United Brachial Plexus Network, Inc.

Hey there peeeeeeepuuuuuulllll!!! I went to my pain Dr. yesterday to tell him that I wanted a referral for an amp. He was not too happy that I wanted to do it. He said to him it was giving up. He just wants to re-do this damn SCS, which would be for the 3rd time, and I said well what would it do for me?? He says it would stimulate my muscles and get the blood flowing thru it good again. Then I said well will it give me any recovery? He said no. I said HELLLLL NO! LoL So he reluctantly gave me my referral. I told him, I'm just tired of this 10lb dead arm swinging around off my shoulder. But theeeen, he gives me a script for elavil n methadone, and I have slept allllll day. I woke up @ 7pm and my son had one helluva time convincing me it was not 7am. I thought he had been out all nite running around, and he was @ MickeyD's working!!! LMAO This stuff is pretty cool huh?? LOL But really, does your body adjust to the feeling of 'I'm so stoned I can't get outta bed'??? I sure hope not...er I mean so....

Also, my Dr has alwaaaays said that if I had more agressive treatment when I was hurt, I may have gotten some use back in my arm. I was hurt pretty bad in my wreck and my arm was really the least of threir worries. But even when I was sent to rehab, from the hospital, they never really worked or treated my arm. I can't help but feel like someone, somewhere dropped the ball when it comes to treating this injury. Am I wrong? Anyone that has any opinion, I would greatly appreciate it.

Anyways, I't time to take another dose and go back to bed....LOL

Amy

Hi Amy
If the SCS has failed so far, what reasons did the doc give for trying it again? I'm just curious....and is this the same doc that is telling you your recovery would have been much better if you'd had more treatment early on? I'm wondering how exactly he thought that would help you?
He may be right, but as I said, that doesn't help you or your pain one bit. He may also be wrong, but as nobody can turn back the clock and do things differently to find out if he's right or wrong, in my opinion he should be maybe keep his unhelpful comments to himself and get onto working on what could help you right now. Telling you your own decisions about treatment are giving up doesn't seem very supportive, either, does he have any good reasons why you shouldn't amputate?

Can't comment on the drugs he gave you, just grab that sleep with both hands (or not....hahaa)and make the most of it while you consider your options. Maybe a second opinion might help.
For the record, I am currently on the waiting list for amputation after 25 years. I wish I had done it sooner, in fact if I knew at the beginning what I know now I'd have gone for the chop after a couple of years.
Take care Amy, you type well for a stoned person :0)
Jen NZ

Hi Amy...if the Dr who said that you might have got back some movement with earlier agressive treatment is the same Dr who told you that you're 'giving up' by wanting an amp, tell him to f*&$@ off. He obviously doesn't have your best interests at heart and should get back to med school pronto and brush up on the section about dr/patient relationships.

YOU are the one who is in charge of your injury, and if YOU want to amputate after considering all the alternatives, then above all, he should respect that decision. I don't suppose for one moment that you came to that decision lightly.

Drs like him make me as mad as h*ll...he is as bad as a Dr who would take it the other way. For instance, we have a man in our group here who was told 'it's useless, get it amputated' by a Dr who didn't examine him properly and who was only 2 months injured. Basically, the Dr in this case couldn't be bothered, as yours doen't seem to be bothered with listening to you.

Don't know about the drugs he gave you...be careful mate as these can be very addictive and cause many probs with heavy use. I'm sorry if thats dropping a big stone in the pond, but I wouldn't feel happy not warning you of this. Take the sleep and enjoy! BUT don't let the drugs take over your real life too much...been there and done that and it can get verrrry messy...good luck to you..let us know what happens next...

Liz B :0)

ps Sorry about the rant at the start of this, but that Dr sounds like he should retire. Or take up vetinary surgery.. :0);0)

HiYa Jennyb!

With the SCS, he thinks that the DR who initially did it and had to re-do it didn't do it right. He wants to put in new leads to see if it would help the pain I feel in my 'supposed arm' that's dead as a doornail. It really never worked to control pain, just kind of an aggravating tingling sensation. And yeah, he's the same one that says that if I had come to him long before I had, maybe I could have gotten better treatment for it with him. You know what they say, hindsight is 20/20, so who knows. He really has been a great Dr though, in his defense, he's the only Dr I have treated with that knows this injury. I live in Indiana, and he's the best in my area. He really just hates to see me give up on my arm. Why, I don't know.

The amp decision sure is a hard one to make. But like I said, I think it's about time I start 'living' again. From everyone on here that has given me advice about it, they don't regret doing it. My arm died long ago, and I really don't see hanging onto a part of my body that's nothing but in the way. And I am able to shrug my shouder and I think w/o the dead weight, I would be able to do some things with my arm.

But is this injury a 'time is of the essence deal' where it needs to be taken care of ASAP in order to get something back? Cuz if it is, I was screwed from the start. Has anyone's DR told them anything about this???

And yeah, I guess the new drugs just take some getting used to. But I am definately flying high until then....

Thanks 4 writing!!

Amy

Hey there lizzyb!

I really appreciate you reading n responding to my post. If you read what I wrote to jennyb, it might help answer some of the questions and comments you brought up.

You're right, I am in charge of this, and that's precisely why I insisted on a consult with the surgeon. I hafta call 2morrow n set up an appt. I want to know how HE feels about this. So I will keep you posted on how that goes.

As far as the new drugs... I can really tell a biiig difference when I take the elavil. It kicks my ass, but the next day after I have taken it, I hardly have no pain, yeah, I said NO pain. But at the same time I feel like a zombie!! LOL I think that after I get used to them again (these are 50mg, I used to be on 150mg long ago) I will do much better. But if it helps with the pain, I'm willing to keep taking them 'till I get used to 'em.

Thanks againg 4 writing me!!

Amy

Those maroons didn't even diagnose me for several months---thet thought I had a broken wrist!!!!!!!!By the time they realized what they had, any chance of reconstruction was long gone--same for restoring any muscle function retraining the limb in any way---it just shriveled up and died. Then one jerk insinuated it was my fault for not using it!!!!!!
I feel for you. I had mine amped in 95--two years post accident. Best thing I ever did. Never met ANYBODY who chose amp and regretted it--course It's a big world. By the way, I'm on 50 mgs methadobe daily.
Ronin

don't worry you will get used to the drugs, for me it took a couple of weeks. It was really weird at first because i was soo messed up, but now they fine. I am on oxycontin, neurontin, elavil, daypro for the pain,i would say tthe drugs really do help

bumper