Hi, I will try to quickly summarize my dilemma and am hoping for some advice. After two years of suffering bizarre symptoms along with horrible headaches, I was finally diagnosed with Chiari I malformation by a NS at Cleveland Clnc. I had PFD surgery along with a C1 lam. in Aug.of 2010. I had total relief from the 24/7 headaches, my bal. and gait,and speech was much improved. By Nov., I reported to my NS that I had been experiencing severe cramping in my calves, urinary problems, and weakness on my right side. He felt the problem was tethered cord syndrome based upon my MRI showing a thickened filum. The NS told me I needed surgery within 3-6 months or my PFD surgery would be undone due to the constant pulling of the cord. He also stated that he was leaving CC and would let us know where to find him. It is now 6 months later, and to my knowledge he has had health problems of his own and is not currently practicing surgery anywhere. So,I made an appt. with another NS that specializes in the spine at a different location. They ran a new MRI, along with an EMG. They saw no evidence of TC, it did show a small syrinx in right side of spinal cord. The EMG ruled out ALS and Tumor. They reported their exam showed clonus in right ankle, right sided weakness, Hoffman's sign, brisk reflexes, equiv. Babinski, balance/gait, and urinary inc/urg. They have referred me back to a NL. Now I find myself with the above issues, and starting this past weekend I have begun having the CM symptoms again! They are unmistakeable; having suffered without a proper diagnosis for so long! I am experiencing HAs again, sensitivity to light, gait and bal. issues, and slurred speech at times. At any rate, my question is, would you advise finding another Chiari specialist, and do you have any suggestions of locations with a Chiari specialist close to the KY, other than Cleveland or Mayfield Clinic? Thank you so much for any help you can give.
I feel that since you had surgery already that you need to see a neurologist at this point. Your problem could be not related to the Chiari. Having said that, I am a neurosurgeon in Columbus and I do perform PFD surgery. Again, I believe you should see a neurologist as the next step though. I will be glad to see you to discuss though.
Thank you for your advice, If after seeing the NL I still have no answer, I would very much like to set up an appointment for you to review my tests and discuss your thoughts. As you know, CM is so complicated and misunderstood, I am glad to know another Neurosurgeon within a reasonable proximity that is familiar with the disorder. Thanks again.
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