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Seeking care for intracranial hypertension: Rare Brain Disease
Visiting Mayo Clinic | Last Active: Mar 20 7:26am | Replies (22)Comment receiving replies
Mayo does have specialists in intracranial hyper and hypotension in both Rochester and Jacksonville. I go to Jacksonville to see a Neurologist who specializes in this area. In Jacksonville she is identified as a headache specialist. It took me a while to find her. In my case the pressures are inconsistent and the lumbar puncture was not clearly indicative, but my symptoms were. Through trial and some error my headaches have lessened considerably. I hope this helps. Don’t give up! Your quality of life is worth the effort.
Replies to "Mayo does have specialists in intracranial hyper and hypotension in both Rochester and Jacksonville. I go..."
@tbgreif625 I am grateful that you told me this. I was interested in how my surgery looks and not dealing with pain. I wanted to know how to prevent having a stroke in my stent. I am so glad you told me. I did not understand why they didn’t want my surgical records. Pain is much worse post stent but they deal with it and it’s good enough. I am so glad I didn’t waste a trip for this. Locally my disease was missed for a long time because they didn’t look for the cause of the pain. I am so so glad you told me and the person I spoke with was unprofessional this time. Bad things can actually be good.
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Thank you. I have a headache specialist here and when I’m healthy enough get injections from that doctor to lessen the pain. I am glad to hear it is pain relief. What I was intending in was finding out the status of my stent. It doesn’t seem even worth it to go then, I wanted to see if I needed my surgery corrected or if there was a way to stop the vomiting. I just wanted my life back. Pain they treat here. I had surgery for prevention of total blindness.