust their consent form to acknowledge this gap in understanding so that patients can indicate that they are okay with this and so that the lawyers can cover their asses.

I’m still feeling every negative thing you can think of, but I’ve stopped crying, so I suppose that’s progress.  I’m trying to focus on the likelihood that this is just a setback, not an end of the road.  I asked what those of us who are waiting can do to help and he said raising awareness about CCSVI through blogging, Facebook, talking with others, etc. is about all we can do right now, so that’s my plan.  I’m doing the MS Walk this weekend with old friends and new ones (including a new friend who was fortunate enough to have had the surgery last week.)  We’re going to make signs and posters demanding that the MS Society do more to support CCSVI research.  We’re on a mission!

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