[Tink-r-bell]

Wow....

Things have been so totally overwhelming lately.....Not only is my goofy arm bad, but my shoulder & neck are misbehaving too.

I had another stellate ganglion block last week and went in so hopeful that it was going to help & once the numbness wore off...nothing...nada...zip...zilch.

I just cried and cried. So, we're trying one more to see if it has more effect, but my doc has again, brought up the possibility of a spinal cord stimulator & I'm so deathly afraid of it

I'm not on much, as far as meds go, (neurontin & I eat tramadol like it's candy) but they're not really really working anymore and I don't know what to do

(Sorry, just needed to let things off my chest cause I really don't talk about it much)

[GalenaFaolan]

*Hugs* I know things can be very overwhelming when it comes to RSD. How long have you had it? Myself, it's been just over 5 years now and started with a fractured left kneecap which was dx as a bruised knee by the er. *sigh* Didn't find out about the fracture until 8 months later when I had my 1st bone scan done. In 11 months it spread very rapidly taking all of my left leg and foot and hip. Then my whole right leg,foot,hip before jumping into my arms/hands and to the tops of my shoulders. Thankfully I have remained stable for the past 4 years though with no further spread. I pray daily that it stays this way for a long time to come!! The only "issue" that I've experienced off and on in the past 2 years is my bladder. Since it comes and goes I don't worry about it.

I feel lucky to not be on many meds myself and what I do take does the job well enough for me. I take generic vicodin, baclofen and lyrica. I had a lot of problems with my legs and arms jerking uncontrollably and muscle spasms. The baclofen, a muscle relaxer, has pretty much cut all that nonsense to nothing! It's my wonder drug, along with the lyrica which has been the only med, antidepressant and seizure meds wise, that I've been able to tolerate. I only had 1 nerve block, lumbar, which for me was absolutely disasterous!!! Holy cow, it threw me into a flare for 2 months. It started just minutes after I had the block done. I was very miserable of course, but never had another for obvious reason. LOL I'm very sorry that the blocks have stopped working for you though. I can only imagine how disappointing it is.

As far as the SCS, well that is a very individual decision. I vowed early on I would never get it myself, due to how horribly it's messed people up, spread, pain, etc. I decided, personally, it wasn't worth the risk. There are a few who've had success. The only thing I can say beyond that is don't let a doctor, any doctor, push you into doing something you don't want to. It's your life and your body, not theirs.

Feel free to vent away, it's what we're here for as well as answer questions.

Hugs,

Karen

[bassman]

I agree with Karen to not let any doctor push you into something that is mainly elective. (Obviously, none of us would turn down emergency heart by-pass. ) Take plenty of time to research and list all of the pros annd cons. I often think I might have been better without the SCS, although I did get a lot of instant relief when it was first installed. But, I can never get an MRI. Going through airport security is a royal pain - you can use the arch and TSA screeners don't know what it is. And so on.

The question of how long you have been fighting comes into play here, too. I think the SCS should be almost a "last resort" when everything else has been tried and failed.

I am going through a similar decision right now. My rheumatologist is pushing BRM treatments for my Rheumatoid Arthritis, and they have so many serious potential side effects, I am worried. But, I will not let her just order it up before I am ready.

Good luck.

Mike