chairi malformation

[pollyblaine]

i have a dnet tumor and chairi malformation i am in a lot of pain what medication would help

[pollyblaine]

thanks so much for your help its nice hearing from other people who have some of the same things as you really feel that you are on your own

[sleepypea]

I take Panlorr SS for head and neck pain and Diamox 500 mg 2 X a day for csf pressure. It is the only combination of meds I have tried so far that have given me any relief. I have Chiari 1 , but do not have a tumor (as far as I know) I hope you are able to find something that helps!!

[selmaS]

  Hi, Many of us were on gabapentin at some time or another...it is the genetic for Neurontin....it did me no good, in fact it messed with my IBS issues, so I had to discontinue use.
Antidepressants r used a lot for the type of pain we have  ....and is not always used just for  those with depression.

  I wonder if u have a syrinx..or tethered cord since u have hip and leg pain too!!
The other issue u should be checked for is Ehlers-danlos..as the loose joints can affect u and cause pain in the hips etc.....

   "selma"
  

[pollyblaine]

i have headaches all the time dizziness and numbness most of the pain i get is around my hips and leg area my doc had me on gadmepetentan now i an on antidepressants

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask beside pain...what symptoms do u have?...what type of pain?

Do u have seizures often?....it is something that is recent?

  Many that have chiari and not the dnet tumor do not have much in the way of meds that really help with the pain.....some may have short lived success, but others cause other side effects.

  Not knowing where and what kind of pain u r having makes it diff to know just what u r dealing with.

  I see u r from Ireland, rod44 is from Cork, co and may be able to offer insight to the medical help available over there.

   "selma"