Life with MS & EDS

April 28, 2010

So close!

Filed under: Uncategorized — by mseds @ 7:08 pm
Tags: , , , ,

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!



  1. I am so sorry your words really do describe the frustration you feel. I genuinely hope that sooner rather than later when all the appropriate bureaucratical nonsense has been sorted out you will get the go ahead. You really eloquently describe the reason they have stopped the procedures and it actually does make sense. But sometimes these days its as though political correctness has gone mad. Surely if it works it works. If patients signed a waiver that they also understand that the reason for the narrowing is unknown then that would suffice for legal purpose. I do wonder with the complication of EDS whether stretchy veins are a further complication. I wonder if there is research out there somewhere on the success rate of this procedure with ehlers danlos patients. Patience is hard to come by when it seems that the procedure would improve the quality of your life. I hope time passes quickly whilst you wait.

    I am sure the MS Walk will help raise your spirits and awareness. Meeting with old friends I hope will be a much needed tonic.

    With very best wishes.

    Comment by Achelois — April 29, 2010 @ 12:16 am

  2. Ok dry your tears girl, and get your chin up and good things are going to come your way. When they stop seeing us as MS patients and just start seeing us as individuals looking for relief from symptoms then we will get the surgery. Isn’t it funny, you suffer and finally get put into a category and then it is that very pigeon hole that they use against you to keep you from getting help from maybe something that is not MS related. No, not fair. Your turn is coming. You deserve relief and you will get it. I can feel it in my slippery, slide-y, bendy bones.

    Comment by karen — May 4, 2010 @ 1:36 pm

  3. so close but so far away. at least you know you will get treated soon after they start up again. i wish i knew where i am on those lists. not fair to any of us. good luck at your ms walk. hope some of your signs push testing and Treatment NOW!! sure they need some more research but there is more than enough research and evidence to start to offer this to us. like some of the side effects to the drugs aren’t a risk? give me a break. anyway, the best to you. hope it happens soon for you. hope you keep us informed.

    Comment by jane dandrea — May 6, 2010 @ 8:49 pm

  4. Thanks, Jane! We did talk with several people during the walk and know that at least one person is following up on things. It’s amazing how many people had no idea what CCSVI even is. I guess not everyone is online actively searching for hope.

    The best bet seems to be trying to find an Interventional Radiologist in driving distance to your home. These folks have been doing angioplasty on veins for dialysis patients for years and know what they are doing. It seems easier to get them on-board than anyone in the neurology community (and neurologists generally haven’t done this procedure before.)

    Good luck on your search, too. Please let me know how things are going! We all need to stick together.

    Comment by mseds — May 7, 2010 @ 6:21 am

  5. Thanks, Karen!! Being patient has never been my strong suit, but I’m really trying hard! If I can keep my perspective, I’ll be able to appreciate that three months isn’t a long time. Three months ago I was still a the point where no one would even talk with me about CCSVI. Now I know my veins are collapsed and have someone willing to treat me. Just need to make the darn lawyers happy!!

    Comment by mseds — May 7, 2010 @ 7:32 am

  6. Thanks Achelois!! It does feel like PC gone overboard. Somewhere in my mind I know that our legal system is out there to protect us (maybe, in an ideal world), but mostly I think they are there for the lawsuits. Malpractice is such an issue here! It’s no surprise that countries like Poland are proceeding more quickly with CCSVI treatment.

    I am curious to see how the EDS side of things affects CCSVI treatment. I hope that they’ll track this as more and more people get treated.

    The MS Walk really did help my spirits! It was the first time I had a chance to talk with other MSers in person. It was also wonderful to spread the news about CCSVI. So many people haven’t heard about it at all! I made up t-shirts to help with awareness. Mine arrived from Cafe Press yesterday!

    Thanks again for all of the support! It’s really appreciated.

    Comment by mseds — May 7, 2010 @ 7:42 am

  7. Happy Mothere’s Day. I know I don’t have to say ‘hang in there.’ It’s what we moms do best!

    Comment by karen — May 9, 2010 @ 12:07 pm

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