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Chiari Malformation Community
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Avatar universal

Fibromyalgia now Chiari?

Hi everyone. I am a 32 year old female from Delaware who was diagnosed with Fibromyalgia 9 years ago. I have had so many symptoms including stabbing back pain, pain in my ribs (like someone was squeezing me so hard they were crushing me), arm and elbow pain and numbness, leg and foot pain with numbness in my toes and ball of my feet, extreme fatigue, pain and pressure in my right ear, pain amd swelling in my face, and terrible headaches that start in the back of my head (right side) and radiates over the top of my head and settles behind my right eye, causing a lot of pain in my right eye. I have mild sleep apnea per a sleep test done a few years ago. I have been hospitalized a few times mostly for the chest/ribcage pain and back pain but they just say its Fibromyalgia or most recently Chostochondritis from Fibro. I have had these headaches on and off for years and an MRI done just two years ago showed a muscle spasm at the base of my neck/head. Over the past year my symptoms and pain have become more extreme. I have tried just about every pain medication there is (oxycodone, tramadol, dilaudid, vicodin, percocet...) and they help for a week or so and then just stop working completely. I have also tried neurontin (which only helped the stabbing pain in my back?), lyrica (same), cymbalta (worked for a short time and kept increasing the dose with same result, muscle relaxers, sleep aids... I was also on a steroid to help with swelling and the only thing I noticed was being able to swollow and breath much easier? My dr wanted to try nerve blocking shots in my back so we did another MRI. This time it showed Chiari Malformation of 5mm. As I have been reading more about this condition, I'm finding that so many other Fibro patients are finding the same in recent MRIs? I am confused as to how it wasn't picked up 2 years ago with they found the neck spasms? Either way, I immediately scheduled an appoinment with a neurologist. I was extremely disappointed with this dr and his lack of knowledge of Chiari. He seemed to disregard and ignore my smyptoms and only focussed on my headaches, prescribing me topamax and maxalt and telling me that my chiari is only 5mm and it has nothing to do with my symptoms, its just my fibromyalgia. He added that chiari is something I have had from birth and that it will never get worse so monitoring it is not necessary. Obviously, I am getting a 2nd opinion as this is not consistent with what I have read recently.
Drs in Delaware just don't seem to know much about this condition. My question here is: Does anyone recommend a great Chiari specialist? I will go anywhere! Thank you!!!
3 Responses
Avatar universal
I highly recommend my NS, Michael Rosner in NC.  He is a true expert, the most accessible dr. I have ever had--he answers my emails within the same day, answers my numerous questions, laughs at my jokes (like when I said I had fibro from the armpits up), and sent me his outcomes on >200 patients.  He's found that ~50% of his patients had been Dx'd w/fibro, ~33% Dx'd w/CFS (as I was).
Vivian
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I would suggest u research Drs and consider a few we have on our Drs list....I do not suggest or recommend Drs as we all are diff and may not like the Drs personality, u must feel the drs experience  with chiari is as good a fit as how comfortable u r with that Dr as well....it is useless to go to a Dr that u can not stand...u will not recover as well....so see a few that u know r well experienced with chiari and go with the one that is best for u.,

Also educate urself on chiari so u can select the right one....

There r many Drs out there that will not accept chiari as the reason for ur pain, I too was dx'd with fibro, I know have a EDS dx and know that the pain I had was from that not fibro.
Avatar universal
Thank you both so very much! I really appreciate your help and support! XOXO
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