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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Spinal Cord Stimulator vs. Intrathecal Infusion Pump

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    Old 04-26-2006, 12:55 PM   #16
    sheri42
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Hello,
    I was wondering what your initial symptoms were and when they started after surgery. I am still undiagnosed and trying to figure this out. Just a little background maybe?? I had spine surgery 9 weeks ago and about 3 weeks post op developed burning in my foot and severe sensitivity. My foot feels hot all the time but the other one is the same and occasionally only in the areas of sensitivity(2 toes accross top of foot and instep) it looks pinkish to red. I have never noticed swelling. Since I woke up from surgery I have had cramping and tightness in my calf also. My calf aches most the time and the burning is worse at night.

    Sometimes burning in lower extremeties is normal post op issues from spine surgery from nerves waking up or swelling. That is why it is confusing.
    Thanks
    Sheri

     
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    Old 04-27-2006, 08:24 PM   #17
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    When they say you can't drive with it, they mean that you have to turn it off (using an external remote device). I have not heard that you have to do that when you swim, but I assume that is what they mean. From what I have researched and been told, the SCS would not be the first choice for me. 1st --> I would have to spend 3 months with limited activity while the leads implanted (and I have a 14yr old, a 9yr old, and a 7yr old and a huge (now that I have RSD it seems HUGE) 2 story house to keep up with). So, I don't think that the leads would implant right because my lifestyle simply wouldn't allow me to slow down that much. 2nd--> My RSD has started spreading, meaning there is a good possibility that the original coverage points of the leads would not be what I need in 3 months. 3rd --> I already have an external nerve stimulator device and it does nothing for me anymore. It worked for awhile and then it got to the point when the I couldn't feel the tingling sensation anymore and it quit helping the pain.

    In general, there are people that say they love the SCS and people who don't like it. The one thing that I would make sure of is that you research it like you are doing now. This is a big decision and if there is a chance it will help you...go for it!! But, if you have a lot of doubts, remember that there are other things to try

     
    Old 04-27-2006, 08:33 PM   #18
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Sheri,
    My symptoms started after a major ankle fracture followed by two surgeries (the second being a six inch incision with the ortho doc breaking my tibia in two places just to get inside my ankle to fix it.
    I had my second surgery on 2/2/2005 and first noticed my symptoms about 6 weeks post-op. The pain was get worse and not better (and I was still not weight-bearing at this time) and was a burning/stabbing pain. I also noticed my foot turning purple and I had swelling (but this was normal at this post-op time). Now, 15 months later, I have severe sensitivity from the middle of my foot to my knee (it hurts to have something blowing or lightly resting on my leg). I can't wear shoe with backs or heels (I live in flip-flops and slide-in shoes). When the doctor takes the temp of my legs, my affected leg (the right) is 2 degrees cooler than the left. If I sit for too long or am active for too long, I have a hard time walking. My baseline pain level is 3-4 with peaks at 6-7.
    IF YOU HAVE ANY THOUGHT THAT YOU HAVE RSD, PLEASE SEE YOUR DOCTOR. You may simply be having post-spinal surgery issues, but the chance of RSD worsening without treatment is not something you want to risk. You should make an appointment with your surgeon to follow-up and see what is going on.

     
    Old 05-02-2006, 05:16 PM   #19
    palarin
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    To follow-up on questions regarding driving and getting into a pool. txmomof3 is correct about turning off your SCS box prior to driving. I too have the SCS implant and after the normal 12 week recovery, I was able to get into my pool and lay on a raft. Prior to my injury, we used to play volleyball in the pool all of the time. However, now that is no longer possible.

    Marie

    My background on RSD:
    Aug 2000 - Left foot surgery
    Sept 2000 - Right foot surgery
    Nov 2000 - Started experiencing a number of RSD symptoms
    Nov 2000 - Jan 2001, I saw a total of 6 doctors including specialist at Cleveland Clinic
    Jan 2001 - Diagnosed with RSD
    Feb 2001 - Nov 2001 went through a number of spinal blocks & physical therapy
    March 2002 - Spinal Cord Stimulator implant
    March 2004 - Spinal Cord Stimulator replaced due to bad lead & battery problems
    Summer of 2004 - RSD began to spread, hands were numb & arms were burning. Legs would give out and experienced continence
    Sept 2004 - Spinal Cord Stimulator removed so that MRI could be done, Dr. suspicious about possible Syrinx in spinal cord. Syrinx was found in the neck area. Dr's agreed that I was permanently disabled and would not be able to return to work.
    Oct 2004 - Went to 3 different Neurologist who all agreed that syrinx was not the cause of my problems.
    Dec 2004 - Saw a hand specialist regarding the pain/numbness that I had only to be told that I did not have RSD (who did this guy think he was after everything I have been through, telling me such a thing). He recommended that I see a Rheumatoidologist .
    Jan 2005 - Rheumatoidologist diagnosed me with systemic RSD in which all extremities are affected. I also started having RSD attacks on my internal organs. (These are so very, very painful) The only thing I can do is take oral morphine and rock through the pain episode until it is gone. Normally lasts for 8hrs or so but one time I had an episode that lasted for 3 days.
    I also had my Spinal Cord Stimulator box re-implanted on 1/12/05.
    Feb 05 - July 05 - continued trying various medications to help calm down my pain (none of them worked, except for large doses of morphine)
    I trialed tested the morphine (Intrathecal Infusion) pump and it seemed to help me.
    Oct 6, 2005 - I had the Intrathecal Infusion Pump implanted and began therapy to adjust the amount of medication that I would need.
    Nov 2005 - Granted Social Security Disability due to permanently disable.

    Not only do I suffer from systemic RSD but also severe depression as a result from this horrible disease.

    Note: I use an electric scooter in the house to get around and I have a wheelchair in our car for when we go out.

    God Bless all of my brothers & sisters who suffer each day from RSD.

    Last edited by palarin; 05-02-2006 at 05:16 PM.

     
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