It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

  • Spinal Cord Stimulator Questions

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 09-21-2007, 07:07 PM   #1
    imadeamistaka
    Junior Member
    (male)
     
    Join Date: Jul 2007
    Location: Pa
    Posts: 35
    imadeamistaka HB User
    Spinal Cord Stimulator Questions

    Hello Everyone,

    I have an appointment next week with a new neurosurgeon from John's Hopkins and I was looking for your help with some questions. I had my trial several weeks ago and was a little disappointed, during the procedure they found a great spot that covered all of my low back pain and leg pain but when I got home the leads had migrated and I lost the low back coverage.
    I have researched all of the companies and there products and have decided on a Medtronic unit and there new paddle lead because of less chance of it moving and I hope it does a better job with low back pain. Has anyone requested to be woken up in the middle of the surgery to test the paddle lead to make sure it is in the correct place? I read the post about being able to feel the whole surgery! Yikesssss!
    I know that there are no warranty's with any procedure.
    Thanks Kelly for resonding earlier,
    Jeff

     
    Sponsors Lightbulb
       
    Old 09-21-2007, 07:32 PM   #2
    lostmary
    Senior Veteran
    (female)
     
    lostmary's Avatar
     
    Join Date: Jun 2004
    Location: Fredericksburg, Virginia
    Posts: 517
    lostmary HB User
    Re: Spinal Cord Stimulator Questions

    Jeff,

    I wish I could help. I'm going to Georgetown University Hospital in Washington D.C. to see about getting a trial stim. They use a Medtonic there. I looked it up on the web. How did it go getting the scs.. Were you awake during it? how long did it take? any info would be great. I'm excited to get it. If you go to the Medtonic web site, you can see the video with Jerry Lewis who also got one in 2002. He swears by it.

    Mary

     
    Old 09-21-2007, 08:08 PM   #3
    imadeamistaka
    Junior Member
    (male)
     
    Join Date: Jul 2007
    Location: Pa
    Posts: 35
    imadeamistaka HB User
    Re: Spinal Cord Stimulator Questions

    Mary,
    The trail procedure is normaly about 45 min. you are awake so you can give feedback to your doctor. I was face down and the nurse anesthetist was right in front of me talking with me the whole time.(She was wonderful) My procedure took 2hr and 30min. I have a large epidural space and they kept trying to find the sweet spot again. When I got home I only had leg coverage and depending on how I sat I could get some low back, that is why I am going for the paddle lead, it is difficult to get the leads to stay midline on the trial.
    After having three back surgeries with instrumentation the trail was not bad. The Medtronic rep will program your unit with several different settings for you to play with at home and you can decide the one that helps the most.

    I am just having another consult next week. I hope all goes well for you and that you get great pain relief. My Medtronic rep. put things into perspective for me, he said a spinal cord stimulator is just another tool that we can use against the pain! I am hoping that I will be able to cut back on my pain meds. and be able to think clearer and go back to work.

    Good Luck!
    Jeff

    Last edited by imadeamistaka; 09-22-2007 at 05:26 AM.

     
    Old 09-22-2007, 05:09 AM   #4
    lostmary
    Senior Veteran
    (female)
     
    lostmary's Avatar
     
    Join Date: Jun 2004
    Location: Fredericksburg, Virginia
    Posts: 517
    lostmary HB User
    Re: Spinal Cord Stimulator Questions

    Jeff,

    sorry, I meant when you got the trial. My mind is going on vacation at the moment. Short term is bad. I want to get off the meds and back to functioning like I used to. do the reps work with you the whole time? I go thurs. and can't wait. I know it will do well. I also know that we will still have not so good days, but at least you can turn it up and block the pain. On one hand I'm scared of it, and on the other hand I can't wait. How do you feel?

    Mary

     
    Old 09-22-2007, 05:59 AM   #5
    imadeamistaka
    Junior Member
    (male)
     
    Join Date: Jul 2007
    Location: Pa
    Posts: 35
    imadeamistaka HB User
    Re: Spinal Cord Stimulator Questions

    Mary,
    The reps work with you the whole time. I did a lot of research into the other companies and there products. I am 46 and feel I'm heading down hill fast!
    I used to be a letter carrier but had to retire on disability. My mornings are the worst, it takes me two hours to start to feel good enough to get moving.
    I also watched the Jerry Lewis clip on his scs and got my hopes up. My rep said that 60 percent of his patients never turn off the stimulator's and some show up at there apt. without there remotes. I have a friend that is on her third stimulator, broken wires, dead battery and so on but she said she could not make it without hers. My expectations where just to high after reading all of the stories where people did not need there pain meds. anymore.The trail left me disappointed but it did help considerably. I am just praying the doc. can find the sweet spot again and it scars in OK.

    Good luck,
    Jeff

     
    Old 09-22-2007, 08:06 AM   #6
    Bekah61
    Member
    (female)
     
    Bekah61's Avatar
     
    Join Date: Jun 2007
    Location: Caribou,Maine,U.S.A.
    Posts: 51
    Bekah61 HB User
    Re: Spinal Cord Stimulator Questions

    Hello Jeff, I had my scs done in November 2006 at John Hopkins (whos your doc) I love mine I leave it on all nite seems like it works best for me that way, I do use it during the day on and off depending on what my activity is, I did run into a little problem though around Feb.2007 I had a wire that broke where it was anchored along my spine, make sure they make some kinda sleeve to anchor it to anyways in April of 2007 I had it revised and so far so good. Just be very careful for the first six months no twisting, or lifting or anything than would affect any migration of the wire. Just be a little quiet church mouse and be still, just use your common sense your body will let u know. I went to John Hopkins because they had the best reputation around and Dr. I saw was supposed to be the best. R.North was mine, anyways good luck to u I hope it all works out for u, it certainly helps my nerve pain in my legs, u might need pain meds from time to time and let me tell ya not being on Pain meds 24-7 has certainly cleared my head and my memory starting to get my life back and its wonderful after 26 yrs. of misery I'm 45 now, actually I'll be 46 tomorrow but don't tell anybody cause I don't celebrate birthdays anymore lol. Take care and God Bless let me know how it all works out both of u Mary and Jeff. Bekah61

     
    Old 09-22-2007, 11:40 AM   #7
    Bekah61
    Member
    (female)
     
    Bekah61's Avatar
     
    Join Date: Jun 2007
    Location: Caribou,Maine,U.S.A.
    Posts: 51
    Bekah61 HB User
    Re: Spinal Cord Stimulator Questions

    Quote:
    Originally Posted by Bekah61 View Post
    Hello Jeff, I had my scs done in November 2006 at John Hopkins (whos your doc) I love mine I leave it on all nite seems like it works best for me that way, I do use it during the day on and off depending on what my activity is, I did run into a little problem though around Feb.2007 I had a wire that broke where it was anchored along my spine, make sure they make some kinda sleeve to anchor it to anyways in April of 2007 I had it revised and so far so good. Just be very careful for the first six months no twisting, or lifting or anything than would affect any migration of the wire. Just be a little quiet church mouse and be still, just use your common sense your body will let u know. I went to John Hopkins because they had the best reputation around and Dr. I saw was supposed to be the best. R.North was mine, anyways good luck to u I hope it all works out for u, it certainly helps my nerve pain in my legs, u might need pain meds from time to time and let me tell ya not being on Pain meds 24-7 has certainly cleared my head and my memory starting to get my life back and its wonderful after 26 yrs. of misery I'm 45 now, actually I'll be 46 tomorrow but don't tell anybody cause I don't celebrate birthdays anymore lol. Take care and God Bless let me know how it all works out both of u Mary and Jeff. Bekah61
    ( Forgot to mention that I have Medtronics)

     
    Old 09-22-2007, 06:05 PM   #8
    imadeamistaka
    Junior Member
    (male)
     
    Join Date: Jul 2007
    Location: Pa
    Posts: 35
    imadeamistaka HB User
    Re: Spinal Cord Stimulator Questions

    Bekah,

    Thanks for the info and HAPPY BIRTHDAY!!
    I had a consult with Dr. North several years ago but I needed more surgery and went with Dr. Belzberg. Dr North was not taking Blue Cross or Blue Shield.
    I am meeting Dr. Garonzak on Tue. Just praying this helps. I hope I can be a church mouse for that long !! The pain has been getting worse and worse and my pain management doc. said he dosn't want to increase anything. Your post gives me hope

    Thanks again and have a great day tomorrow!
    Jeff

     
    Old 09-24-2007, 05:49 PM   #9
    Bekah61
    Member
    (female)
     
    Bekah61's Avatar
     
    Join Date: Jun 2007
    Location: Caribou,Maine,U.S.A.
    Posts: 51
    Bekah61 HB User
    Re: Spinal Cord Stimulator Questions

    Thank you Jeff for the B-day wish, I hope all works out with u let us know how u make out it sure is nice to talk to someone that has been thru the same thing. Anything I can help u with or answer any questions, just post it under spinal cord stimulator I usally check there. God Bless Jeff

     
    Old 09-24-2007, 05:52 PM   #10
    Bekah61
    Member
    (female)
     
    Bekah61's Avatar
     
    Join Date: Jun 2007
    Location: Caribou,Maine,U.S.A.
    Posts: 51
    Bekah61 HB User
    Re: Spinal Cord Stimulator Questions

    Oh yes, just remember be patient and be still be very careful for a few months afterwards it'll pay off. Bekah61

     
    Old 09-25-2007, 03:43 PM   #11
    erikkaberry
    Member
    (female)
     
    erikkaberry's Avatar
     
    Join Date: Aug 2007
    Location: Cleveland, Ohio , USA
    Posts: 56
    erikkaberry HB User
    Re: Spinal Cord Stimulator Questions

    I am waiting for my trial to get schedueld. I hate living a life full of pain. But I found out my Dr. wants to send me back to a rehab hospital I was at earlier this year... to make a long story short I got worse. My mom and I are doing all thet we can to stay out of the rehab hospital without losing my Dr. I doubt he will do the trial without sending me to the rehab hospital. So we switched to an OT from a pt in hopes I will make more progress. I am 18. I can't live like this.

    Erikka

     
    Old 09-25-2007, 07:49 PM   #12
    imadeamistaka
    Junior Member
    (male)
     
    Join Date: Jul 2007
    Location: Pa
    Posts: 35
    imadeamistaka HB User
    Re: Spinal Cord Stimulator Questions

    Erika,
    Everyone is different but I feel like you, I always was worse after therapy than before I went in. I have a date for my scs surgery now but I have to have an MRI of my thorasic spine done. The doctor thinks I may have stenous at T8-9., if that is the case I will need more surgery. I hope you have less pain tomorrow and good luck!
    Jeff

     
    Old 09-26-2007, 05:26 PM   #13
    erikkaberry
    Member
    (female)
     
    erikkaberry's Avatar
     
    Join Date: Aug 2007
    Location: Cleveland, Ohio , USA
    Posts: 56
    erikkaberry HB User
    Re: Spinal Cord Stimulator Questions

    Thanks Jeff,

    We had it all set up but had to keep pushing the surgery date back b/c my Dr. kept going out of town. Now my mom revealed to me he changed his mind...ahhh! I really don't know if I can go through with it if the rehab hospital is a part of the deal. I got so much worse there 1 week impatient / 1 week out patient and I swelled beyond what I usualy do. Now I am sick with nerves. I don't know what to do ... I don't want to lose my Dr. but I just can't go back. Oh and something weird's happenig my hand seems looser! yeah!'

    Erikka

     
    Old 09-27-2007, 01:40 PM   #14
    lostmary
    Senior Veteran
    (female)
     
    lostmary's Avatar
     
    Join Date: Jun 2004
    Location: Fredericksburg, Virginia
    Posts: 517
    lostmary HB User
    Re: Spinal Cord Stimulator Questions

    I just saw the doc at Georgetown University Hospital. He said that I need the scs as it has started to spread to the other foot and up the leg. He is going to do a block on Oct 8th, just so the insurance co can't say everything hasn't been done. I hope I get the trial soon. can't walk much anymore and I'm back to not sleeping.

    Mary


    ps. doc said he would do the neve block under sedation as I can't do pain anymore....yeah

     
    Old 09-27-2007, 05:11 PM   #15
    imadeamistaka
    Junior Member
    (male)
     
    Join Date: Jul 2007
    Location: Pa
    Posts: 35
    imadeamistaka HB User
    Re: Spinal Cord Stimulator Questions

    Mary,
    I think we may have the same Medtronic rep. when we get that far!
    Barry met me in the doctors office and helped explain my case and my concerns. I have been very pleased with there service, they have helped me understand the limitations of certain leads. I had to go for the blocks also before I could get my trial. I'm sorry to hear you are having trouble walking, with my trial I had great pain coverage of my legs. I am taking Elevil to help me sleep it works wonders.

    Take Care and I hope your pain quiets down!
    Jeff

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    spinal cord stimulator questions deviphish Back Problems 36 06-28-2011 07:47 PM
    Removal of Spinal Cord Stimulator. foreverangel143 Reflex Sympathetic Dystrophy (RSD) (CRPS) 39 01-23-2011 10:09 AM
    Spinal cord stimulator questions MNPAIN Pain Management 34 11-24-2010 06:58 PM
    Spinal Cord Stimulator Kris with RSD Reflex Sympathetic Dystrophy (RSD) (CRPS) 44 10-20-2010 08:35 AM
    Spinal cord stimulator -Shawley, need advice please Lynne720 Back Problems 21 05-06-2010 10:45 AM
    spinal cord stimulator implanted JeffersonGuy Neuropathy 5 06-13-2009 06:06 PM
    Spinal Cord Stimulator vs. Intrathecal Infusion Pump txmomof3 Reflex Sympathetic Dystrophy (RSD) (CRPS) 18 05-02-2006 05:16 PM
    Do you have a Morphine Pump and a Spinal Cord Stimulator Box? palarin Pain Management 2 09-15-2005 08:52 PM
    spinal cord stimulator curvil Back Problems 31 05-15-2003 01:43 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:33 AM.





    © 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!