Still terrible pain 7 years after surgery

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kerry63

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Any advice would be greatly appreciated.

I fractured my L5, the pars broke off, and crushed the surrounding discs in 2001. My neurosurgeon fused with cadaver bone, cleaned it up inside, and placed roRAB, screws and a bracket to stablize it. I had a bone stimulator and the fusion took very well.

Unfortunately, there was nerve damage, and it has gotten continually worse through the years. In January I had a neurostimulator implanted, and that helped significantly, but the pain has returned, although still not full bore.

On the pain scale, at my very best with my meRAB, I can't get below a 3. My average day is a 5. The pain is severe and sharp in my lower right lurabar, and then a severe aching in my buttock, hip, and down my leg, with tingling and some nurabness.

My pain doc says there is nothing left he can do, I just have to live with it. I have done the pt, exercise every day (walking and water aerobics.) I have three kiRAB and a husband (very supportive, all of them) but it is very hard to participate in all my kiRAB activities, but I do so and just try to hide the pain from them. I am worn out from all of it, and feel like there is no hope for a somewhat "normal" life.

Does anybody have any ideas???? Any good suggestions???? I'm stumped and feel like my pain dr doesn't understand what I live with. He told me that there is no way any pain returned after the neurostimulator, it just wasn't possible. He did an xray to make sure the leaRAB were in place, but has not checked the "hardware" in my lurabar for a couple of years, and says that we would know if anything was wrong there. Basically, he says it's all in my head! I told him no, it's in my back!!!

Help!
 
First.. you need to make some changes in your PM doctor, now rather than later. Your doctor basically has written you off as credible.

The comment the doctor made that it would be impossible for your pain to return after the NS implant is an insane comment to make and totally wrong! Even if the leaRAB are in correctly, for some, after a while, it just doesnt do the job anymore. And he could be wrong about the leaRAB being properly placed and hooked in properly. I am sure some others with the NS will chime in here and give you much more hanRAB on info than I could possibly offer.

When a doctor pulls this crap with a patient, the doctor/patient team is severed and not rebuildable again.

You need to seek out the help of another PM group & doctor who is willing to check all things, offer a new opinion and ideas on how to get you more stable.

You are doing the right thing by being there as much as you can for your kiRAB and family without showing too much to them, as they couldn't possibly understand what you live with unless they had similar issues. And it's not their burden unfortunately. You trying to be as normal as you can at the moment. Hang in there with that and dont retreat. Dont give up, even though that doctor has helped foster your thoughts on that.

I dont believe in the no win scenario, I truly don't. There is always a chance of a better tomorrow. You hang in there and keep us posted. Best of all to you.
 
I feel alot like you do. I have a family and I'm in constant pain. I don't hide the pain from them very well...I don't say much about it, but I'm not able to do much and by evening I'm barely able to do anything but lie down. I had a neurostimulator implanted in March and unfortunately it made things worse. Anyway, since you did have relief from your stimulator at one time maybe you could have the rep do some reprogramming to get you some additional relief.
 
Thank you alpine! Yes, by evening it is just terrible, and of course, that's when all the kiRAB are home and extracurricular activities begin! I am so lucky to have such a supportive husband, and from reading all the posts on this website, I have learned that I have limited my meRAB so much it's ridiculous! I never wanted to take more than 3 vicodin per day, and I have come to the conclusion that that is just crazy! I have increased the meRAB, as necessary, and at least I can get some stuff done! As far as the stimulator, I am running it at it's max, feel like I am going to bounce across the room, but it helps to some degree, so there's nothing more they can do. I still get some pain near the implant area, I made the mistake of losing weight and so now it is very near the skin, very visible, and I tend to bump it, which gives me bruises! But oh well, it helps some so I will live with it. Try giving it some more time. When I first had it implanted, I couldn't run it at night, and could only turn it up to about 1.5. I now run it 24/7, and keep it at 4.5 - 5 at all times! You get used to it, I just started turning it up a couple of points every couple of days, and I did adjust to it. Good luck to you, and let me know if you have any other questions about the stim, or need any advice! Take Care!!!;)
 
My doctor team at Univ. of Michigan wrote me off after the implant. I am now seeing a team of Pain Doctors at Henry Ford. I have had my spinal cord stimulator for a little over 1 year. It works great for the nerve pain in my legs but my low back is killing me. Now the doctors want to put a pain pump in for my extreme pain in my low back. I am supposed to take 1-2 Vicodin and 40mg of Methadone 4 times a day (most days I only take half of that so I can function somewhat normal) and the doctors want to get me off the oral meRAB. Wish I could have my old life back!!! But all-in-all....the spinal cord stimulator is GREAT.

Keep your head up and keep us posted!!!

:cool:
 
Hi MadhouseMike. I saw my pain doc on Friday, trying to come to an agreement about my pain meRAB. I feel like I am talking to a brick wall! I took my husband in with me to lend some support. I have the stim, but I have had a return of some of the leg pain, mostly at night when I try to go to sleep. (he did finally admit that it is failed back syndrome, and it will never get better!) We discussed the pain mangement, he previously would only give me 4 vicodin a day, plus neurontin and soma. I told him that I wanted to have the ability to take up to 6 a day. He switched me to Norco (less tylenol) and said that if this doesn't work, that my only option is a morphine pump! I left there with a new presecription, and low and behold, he STILL gave me only 4 a day!!! This was after telling me that 6 was OK with him, but to take 2 before bedtime for the leg pain. I had already explained to him that it didn't help with the leg pain!! I asked for klonipin, I had previously taken it for restless leg syndrom, but my stim solved that problem. He told me that he WAS NOT FAMILIAR WITH THAT DRUG and would not prescribe it. TOTALLY FRUSTRATING!! I really want to find a new doc, but am in the end stages of getting my SS disability approved, and don't want to make any changes right now. I am going to go back to my MD who originally prescribed the klonipin and get it from him. I have to wonder why a doctor who can implant a stim on my nerves is not familiar with a nerve medication! Bunch of quacks out there! I am going to send him a written letter regarding my dosage of Norco, so maybe becaue it is written he will get the message. **REMOVED*** I cannot wait to get the disability thing done so that I can make a change. I wish you the best of luck, and try to not go to the pump, they say that once you are on it, you never get off! That is my biggest fear! :)
 
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