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crps sufferer - newby to site looking for relief!

mo mommo mo Posts: 3
edited 06/11/2012 - 8:52 AM in Pain Management
hello! i was diagnosed with crps almost a year ago. they have tried conservative care-lots of meds and physical therapy. the meds are really doing a number on me and my new doctor is hopefully going to find me a comfortable level where i'm not falling over or getting sick!

the newest treatment has been stellate ganglion nerve blocks. i've had 3 but the doctor says i would need about 3 to 7 more and then also on the left side since it has affected both hands and arms. now he's suggesting a neurostimulator implant or something. he said the insurance and previous doctors waited too long to treat and now it's in advanced stages. every movement is painful and sleeping at night is rare. he gave me pain killers and something to knock me out but it just makes me really tired the next day. i'm so scared of this implant thing and i hear you cant ever havve the whole thing removed. sorry aboout the tremors. its acting up and its affecting my hands. i'll haave to end this with...scared and wonddering if i should keep going with the blbocks or drop it gfor the spinal cord stmiulator? anyone have any thouughts/? scared :(


  • hi,

    i had the spinal stimulator done a year and a half ago, i suffer RSD or CRPS in my right foot and right leg., i went about 9 months of many injections and fentanyl pain patches to help with my CRPS - which it did not., i did the trial for the spinal stim., and the trial for me was pretty rough., the day we did the stim they didnt hit the right places, so i had to go back into the office the next day and he adjusted the wires with no local or anything that day in the office, clean room sterile, but nothing for me for the pain, anyway, my back was spent from the two days of adjusting the wires, and i was just in a ton of pain and couldnt wait for the trial to be over., i told them i thought it offered about 30-40 percent help on the pain.... for my doc that was enough for him to do the surgery, since they were having no luck and the pain in my leg was getting worse., the surgery itself wasnt as bad as the recovery from the trial....was a couple weeks of slow go, but was okay.,... i find the stim helps with some of the pain, it doesnt help when its really really cold or damp outside, which living in ny is a lot... but i would say its those nasty nasty damp/cold days that are the worst for me..

    the stim gives me a different feeling than the rsd pain., is my RSD pain gone... no, is it more tolerable than it was before the trial.... yes, do i still have bad days.... yes,.... would i do it again knowing all i know..... yes!!!!

    with all that said, i have my stim on 24hrs a day, i guess every 10-12 years they have to do a minimally invasive procedure to change the battery in the implant but other than that the only thing i have to do is charge the stim... and thats really easy!!!! RSD is horrible, i feel bad for all of us that have it, i got mine from a failed back surgery., so i deal with the rsd and still all the problems from the failed surgery, i am trying to put off the second surgery for my back as long as possible.......

    its a personal decision, but i had no more choices, i had tried everything..... so you have nothing to lose to do the trial..... if it doesnt help you then they dont do the surgery, if it does... than you can.... really the trial is a freebie to see if it helps... you have nothing to lose but a week of your time...

    I hope you find relief !!!!! if i can help with anything else feel free to chat here!!!!

  • wow...thank you! i'm sorry you've been through so much. my surgery that set the whole thing off was supposed to be so simple-two weeks out of work. open carpal tunnel turned into a year ordeal and still going. today i go into the pain management dr's office to ask questions, see if the insurance company approved anything, and let him know if i want to do the stim. and i dont feel comfortable enough to ask him...does it change your sex life? you dont have to answer, i only ask because it sounds like i'll have to be really careful or the leads will move out of place? i'm not the most coordinated person by any means. could it get out of place really badly, like paralyzing? yes, i sound paranoid. i've heard doctors over and over say "trust me!"

    thanks so much, at least i know someone else knows what i mean! and i also hurt badly on cold damp days. nights are miserable but hopefully there is a light at the end of the tunnel!
  • I am so sorry to hear you have this extremely painful condetion. It is very difficult to treat.

    The SCS helps some with the pain but I have heard from others with this condetion that a pain pump works much better.

    If your Doctor thinks you may need more surgery the SCS may not be the choice for you. You can't have a MRI with an SCS implant where as you can with a pain

    Most CRSP patients may start out with an SCS but end up with a pain pump.

    I would ask my Doctor about both devices.

    I have had my pain pump almost a year with great results and no problems. I have neuropathy in both feet and legs.

    Best of luck

    Patsy W
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