Chiari Malformation Community
pain relief other than narcotics
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pain relief other than narcotics

Hi, I have been on several pain killers even including oxycotin. Nothing helps. I have heard of people taking topamax and neurotin but have researched side affects and it's pretty scary.
I am 4yrs post op from decompression/ cervical fusion. Recent dx of cerebellar ptosis/ brain slump.
The pain is unreal- can't work- on couch for days. currently on nothing but otc tylenol etc.
I really need some relief here. any suggestions?
                                                                      Thank you
                                                                       journey119
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Avatar_f_tn
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
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620923_tn?1405964489
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:"
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Avatar_m_tn
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
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620923_tn?1405964489

  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"
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Avatar_f_tn
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.  
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Avatar_n_tn
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!!
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