I'll try to make this as brief as possible. Minor auto collision January 2012, primary care physician thought I had whiplash, after about 6 weeks changed diagnosis to post-concussion syndrome. Treated me with pain medication, muscle relaxant, and headache medicine.
First MRI in April 2012, showed bulging discs.
May 2012 first NL appointment, and the doctor did not want to discuss my neck pain, only the headaches, he prescribed Topomax, even after I told him it didn't work.
Started to see a pain specialist in June 2012 for cervical injections. This doctor wanted to start treating me for Lyme's disease even though all my labs were fine.
Continued with cervical injections & pain medication through January 2013, and when I told my primary car physician that my short term memory was bad, another MRI was ordered and showed a Chiari Malformation 6mm, and suggested a CSF flow study.
February, I went to a second NL who completely ignored the MRI of Chiari and said I had a pinched occipital nerve and ordered bi-lateral nerve blocks.
I found a NS in Indy and went to him, he ordered a CSF flow study which indicated slightly diminished flow on one side and significant diminished flow on the other side, and I received an email from the NS stating there was no blockage and to come back in a couple of years if symptoms persist.
March 2013 i had an eye exam and learned that my peripheral vision was non-existant.
The NL sent me to see another NS who said all my previous diagnosis were wrong, there was no Chiari, no CSF blockage, and that I could possibly have a pseudo-tumor cerebri, and ordered a lumbar puncture. That lumbar puncture gave me about 3 weeks of being pain-free. However the NS said there was no pressure, and that I just needed to have my eyes examined again.
I called the NL and told her my headaches, neck pain vision, and memory has not gotten better, but worse, and she told me to call the pain specialist for another nerve block. How is this supposed to help my memory issues and vision.
Pain specialists keeps sending me for lab work, and swears that I have Lyme's Disease, even though all my labs come back normal, and i've explained that I was perfectly healthy before the car accident.
My health insurance is being ridiculous and fighting me on going out of network to a true Chiari specialist. I have an appointment June 18th at the Cleveland Clinich, which I have to pay for myself ($745) and then MAYBE depending on results, insurance may allow me to receive treatment.
But for now, i have an appointment with my PCP this week to discuss all this non-sense and the medication for the Lyme's that I do not have.
And I should mention that besides my headaches, neck pain, vision, memory, there are numerous other symptoms such as constant/frequent urination, sometimes I can't even control my bladder. Dizziness, insomnia, personality changes, muscle weakness (cant even open a bottled pop), nausea, and the list goes on.
I'm frustrated, and if a true Chiari specialist tells me that surgery is not needed, then I will except that. But right now I feel i'm dealing with a bunch of incompetent people, and none of them can agree on anything.
WHY is it, that after the lumbar puncture, I was pain free for about 3 weeks, but he states the pressure was fine?
Ok, i'm done venting now. Thanks for letting me do so.