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View Full Version : baclofen pump for pain... doctor denied me


Larsen
08-16-2008, 01:44 PM
so, I've been fighting off the neuropathic pain for almost 9 years... it will be nine years in September, the beginning of the injury.

My doctor down at MaGee tried almost everything he could think of when I was there as a patient last year from August to November as an inpatient with a bed sore problem. After I left he even tried a couple more things with me, and he believes that any pill form of medication won't work. So, he sent me to a neurologist to talk to me about a spinal cord stimulator. I went there, the neurologist said that spinal cord stimulators do not have the success in treating the type of pain that I have, so he had suggested I go for a baclofen pump, that way you can run pain medicine through it, and they've had more success treating neuropathic pain that way..

So, I tell my doctor that and he said he only does baclofen for the pump, so I should go see a doctor at Moss rehab who does other medicines with the pump. I go to see him, and he tells me that there are benefits for it, but first they would set up a trial, but before the trial I get a psychological evaluation.

This is what really gets me mad. I go for the psychological evaluation, and a week later the psychologist told me that I am very depressed (which I already know I am), and that I have a lot of anxiety (which I already know.). To me these findings were not new to me, the spinal cord injury depresses me, but living with this pain severely depresses me.

So, I go back to see the doctor at Moss rehab, and he tells me that he is not going to work with me because I am too depressed. I tried telling him that the pain depresses me, but he said that he will not work with me unless I seek psychological help, and if that does get better maybe we could try things 6-12 months later.

For me... that is too long. What should I do? I already called my doctor at Magee and set up an appointment for the first week of September to see if he can find me another doctor who can do the procedure for me.

I just wanted to know if anybody has had this happen to you, and what did you do? I thought I was finally getting close to getting this pain under control, and now I'm back to square one.

Any suggestions? Also, I am mad at the doctor. He said I need to get some help, but that's why I was at his office. For help with my pain.

I'm trying to get over my anger and frustration at, but should I be mad at?

To anyone who reads this and gives me some info... thanks

jhorn4012
08-16-2008, 02:19 PM
Larsen,
First read what Dr. Young said about dosage limits on baclopen. It's dated in 2004?. Have you tried any physical therapy or a standing device? Your profiles says your a c5/c6. My daughter is 17 mos. injured as c5/c6 incomplete and her PT and physiatrist(sp?) said that she needs to do weight bearing in a standing frame 1 to 2 hrs. a day.

alhavel
08-16-2008, 02:49 PM
I went to a pain managment doctor, who gave it to me for spasticity, tightness in the legs and later on moved some pain med in to help me out. He couldn't be nicer. I've been turning it down, now I'm as low as I think I can go for results and still have some strength. He's happy, and so am I. Even though I would love to be able to one day get rid of this thing. But for now it stays, and I am having good luck with it. It's kind of like a double edged sword, and I've reached a good point with it.

rybread
08-16-2008, 10:39 PM
for me, pain meds in pump didn't work very long before my body got used to them and i had to keep getting it turned up and it kept getting worse and i was groggy the whole time. stopped putting dilaudid in pump couple years ago and quit smoking which made the biggest difference right there and the leftover pain, i've just learned to deal with, unless i just had bilateral flaps done. in other words, i would't recommend pump fo stricly pain management

Larsen
08-18-2008, 07:51 PM
Hey, thanks for the replies.

As far as spasticity goes... I am not having a problem with my spasms. I have them under control with the amount of baclofen I take and Tegretol. The thing I need help with is the pain.

I've tried just about every medicine there was and is, and nothing seems to work.

jhorn: I do have a standing frame that I get in about four days a week for an hour, and have had that since I first got home from rehab, and I do a lot of physical therapy at home. I get range of motion every morning, and use an uppertone everyday as well.

I just don't know why my legs burn so bad. It's so frustrating. Every once in a while I do have a day where the pain is toned down just a little bit, and when that happens it's almost like... okay, maybe this spinal cord injury isn't as bad as I'm making it out to be. The next day, or later on that day the pain starts up again.

The reason why the neurologist selected the baclofen pump was because they could use other medicine other than baclofen for the pump to help fight the pain. I'm not sure if the pump would either work or not, but I at least wanted to try it, but it looks like I'm going to have to find another doctor now.

jhorn4012
08-19-2008, 12:00 AM
Larsen,
Has your doctor ever prescribed gabapentin? My daughter said this takes the burning pain away in hands and feet. It comes and goes with weather fronts and temperature of day.
Hey, thanks for the replies.

As far as spasticity goes... I am not having a problem with my spasms. I have them under control with the amount of baclofen I take and Tegretol. The thing I need help with is the pain.

I've tried just about every medicine there was and is, and nothing seems to work.

jhorn: I do have a standing frame that I get in about four days a week for an hour, and have had that since I first got home from rehab, and I do a lot of physical therapy at home. I get range of motion every morning, and use an uppertone everyday as well.

I just don't know why my legs burn so bad. It's so frustrating. Every once in a while I do have a day where the pain is toned down just a little bit, and when that happens it's almost like... okay, maybe this spinal cord injury isn't as bad as I'm making it out to be. The next day, or later on that day the pain starts up again.

The reason why the neurologist selected the baclofen pump was because they could use other medicine other than baclofen for the pump to help fight the pain. I'm not sure if the pump would either work or not, but I at least wanted to try it, but it looks like I'm going to have to find another doctor now.

Larsen
08-21-2008, 02:07 PM
No, I haven't. But I go to see him early in September and I'll ask him about it.
Thank you