I have been on vicoden and klonpin for 4 months since my car accident and onset of chiari sypmtoms and diomox occasionally (due to kidney issues) for pressure pain. It has worked ok....nerve pain is very hard to control!! I hope you can get to a specialist soon....good luck.....prayers for you!! The pain can be horrific especially if you over do it, but sometimes you just don't have a choice, houses need cleaned and chores need done, its hard....hope it gets better for you!!
sorry about your pain. i was on neurontin for about two months. did nothing for me. tried ibuprofin, doesnt touch the pain. tylenol with codeine not much of a help. it wasnt until i got on narco did i get some relieve. it is a narcotic. bothers my stomach though. i take it in the evenings and at night and just try to deal with my pain during the day. i understand your pain, i have severe head aches 24 hours a day, 7 days a week. i am 3 months post op and just hope things start to get better soon. narco is the name when they double vicodin in the prescription.
Hi and welcome to the Chiari forum.
Cerebral Ptosis also known as brain slump can be very painful and is a result of too much bone being chipped away during the PFD surgery for chiari.
I have never heard of a cement patch....but, u do need a chiari specialist to help u . There is a surgery where they do use a titanium plate to hold the cerebellum up in place.
2001 is a long time to go with this condition, and it is possible that u may have other issues as a result. ICP is one possibility.......may I ask what ur original NS said in regards to ur ptosis?
"selma"
I had a decompression in 2001, I am now considering having a cement patch put in to help me with my neck pain that I think is caused by celebella slumping. I am in unimaginable pain and not being able to control it. I have tried acupuncture, chiorpatric help, diets, herbs, and tons of pain medicines. Does anyone have any advice for me? I turn 40 this year and I am so tired of hurting so badly. hugh40
I had neurtotin..generic Gabapentin....did nothing but mess up my IBS....so stopped them....did u try meditation....or accupuinture?
I also heard that the Feildenkrais method would be good ..a NL at TCI suggested it.
Wondering if it is possible that u have a CSF leak along with ur slump?
"selma:"
I haven't gone the pain killer route yet (because the NL & my PCP don't believe my symptoms including severe headaches, neck & back pain are Chiari related) for anything but my nerve pain. I was on Lyrica 3 yrs ago for 6 months until I couldn't afford it any longer & neurotin was prescribed instead. I used neurotin for about 8 months with the results not being as good as the Lyrica. Now that the FDA has finally released Lyrica as the fibromyalgia drug, my prescription company will pay for it & I've returned to using it. However, the only pain it has reduced for me is the nerve pain (burning, pins & needles, etc. type nerve pain). It's reduced it by about 80% (the neurotin about 50% and at higher doses), but the headaches, neck & back pain are still all here & in full force.
I'm sure there are other members here who can give you advice or at least their experiences with the meds they have used for pain. I wish you the best of luck in finding something that works for you, & keep us posted as I'm sure some day one of us (especially me) will have the same question. - Jean