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-   Occipital Neuralgia and other Cranial Neuralgias (https://www.neurotalk.org/occipital-neuralgia-and-other-cranial-neuralgias/)
-   -   ON misdiagnosis (https://www.neurotalk.org/occipital-neuralgia-and-other-cranial-neuralgias/154266-misdiagnosis.html)

humasima 07-26-2011 09:39 PM

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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