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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Spinal Cord Stimulator vs. Intrathecal Infusion Pump

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    Old 04-10-2006, 12:21 PM   #1
    txmomof3
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    Question Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    I have has CRPS in my right foot/ankle, and now leg for about one and a half years. It has gotten significantly worse over the past couple of weeks. I am looking into the possibility of a SCS or an intrathecal pump, but am unsure of which to try. I have three active children, so a big concern of mine is the time it takes the leads to permanently implant after the SCS is put in. I can't find much information on post-op limitations for the med pump. I am also curious as to what success people have had with these devices. Having an implant is a BIG step, but I want to decrease my meds and increase my quality of life.
    Thanks!!!!

     
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    Old 04-10-2006, 07:04 PM   #2
    sharon1030
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    Smile Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Hi and welcome to the board. I've had my morphine/bupivacaine pump for almost 5 years and love it. It has helped with my pain tremendously and I haven't had any problems with it at all. I didn't really have any limitations after having the pump put in (however, I don't do much because of atrophy in my legs so maybe that's why they never said anything). I love my pump and wouldn't trade it for anything. I think the bupivacaine in it helps more than the morphine because it helps with temp/color changes and pain too.

    I hope this helps you a bit and if you have any more specific questions, let me know.

    Sharon

     
    Old 04-10-2006, 07:41 PM   #3
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Thanks so much and I am so glad I found this board!! I am really interested in the pump and am glad to hear it works so well for you. When I had my lumbar sympathetic injections, the bupivicaine seemed to help more than the steroids they used. So, it sounds like a combo like yours might work really well. I just want to make sure I make an informed choice.

     
    Old 04-11-2006, 04:21 PM   #4
    sharon1030
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    Smile Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    I know what you mean. Good luck with your research and remember that I'm always here (I usually stop by once a day unless I'm not at home) so you can ask me questions that might pop up. Good luck.

    Sharon

     
    Old 04-12-2006, 08:30 AM   #5
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Thanks so much. It is nice to have someone help me out. This is such a difficult journey and it is nice to have other people that understand. I am going to get another LSB in a couple of week and and then discuss the possibilty of a pump!!!!
    Hope you are having a great day!
    txmomof3

     
    Old 04-12-2006, 04:35 PM   #6
    sharon1030
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    Smile Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    You're very welcome. Good luck with the block.

    Sharon

     
    Old 04-13-2006, 06:33 AM   #7
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Dear TX:

    Hi! I'm on the other end of the spectrum from Sharon. I have had a SCS for the past 2 years. I love mine. It helps me deal with so much of my pain. Recently my main lead went down and sinec the battery I have in now is not recahrageable, I am getting an ANS recharable battery and leads inserted next week. This will last 7-10 years. Healing with the SCS takes between 8-12 weeks. Most MD's say 8, but my MD had me do 12. I really think that it is worth the extra month. No bending, twisting or raising your hands above your head. It's important to let the lads scar onto your spine. It's hard with children. I know I have two girls that are very active. I can answer any questions you have about the SCS.

    I think you have to find what is best for you. With me its a combination of things. I guess what I am trying to tell you is that it sometimes takes a lot of hits and misses to get to a comfort zone. Do what it best for you. We'll all support you.
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    Old 04-14-2006, 08:37 AM   #8
    palarin
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Dear TX:

    I have the SCS box implanted for pain in my lower back down through both legs and into my feet. I had the Intrathecal Infusion Pump put in last October to help distribute morphine throughout my body because my RSD had become systemic in all limbs along with various attacks on my organs.

    Prior to becoming systemic, the SCS box was very helpful to me. I was able to continue working and my pain was minimized. However, the infusion pump can be setup so that bolis injections (extra-morphine) can be sent through the bloodstream at certain times during the day when it is most difficult for you.

    You have to look at your situation so that you make the best decision for yourself. This board is full of information about all kinds of topics. Good Luck with your decision.

    Marie

     
    Old 04-15-2006, 03:23 PM   #9
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Thanks for all the great information guys!! It is so nice to find people that understand the disease and what it and the treatments do to you. I think ultimately it is going to come down to two factors. One, if I can get my doctor to agree to mix bupivicaine with a pain med, I think that would really help me. Two, I feel like I am rapidly getting worse, and I don't want to spend all summer healing from having an SCS put in when I have three kids at home. Obviously, it will ultimately be up to my PM doc on which one he prefers to use (if he decides to go with that instead of another round of 6 LSB's 1-2 weeks apart). I don't really care what they do at this point, I just want to have somewhat of an improvement. I have given up on the idea of a total cure(although there is always that chance that I could be lucky and it will go away...but the chances of that decrease the longer I go with RSD), I just really like for my pain level to stay at 3-4 daily (I can function pretty well at that level with everything I have been through).
    Anyway, it is just so nice to be around people that truly understand this journey. CP is a lonely journey as is RSD. So, when the two are combined, it becomes extra lonely sometimes. Thanks for being here for me!!
    txmomof3
    Aug 2004 - Talar dome fracture (middle ankle bone)
    Oct 2004 - 1st surgery
    Feb 2005 - 2nd surgery
    Apr 2005 - Dreaded diagnosis of RSD
    Today - Making it one day at a time!!

     
    Old 04-15-2006, 05:09 PM   #10
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    Smile Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Hi,

    I get your statement that you've given up on a total cure (although..you never know, right? ). Once I finally got to that stage, life was so much better for me. It took me many years to get to it though because when I was diagnosed 20 years ago, my doc kept telling me he didn't know anyone who had it longer than 10 years and that it would go away by then so I believed him for a while. It's hard to get to that stage, but once you do, you can kind of get on with your life. Don't you think?

    I hope you can get your doc to do the pump with bupivacaine in it. I really think the bupivacaine is what helps me the most. Good luck and keep us posted.

    Sharon

     
    Old 04-15-2006, 06:51 PM   #11
    Lizotte
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    TX:

    Watchthe lumbar injections, they can include steriods and you don't want that every 1-2 weeks. Mine are scheduled every 10-12 weeks apart now because of that.

    I agree with Sharon, that coming to terms with the extent that RSD effects your life is a vital part of the healing, present and future treatment process. The diagnosis is such a shock. I don't know about anyone else, but I was in denial. My brain couldn't get encompass the enormity of it. This is the forty, fifity, etc. years. You'll never be without RSD.

    Now, I fight for comfort. A combination of meds, exercise and SCS that works for me. One piece at a time. Maybe your PMD didn't give you the DX, but they are the ones you see each month. You know, it's not in our heads. Mine is in my lt ft and after dustpan surfing all the way up to my lt knee, but that's another story for another time.
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    Old 04-16-2006, 06:04 PM   #12
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    Thanks SO much for your concern and advice. It is so nice to hear from people living with this disease every day like me...not just family members who want so desperately (even more than we do) for us to get back to "normal" (whatever that is ).
    This will be my final series of blocks. My PM doc is trying to stop the spreading that is occuring by hitting it fast and hard. If I am not getting better by the second block, I will stop the series. If I was going to continue with blocks after this, I would spread them out more, but at this point they are kind of a last stop before an implant. Last time, the only relief I got was from the bupivicaine and roxicaine in the injections, and I want to see if that is still the same case. If that is the case, I am going to ask for an intrathecal pump with bupivicaine and some morphine or an equivalent.
    I really appreciate you looking out for me (especially when I have just joined the board). It is so nice to have other opinions!!!
    txmomof3

     
    Old 04-18-2006, 11:07 AM   #13
    LLS1948
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    I have RSD in my rt knee that has now gone into my rt foot. I am likely going to be getting the SCS within 5-6 weeks at least the trial then. I am so excited and hopeful at the prospects this could be for me! I know that my husband's cousin had the intrathecal infusion pump and it ended up twice leaking on him. I'm sure that each one of these devices carries some type of risk with it but that was one reason that led me to make my decision to go with the SCS. I am curious if others on here could give some more information on the recovery. I heard the one give a little bit about it but any and all information would be greatly appreciated! Do you think I'll be able to at least get in the pool with it this summer? I know I can't go swimming actually because of the restrictions but to at least get on a float and lay around in the pool would be wonderful!!! What type of recovery is there for the pump vs. the SCS? I don't think I really checked that because I was so much liking the SCS but am curious what the difference in recovery is. Whatever decision you make I'm sure it will be the best one that is the best for you! I wish you all the best in your decision making and procedures that lie ahead! One question I have for anyone on here is that the SCS or the pump does nothing to stop the spread of this though does it? All this does is stop or alleviate the pain - correct? What's to stop the spread of it ?????? Once I have this SCS this thing can keep spreading then right???? Lori

     
    Old 04-18-2006, 05:24 PM   #14
    txmomof3
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    I would think you could get in the pool on a float after the incision is healed, except for the fact that you can't twist or bend for 3 months. It would be risky to be on a float for that reason, but I would talk to your doc about it. I think that the choice should be made btwn a SCS and an intrathecal pump individually also with your PM doc and family. For me, the intrathecal pump seems to be winning at this point, because I think it will work better.
    Good luck,
    txmomof3

     
    Old 04-26-2006, 04:42 AM   #15
    Scrufysdad
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    Re: Spinal Cord Stimulator vs. Intrathecal Infusion Pump

    This is incredible this posting. I am scheduled to see my PMD today to discuss my possible implant for a temp SCS. Being scared is my main concern because i have read/heard that you can't go into a pool or drive with the unit. What! Yes, I plan on speaking to my dr about this. Has anyone heard of this. What is the prognosis with you SCS? Please tell.

     
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