Chiari Online Support Group

Finally found my neurologist!

After seeing several neurologists & neurosurgeons who couldn’t help me, I finally found THE ONE! I’ve been trying to find help since last August when I could no longer hide my symptoms & pretend I was fine anymore. Out of desperation, I began mailing packets of my recent reports to neurologist on the list my insurance company sent me with a letter attached asking if they can help. I ended up with a referral to my current doc from the 3rd neurosurgeon I’ve seen, but I did get a response from 2 of the 4 packets I sent out! One neurologist read everything & said I need a neurosurgeon. The 2nd said he can’t help me & that based on my reports, I should go to the Mayo Clinic.
I’m grateful they called to tell me rather than have me waste more money & time only to get the same answer! I’m grateful to have a neurologist now who actually cares, listens & is already helping me! She’s referred me to audiology for my hearing loss, prescribed something to help my neuropathic pain, ruled out MS & tumors! She assured me that my Chiari doesn’t need surgery at this time (which is what the neurosurgeon stated). She said that her other Chiari patients have weird symptoms too. A few months ago, I asked my PCP for AChR & MuSK antibodies (to check for Myasthenia Gravis) but I didn’t know about the Modulating test until it was too late. Well, this wonderful neurologist drew labs to check for it without me having to ask! Such a relief to find someone who takes the time to treat their patients without rushing them through!! I cried tears of joy when I realized she is going to help me! This beautiful soul is going to keep a watch on my Chiari also to make sure it doesn’t herniate more! I finally have hope again & peace in knowing I am finally in the hands of someone with Chiari knowledge & experience! If you’re struggling to find a doc who will listen & take your concerns seriously, please don’t give up! Keep searching! They are out there!

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