Chiari Malformation Community
FINALLY got validation!
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FINALLY got validation!

I finally had my apt with a NS in Boston. The overall jist of it is that I was right!!!!!  The Dr agrees I do have chiari malformation however it's one of the complicated borderline cases. He feels that the herniation is only 2-3 mm, which we know is a huge deal still, however it's complicated b/c those that aren't true chiari specialists have a hard time buying into the fact that this would cause all my problems. I got the sense he isn't a true chiari specialist for sure just in comments he made. He was very wishy washy in even evaluating my MRI....definitely sees crowding and there is an abnormality there but not sure it's bad enough to cause my problems. When i asked about the retroflexed odontoid playing into the problem he sorta danced around the ? which also tells me he's not a true chiari specialist. He's definitely one who likes to "wait and see" and even claimed that he put many patients off from surgery and had his partner call to follow-up even 5-10 yrs later claiming that they had "somehow resolved all sx on their own" with never having surgery....which to me is the biggest crock ever. Chiari is a structural issue with the skull....how would that resolve without surgical intervention? Then when I asked about tethered cord screening he adamantly said he didn't buy that one bit as contributing to chiari.  I felt like he was very focused on just the MRI and his idea of symptomology was that chiari just causes a "cough headache" so surgery usually just fixes that and none of the other sx. He also tried the argument that if I only started with these debilitating sx in the past 2 yrs if it's chiari I would've been born with it and should've seen sx all along.  

He was a very nice man and I found the experience with him to be pleasant. We waited 2.5 hrs for 30 min of his time and he literally just talked to me and looked at 2 MRIs. Some NP did the rapid neuro exam on me that I always pass despite feeling drunk as I do it. She typed a few sx into the computer. Of course never read any of the stuff that I brought and I doubt that he did either. In the end, I guess I feel validated in being right, but I know that 2 mm to him may mean nothing but it is the root of all of this. He did agree that I need the cine-MRI which I've been begging for so HORRAY for him ordering that.  I did ask if there is obstruction what that would mean and he said "well then I guess it'd mean you'd be glad to have the surgery, although even with that most times I like to just follow a pt for a bit still....." Hello...I spend half my day in a recliner b/c of such severe symptoms...how much longer do you wanna follow me? So in the end I guess I'm glad I went, got validated and will get the test I need. If there is obstruction (which I'm sure there is) I don't feel like he's the guy to do the surgery. I don't feel like he has a big enough view of chiari. I still feel like I need a TRUE CHIARI SPECIALIST.  I'm praying that the cine-MRI gives the definitive info that I need to then bring to one of the other places that have a far better grasp on chiari and can move forward with surgery.
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620923_tn?1393294254

  Happy and confused for u all at the same time....as I am sure u have mixed emotions on this too,...happy for the validation and the CINE MRI....but, all the other stuff is so off the wall...ugh....'

  But this is y I say u need a true chiari specialist and even then some may want to watch u for a little bit....but it may be to see the best course of action and to see how ur body responds to some meds and treatments,...

Keep us posted as to how things go : )
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Yes, definitely mixed emotions for sure.  Many things that were said were off the wall to me from all that I've reserached. It confirmed for me that he's not a true chiari specialist...he is a NS that has done chiari surgery. There is a huge difference.  I need the guys that deal with chiari all the time and know about all the stuff that goes along with it.  I'm not sure how much watching and waiting they can do when I am so debilitated by the sx already to the point of needing to lay in a recliner half the day. But I guess the cine will be the tell all!  Hope it is soon!
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620923_tn?1393294254

  Good Luck with the CINE and do keep us posted <3
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