chiari malformation

Good Afternoon. I am wondering, I have had part of my back skull and brain removed, and am still having spine pain and neck pain in that same area of the chiari. I have read that sometimes they can also take out some of the spine. Is that true, and should I go and make an app with my doc. It's hard to talk to him when they keep sending in his PA and she isn't listening to me. I really need to talk to him. I am on high doses of narcotics and I want OFF...I need them to do something with my spine. Is it true the spine is VERY related to the chirari and that I should get more info on this?  Thank you.
I also have Pemphigus Vulgaris. I am wondering if I got it due to the Chiari?
Thanks Jane

[Nassim Abi Chahine, MD]

why you take narcotics? And do you feel you are pain-free on them?

[jane880]

I can answer that in two ways. Yes and NO!! I am not happy being on these narcotics first of all. I have lived on them for so many years and do they make things all better, absolutely NOT...I have to still take excedrin migraine almost everyday. So there is the No. But when I have gone off them and were done with the withdraw part, I had to use my cane or not move at all. and again that's after withdraw. I still got the headaches but so so so so so much worse that I had to go into the Er for like intervenius Toradol, and Delotted. So I don't want that. I used to get called an addict till they finally figured out I really had Major problems. That's why I am seeking other options to getting better. I have done the steroid shots let alone I am on Prednisone for my Pemphigus Vulgaris and the narcotics for the pain when I get the blisters all over my body and when that happens there is NO pain meds that can help that pain..

[Nassim Abi Chahine, MD]

i see, i really assessed your problem and in my opinion the specialist who can really helps you now is a combination of two specialists: one of them should be good in pain management and the second specialist in addiction. (for example a neurologist and a psychiatrist).
first of all the psychiatrist start his treatment with Naloxon or Naltroxen and the neurologist start his gabapentin or pregabalin, both of them should take under consideration a sufficient dose of anxiolitic and antidepressant. slowly you become narcotic free and the neurologist can then figure out the final dose of his meds plus the psychiatrist define the dose of antidepressant and expose your scheduel of visits. a muscle relaxant dose can be added for 3-4 months (take care about side effects of long time use.. hyperthermia/hypothermia...).
If all this plan fail a Neurosurgeon SHOULD  measure the option of Chiari re-treatment