Occipital Neuralgia and other Cranial Neuralgias For discussion of Occipital Neuralgia, Glossopharyngeal Neuralgia, Nervus Intermedius (or Geniculate Neuralgia), and Vegal and Superior Laryngeal Neuralgia. (Trigeminal Neuralgia has its forum below.)


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Old 07-26-2011, 09:39 PM #1
humasima humasima is offline
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Join Date: Jul 2011
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10 yr Member
humasima humasima is offline
New Member
 
Join Date: Jul 2011
Posts: 1
10 yr Member
Default ON misdiagnosis

I was told for almost 4 years I had occipital neuralgia. I had a brain - c spine mri that read no abnormalities. I went to see a different neurosurgeon who was smart enough not to go by the report on the mri and make his own diagnosis. Within a minute he saw that i have arnold chiari malformation. This is causing ON type pain.
I'm not very trusting of doctors. Especially now.
I did my own research and took control. I told the pain management people who had me on 40mg oxycontin twice a day and Nucynta (garbage) 75mg 5 times a day to take a hike. I used suboxone to get clean....I don't recommend it. It took 5 weeks to get totally clean.
I was on pain meds for almost 7 years. They had to keep raising the dose to keep up with the pain. So a "reset" was something i've wanted to do for a while.
By chance....the suboxone doctor gave me acupuncture treatments and i got tremendous relief. I never tired it before. I didn't believe in it and my insurance wouldn't pay for it.
I'm not totally pain free, but it's 70% better. As much as i'd like to, I can't be completely without pain meds. But now i only take 5mg percocet a couple times a week as needed. It works great and i'm no longer a slave to narcotics. I also take Excedrin and Frova as needed. If it's real bad.....heat on the back of my head always works.
At least now I can go to people who are familiar with what i have and know how to treat it. Hopefully i can get a decompression surgery and be able to live a better life.

Please get more then one opinion and mention arnold chiari malformation.
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EE03 (09-01-2011)

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