I could really use some help here. I have a 6mm malformation. A battery of rheumy tests were negative, EMG and SSEP tests were normal, MRis of lumbar and cervical spine were ok except for the malformation, brain MRI was normal, and most importantly, a cine MRI showed normal flow. In the meantime, the reason I started on this diagnostic journey was intense tingling and pain in my arms and legs, which was so bad it out me out of work. NS said that because I have normal flow and nerve tests were ok, he is not recommending surgery because he doesn’t think the peripheral nerve pain is related to the Chiari ( I saw Dr Souweidane in Ny). He recommended I get a second opinion on the surgery and get a lumbar puncture for MS. Any thoughts and comments on next steps? I just find it hard to believe that I have both this malformation and something else wrong with me. Is this common?
Thanks guys. Mandy - I did have my vitamins checked and I was D deficient and have been taking supplements, but my symptoms are still there. This is really discouraging. I’ve committed to a new attitude and on to more doctors and tests!
I was told my flow was normal also and no crowding. I saw a specialist who strongly disagreed. I had surgery in Aufusr and am doing better than in have in years. Clearly the specialist was right. Keep your chin up and keep trudging. I wish I was the only one that was written off by well meaning neurosurgeons but unfortunely this is all too common.
August surgery…not whatever word I said. Lol!
I agree about getting a second opinion and making sure the neurosurgeon reads the CINE. The radiologists read mine as normal but it was not.
My cine showed “no significant blockage” but my spinal cord was smashed to one side and upon opening the dura, there were tons of adhesions and some nerve tumors - all from the cfs hypertension. Second opinion! It’s discouraging to have a neurosurgeon tell all the reasons why you don’t need the surgery, but listen to your intuition.
Jenn
Get a second opinion the first time I went to an NS he said I don’t need it so I continued on with life in pain. Then I went back to him and he read all my info and changed his mind. That’s when I went for a second opinion at u of penn. The NS there also said yes to the surgery and after she told my family the crowding was worse then they thought. Which makes me think if you feel you need the surgery then go with what You feel.