Looking for Help!

[angel423]

chronic pain, from failed back surgrey. I am told there is permanent nerve damage.
meds:160mg oxicontin 3x a day, 5mg oxicodone 2-4 every 4 hrs, 25mg pamalor @ night. I have tried the spinel cord stimulator(did not work @ all)The trial morphine pump, (not enough releif to have the hockey puck size pump implanted in my stomach. I have tried many nerve drugs, antiflamatories that have gave no releif. The pain regulates from the left side, 2nd rib area down to the groin across the inner and upper thigh across the low back, into both hips and the top of the back right thigh. The pain has disabled me to the point where I am only out of bed about 4 hrs a day, because any type of movement is so painful. I am now told that my bone is fusing by itself, L4-S1 has fused and now my ankles are starting to fuse. Has anyone ever heard of this? I have been told it is gentic bone desease, but it does not have a name atleast the neuro docs @ John Hopkins don't know.

[metronycguy]

cjm how long since your last back surgery?
what kind of pain is it . burning, shocks ache, dull ?
i know it is horrible how high did you go on the anti seizure meds and which ones, any relief at all? i was trying pamilar 25 mg myself for the last 3 weeks, i think the 10 mg or 20 mg of elavil worked better on the neuropathic pain than the pamilar for me. i have been taking the elavil off and on for about 2 years.. it did work well in conjunction with a anti seizure such as neurontin. ultram i find works pretty well on neuro pain , with less motor function loss than percocet type meds...

[David Berg]

cjm, metro is right that you should be specific about what the pain feels like, especially when you are talking to your doctors. Tell them if it feels like a burning pain, if it is jabbing, feels "electrical", or any other unusual qualities to the pain. That might help the doctor understand what is causing the pain, especially whether or not it is neuropathic pain. Neuropathic pain is sometimes very difficult to describe with words, so be creative if you have to.

There are many options for drugs and drug combinations to treat neuropathic pain. It is a very challenging condition for both the patient and the doctor, so I wish you the best of luck.

[angel423]

My last surgery was 5/11/04, was suppose to have a tumor removed and a fusion of L5/S1 but when they opened me they found that I had a boney growth that had already fused that area. So they did a lamo of L4/L5.
The pain starts like a tooth ache where they removed the second rib, sensitive to the touch, almost to where I feel twisted inside my body. The groin and to the top of my thigh is deep down inside but still sensitive to the touch almost like the feeling of novacaine waring off but pain that on a scale of 1-10 is never below a 7 even with the pain meds. I feel that I have been taking the pain meds so long that my body is building a very high tolerance, so they need to keep increaseing the dose.
The list of drugs and different combos were:Naprosyn, Relafen, Vioxx,Zanaflex, Flexeril,Effexor,Wellbutin, Pamelor(just started 1wk ago),Neuronton, Zonegrem, Ultram, Prazocin, Baclofen. The anti inflammatory drugs really upset my stomach and I have had no releif. Effexor & Neuronton had bad side effects in whole I couldn't stand myself, In my case a very mean drug.
Thank you for your input, I will keep all in mind when I find another doctor. I am looking for an orthopedic doc to try to find out what is causing my bones to fuse and grow more bone.

[David Berg]

cjm, do you have a physiatrist involved in your care yet? If not, then I highly recommend you find one soon. In case you aren't familiar with the specialty, that's basically a doc who specializes helping people with chronic life-changing conditions. Good luck finding a decent ortho. From the sounds of it, if your condition is all that rare then maybe you should be looking for one someplace like one of the big medical schools. That sort of environment sees many more challenging conditions and you just might have better luck.

BTW, how many of those meds are you on at once? That's quite a laundry list and I hope it's all being well managed.

[angel423]

Yes, there has been a physiatrist involved but I do not think they are helping much. I guess I deal with the everyday but I am not ready to give up and except this condition as my final destiny yet.
My doctors at the present are at John Hopkins Hospital in Baltimore. My pain management is handled through Graduate Hospital in Philadelphia, use to be Jefferson but they moved. They monitor you monthly.

I am always looking for new studies, anyone familier with studies in other countries?

[metronycguy]

cjm did they remove the tumor or is it still there ? . they had to remove a piece of your rib to do a laminectomy at l4/l5?
i have 2 laminectomys spaced 5 years apart at those levels, and i remember having that type of pain ( i think)in the incision area and in my butt for at least a month afterwords if not longer, doesn't sound like the neuropathic central pain that i experienced afterward, perocet and vioxx worked well with me on that type of pain.. i didn't have luck with the neurontin and zonegran, or tricyclics for that type of pain..

[David Berg]

cjm,

In case you hadn't noticed it, CareCure has a section for research postings, including one with updates on recent literature on neuropathic pain, among others. This is another one of those areas where we have to give a big thanks to Wise Young for putting in a great effort to help everyone keep abreast of the latest news affecting those with SCI.

If you'd like to find info about studies looking for participants, I know there's a site with that info but I can't locate it right now. You can try asking Mary Simpson where to find that. She's the webmaster of http://www.centralpain.org. You can email her thru her website. She also runs an email support group for people with central pain, so you might be interested in that, too.

[Duke]

cjm,I know where your coming from when it comes to chronic pain.I was on a large dose of oxycontin and oxyIR for breakthrough pain but after a while the pain medication was making me sick so i had to deal with what to do,live with the pain or lose myself being because of this crap.I stop taking the oxycontin an the oxyIR and it feels like i got my life back.
If someone was to ask me about oxycontin, I would tell them to steer clear of that stuff if you can because you are not the same person while taking that kind of medication.
Good luck with your pain cjm..you will be in are prayers. Duke

[angel423]

They took out the second rib for a fusion done @ T12-L2, this is the surgery that has caused all of my present pain. Damage was done in entry or closure, they are not sure.
They did not remove the tumor, they said once they got in there,it was boney growth. Did not get biopsy report back yet.

The oxycontin has made my life livable again, w/out I cannot function at all. It is one of the cleaniest narcotics out there that does not effect your vital organs.

I am fortune it that I do not get side effects.

I am always looking for studies, thank you for the info.

[calico]

I'm not sure if this is the clinical trials website David was referring to but this is the one I know about:

ClinicalTrials.gov (http://www.clinicaltrials.gov/)

Calico

[David Berg]

Originally posted by calico:

I'm not sure if this is the clinical trials website David was referring to but this is the one I know about:

http://www.clinicaltrials.gov/

Calico

That'll work! Thanks calico!

[metronycguy]

is it Ankylosing Spondylitis?