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Hi all, a little back story. For years I have had pain at the base of my skull. It would come and go, never gave it much thought, just put it down to bad posture at work. I could not lie flat with my head on a pillow as I know I would have pain the next day. To be honest it never impacted my life that much. The pain level was not too bad, most times a five, at times an eight.
This went on for years, on and off until recently. I play tennis and started to get dizzy turns, the room did not spin it more felt like I would fall over. Legs felt weak, at times I had to leave during games. The dizziness is now constant. The pressure and pain came back in the head, this time it wont leave, it's been months. It's a constant dull pain, does not increase with coughing etc. The pressure comes and goes, seems to hit most after I stand up from desk at work. I also have pains between my shoulder blades, which can be intense at times.
I have seen an ENT, they did VNG tests and found an upbeating torsional nystagmus on moving me down to flat position which stopped when flat. They diagnosed Bppv, did all the Epley maneuvers, saw Physio, none of it helped. Went to see Neurologist, had MRI done, they found a borderline Chiari Malformation that they feel may be incidental. Waiting for follow up appointment so I can try and request a Cine Phase MRI.
Went back to the ENT, he now says nystagmus could be Chiari related, very confusing. Sorry for the long winded back story, now for the questions.
- I thought nystagmus associated with Chiari was down beating?
- Do my symptoms sound like Chiari?
- If I have a Cine Phase MRI and it shows CSF flow is normal and no syrinx, does that mean my borderline Chiari is not causing the symptoms?.
- When I wake up in the morning the dizziness is there but the head pressure and pain is barely noticeable. The head pressure and pain seems to increase as the day goes on. The worst days are when I am inactive sitting at a desk. Going for a long walk seems to help a bit, does this fit with Chiari?. I thought exercise would make it worse.
- I live in Maine, are there any good Chiari specialist in the State?.
Thanks in advance for all of your help and advice.
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