How are you being treated?

[Deulley87]

I was dx last year and underwent my decompression in april of this year. It took 6 years of constant complaining about head pain and back pain to find out I have CM ans SM. I was sent to a pain management specialist, and guinea pigged 30+ types of meds and still have found no relief. I was wondering what types of meds anyone has been put on that found them relief. I know we are all different but maybe some one is one something or has a certain combo that I haven't tried yet. Any help is appreciated, thank you.

[selmaS]

  As long as u have an obstruction of CSF u  will continue to have pains....and symptoms,

Dr P didn't do ur orig surgery did he?.....

Not sure y some require more then one surgery, but for many that is what helps.....

And I also know what u mean about pain meds....so many do nothing and the fear of relying on them too much is always there too....

Keep sharing how u feel , u will find the light <3

[Deulley87]

I have had all other conditions ruled out. And yes I am still having post opp issues. Nothing has gotten better, and is gradually getting worse, as if I never tried to intervene with surgery.

I have had my pre and post op mri's looked at by yet another NS who is supposed to be a specialist, Dr.Prevedello. He wants to consult with me and thinks I should re-do my decompression.

I feel he is right, my tonsils have more room but there still is csf blockage and brain stem compression, on top of the fact my syrinx has not gotten any smaller.

Everyday is a battle and my pain puts me to tears. It's like they dont believe I hurt as much as I do :( I understand pain meds are addictive and blah bla blah, but there is nothing else to help. I have 2 sheets of meds I have tried in the last year or so, and nothing works. Pain meds only hide it for some time, but as soon as they wear off pain comes right back.

Just lost in this dark world :(

[selmaS]

  Hi...did they rule out ALL related conditions that could be causing u pain.

If u r asking b4 surgery....no med helped me at all.....post op I was only on meds for a time after surgery...and now only need meds when I have a flare up of my EDS symptoms.

Are u still having issues post op?