[lexiemae1]

This is what a nurse told me the other day on the phone and that RSD makes people crazy from the pain?? (I thought really, DUH< u think) Dumb quack of a nurse. The doctors never explained this to me that the more surgeries u have the more likely u will end up with RSd!! Is this true?? or is this my nurse just running off at the mouth.. Now the pain management doc ( said after only trying me on 10 mg of hydro and tizandidine now) for a year (after only trying Cymbalta and I couldn't take because of high bp and Gabapentin made me feel funny and under the influence at work)the only option she can offer me is the scs.. I know after researching for a year or so on RSD there are other options she could offer like patches, other med combos etc???

[Cake]

Hi Sunshine Girl

As far as I know, there isn't a certain amount of surgeries that make you more likely to get RSD, just one surgery is enough. Or for me, one blood test. I guess that because surgery is one of the most common ways for RSD to start, having 9 surgeries does increase that risk a little, but it's just pot luck in a way, as millions of people have surgery every day and only a small amount of those people will get RSD.

As far as the scs goes, that is one of many lines of treatment. Some drs believe in doing that right at the start, others do it as a last resort, once everything else has failed. I personally think it should be a last resort- once you've tried blocks, medications, infusions etc. The scs is very invasive and only about 50% of people have long lasting success with it- many need further surgeries in the first year or so as leads move and have a lot of complications.

One RSDer on here had an scs fairly early in her rsd and regrets it, as it caused her rsd to spread and didn't help her pain anyway. Others have had great relief from it.

But if you're not ok with trying it right now, then don't let your dr bully you into doing it. If needed, find another dr who will listen to you and be open to trying other things that you may want to try before going down the scs road.

x Kate

[lexiemae1]

Originally Posted by Cake

Hi Sunshine Girl

As far as I know, there isn't a certain amount of surgeries that make you more likely to get RSD, just one surgery is enough. Or for me, one blood test. I guess that because surgery is one of the most common ways for RSD to start, having 9 surgeries does increase that risk a little, but it's just pot luck in a way, as millions of people have surgery every day and only a small amount of those people will get RSD.

As far as the scs goes, that is one of many lines of treatment. Some drs believe in doing that right at the start, others do it as a last resort, once everything else has failed. I personally think it should be a last resort- once you've tried blocks, medications, infusions etc. The scs is very invasive and only about 50% of people have long lasting success with it- many need further surgeries in the first year or so as leads move and have a lot of complications.

One RSDer on here had an scs fairly early in her rsd and regrets it, as it caused her rsd to spread and didn't help her pain anyway. Others have had great relief from it.

But if you're not ok with trying it right now, then don't let your dr bully you into doing it. If needed, find another dr who will listen to you and be open to trying other things that you may want to try before going down the scs road.

x Kate

Not sure what u mean by infusion.. Can u explain? Just wondering what all options I do have.. The only thing my pm doc is interested in or willing to discuss is the scs. I don't agree with this??

[hope4thebest]

Hi Sunshine Girl,
I have RSD in my foot , lower limb, burn in other foot and limb and on/in my face.

My P.M. doc wanted my to do the SCS and brought it up each time, even gave me a DVD and booklet...after learning about possible risks with RSD, I told her I didn';t want to take that route. The doc made me feel somewhat guilty for not agreeing with her.
I know it has given many success but i don;t want to take the risk plus, I work full time and the recovery is very long ..with no bending, etc, etc!
I requested and was granted an appointment at a reputable university hospital pain center to find out about more options...The appt. is not until late Sept. but I feel good about listening to myself and not being 'convinced' to try the SCS unless I was the one who chose to do so...
I take Neurontin and tried the Cymbalta and the Cymbalta through me completely off...so I discontinued it...I'm trying to find out if St. John's Wort, a natural supplement which optimizes seratonin can be taken with neurontin..
Take care, Sunshine!
Hope4thebest