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  1. #1
    Support Volunteers ICNJess's Avatar
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    Northern WI
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    Private Support Chat For People With Stim Problems

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    Hello! With permission to post this from Jill, I would like to extend an invitation to those who have had their interstims removed, are about to, or are having problems with their units/leads and want to chat about it in a private chat room. We can give each other support. If you are interested, please contact ICSonja or myself for more information.

    Jess
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

  2. #2
    ICN Member patricia1's Avatar
    Join Date
    Mar 2005
    Location
    Louisiana
    Posts
    2,061
    Great IDEA!!! Guys. Sometimes it is hard for those that have success to know exactly what someone is going through that has had a failure when it comes to their InterStims. I have seen at times when it has gotten heated and I think having somewhere for those to go and seek support is wonderful.

    Having problems with a InterStim, can feel like you are the only one exper. such problems and it can be very lonely. For me I felt alone and that know one would help me. I dont want any other person to experience this feeling.

    Again Great Idea and let me know if I can do anything.

    Jess I PM you about this.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...
    www.myspace.com/patricia_luvs_matt


    Patricia

    In Memory of My Father (Lawerence) 1/25/2007

    Procedures:
    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996


    Me and my kids


    Taylor (my daughter) Me and my daughter My son Cody and Taylor

  3. #3
    ICN Member
    Join Date
    Jan 2002
    Location
    Memphis, TN
    Posts
    10,620

    Thumbs up

    I am so proud of you for doing this. I know from reading the posts that there are a large number of people who will be helped. Great!!!!!!!!!
    Sharon

    Shopping??? Did someone mention shopping? I'll get my hat... ;-)

    Where I can be found most days.



    Link to the ICN Patient Handbook:
    http://www.ic-network.com/handbook/

    Link to the IC Diet:
    http://www.ic-network.com/diet/


    IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  4. #4
    Registered User Betsie's Avatar
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    Mar 2004
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    Hey Jess!

    What a great idea!!!!!!!!

    Knowing what a difficult topic this can turn into on the boards, this seems a great way for people trying to resolve failure issues. This way you can say what you want w/o fear of offending someone who hadn't experienced the same problems or someone in the midst of an implant.

    For those of us who have NO experience either way, it is always hard to try to be supportive, so I hope you guys get some collective information this way, and hopefully the possibility of better answers from the powers that be.

    You go girl!
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    "No one can make you feel inferior without your consent."
    Eleanor Roosevelt, This Is My Story, 1937

  5. #5
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    What a great thing Jess and Sonja. Wishing you so much luck with this, it is a very needed support area.

  6. #6
    ICN Member PurpleKitty's Avatar
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    Aug 2005
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    96
    Great idea Jess! Your support was such a help while I was going through my removal and you helped me through some pretty scary times. The added support would really help a lot of us "interstimers" who are having problems.

  7. #7
    ICN Member icsonja's Avatar
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    Aug 2005
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    Monahans. Texas
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    352
    HI all, and many thanks to Jess for her long hours of work and dedication in getting this support group on the road, she deserves the credit. I am just along to answer questions and be as supportive as possible for any who are having troubles with interstim or have had a removal or are thinking about removal.
    We are all in the same boat in this group, it is a safe place to post your true feelings and questions, without any censure.
    Please feel free to contact Jess or me for more info
    I can be reached at icsonja@sbcglobal.net
    Thanks to Jill for allowing this announcement, we appreciate all you have done.
    Sonja
    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
    Support American Cancer Society Relay for Life
    http://Relayforlife.org
    Living life on hope and a prayer.
    To read me and my family's story
    http://ic-network.com/patientstories/sonja.html
    Spinal surgery 04/06
    Interstim implanted12/04
    interstim removal 12/05
    Hysterectomy 1998
    Bladder surgeries due to hysterectomy,'98,99,00,01
    DXx with IC w/ Hunners 1999
    Chronic Pelvic pain
    Chronic fatigue
    Fibromyalgia
    Depression/post traumatic stress syndrome
    IBS
    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

    Meds:various pain meds,Soma (muscle relaxant)
    Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
    and a few others I'm sure,depending on how good I have been on my IC diet.

    Trying to keep a positive attitude, in a negative world.

    Best treatment of all, Good Friends who Understand

  8. #8
    ICN Member Peggy Anne's Avatar
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    Dec 2002
    Location
    Henderson, NV
    Posts
    109
    Hi, I sent you a private post regarding your interstim and IBS. Thanks! I think this idea is great!

  9. #9
    ICN Member Katherine's Avatar
    Join Date
    Mar 2000
    Location
    USA
    Posts
    385

    I have mine removed this year and I am so happy

    I am so glad it is out. Actually I had interstim and a stimulater removed,
    Both failured.
    katherine
    Life is what you Make It .By being kind to every one and all creatures your life will be more pleasant. Live your life for GOD and if it were the last day you were alive becausse it maybe.

  10. #10
    Registered User
    Join Date
    Nov 2005
    Posts
    3

    interstim and hating it

    I had Interstim inplant second part 12-05-06 it has not helped the pain it has helped some with going to the bathroom but I have this shocking feeling and at night I cannot sleep because my right leg has numb shocking feelings I am regreting having it done

  11. #11
    Canada IC Coordinator DebbieB's Avatar
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    Mar 2000
    Location
    Ontario, Canada
    Posts
    680
    Hi Wilma;

    Sorry to hear this about your InterStim , have you try turning down your remote setting , if you having lots of numbness and shock feeling you may need to have an adjustment to your InterStim..
    I had the problem before and I just went had a adjustment and it was fine after..
    I would not let this go on for long, I can understand why you can not sleep at night too..

    Also it will take awhile before you find the right setting for your InterStim , it took me about eight months to get the right setting.
    I have had my InterStim now over seven years and I do not have any pain what so ever since having the InterStim done, it does take awhile, it is in know way an over night fix at all ..
    Also with the InterStim I was told it did not help with pain , I am lucky that is has help me, every one is so different in having the InterStim too..

    Cheers, Debbie
    Thinking positive has got me through to another day!!

  12. #12
    ICN Member patricia1's Avatar
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    Mar 2005
    Location
    Louisiana
    Posts
    2,061
    Having the shocking and numbing feeling in your leg is not a normal thing. Like Debbie stated it can take awhile to find the right adjustment for you and that might be all that needs to be done.

    Just one side note, most people do not get any pain relief from the InterStim. There are some that do and I think it has to do with the type of pain they suffer from. I have had 2 done and I have never gotten any pain relief from either of them. I got my first one in 2001. I hope all works out and you get it straighten out. If not and you still have the shocking from it I would insit that your doctor remove the unit as it could be faulty or sitting on the nerve wrong. I have had my fair share of my units shocking me.
    God grant me the serinity to withstand the days ahead!!!

    My myspace link...
    www.myspace.com/patricia_luvs_matt


    Patricia

    In Memory of My Father (Lawerence) 1/25/2007

    Procedures:
    Interstim Sept 2001
    1st InterStim Removal May 2005
    2nd Interstim Implanted May 2005
    2nd InterStim Removed March 2007
    Hysterectomy 1999
    Tubes Tied 1997
    C-Section 1996


    Me and my kids


    Taylor (my daughter) Me and my daughter My son Cody and Taylor

  13. #13
    ICN Member icsonja's Avatar
    Join Date
    Aug 2005
    Location
    Monahans. Texas
    Posts
    352
    Hi Wilma, I had my insterstim removed ayear ago and for it was the best thing I did. But I agree first try having the settings adjusted and see if it help, but if you are being "shocked" that needs to be looked at, maybe your leads are in the wrong place, they call it "migrating" and it can cause the symtoms you are having. But my best advice is listen to yourself, you will know if something is not right, and don't take nothing is wrong for an answer when you know it is.
    If you have qusetions about what not listening to your body about interstim can do just read my story it is posted under this category..posted by Jill.
    Sonja
    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
    Support American Cancer Society Relay for Life
    http://Relayforlife.org
    Living life on hope and a prayer.
    To read me and my family's story
    http://ic-network.com/patientstories/sonja.html
    Spinal surgery 04/06
    Interstim implanted12/04
    interstim removal 12/05
    Hysterectomy 1998
    Bladder surgeries due to hysterectomy,'98,99,00,01
    DXx with IC w/ Hunners 1999
    Chronic Pelvic pain
    Chronic fatigue
    Fibromyalgia
    Depression/post traumatic stress syndrome
    IBS
    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

    Meds:various pain meds,Soma (muscle relaxant)
    Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
    and a few others I'm sure,depending on how good I have been on my IC diet.

    Trying to keep a positive attitude, in a negative world.

    Best treatment of all, Good Friends who Understand

  14. #14
    Registered User
    Join Date
    Jan 2007
    Posts
    2

    Interstim Problems

    Hello All,

    I am so glad I found this forum. I am hoping someone else can share insight. I had the temporary Interstim lead placement on Dec. 26, 2006. The Doc had routed two leads through the right side. However, for the permanent placement they pulled the left lead back through and routed it on the left, then placed one device on each side. During the trial period I had such severe pain I could not pick up either of my legs. But, when I went in for an adjustment a week later, the tech turned the devices to zero, but not off and that eased the pain. Unfortunately, since the permanent implant I have not had any benefit from using them, but have had significant sacral pain. Further, I have had many bouts of feeling like I was going to pass out. I have been checking my blood pressure and pulse and have found both to be elevated and during the bad bouts, they skyrocket. The Urologist and Medtronic say they have never heard of this and I should see my primary doc. I did, he did a brief EKG and said my heart was fine. I have no history of high blood pressure, I don't smoke, I am not overweight, and I eat pretty healthy. So, what is the cause? Oddly enough when I turn the devices off my blood pressure goes down. I have left them off for about two days, my blood pressure dropped quite a bit and my pulse. But, I am having severe sacral pain and pain in left hip even with them off. Today my blood pressure/pulse were elevated one time. Could it just be the lead placement, and gets worse when turning it on. So far nobody has any answers?? Any similarities or comments would be appreciated.

    Thanks,

    Jayne

  15. #15
    ICN Member icsonja's Avatar
    Join Date
    Aug 2005
    Location
    Monahans. Texas
    Posts
    352
    Dear Jayne, I am so sorry you are in pain and having so much trouble w/ your interstim, but you are not alone. I too had many of the same things happen to me when I has the stim in. I had mine removed due to the pain and resulting nfection. As for them telling you they have never heard of these things occuring, well, they must not be well informed about inyerstim and IC. I had bad blood pressure while I had the stim also. And extreme sacral and hip pain that went down my legs.. Turning the thing off didnt help me. My advice from someone eho has bben there done that is to go and see a nueroologist and have them evaluate your stim and see if it ok. Make sure to the Neurologist, they are the only type of DR I would let touch my spinal area. It pays to get someoe who treats spinal issues daily.
    Let me know how you do. Has the stim improved ANY symptoms at all?
    Talk to you again and keep your spirits up if you can,
    Sonja
    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
    Support American Cancer Society Relay for Life
    http://Relayforlife.org
    Living life on hope and a prayer.
    To read me and my family's story
    http://ic-network.com/patientstories/sonja.html
    Spinal surgery 04/06
    Interstim implanted12/04
    interstim removal 12/05
    Hysterectomy 1998
    Bladder surgeries due to hysterectomy,'98,99,00,01
    DXx with IC w/ Hunners 1999
    Chronic Pelvic pain
    Chronic fatigue
    Fibromyalgia
    Depression/post traumatic stress syndrome
    IBS
    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

    Meds:various pain meds,Soma (muscle relaxant)
    Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
    and a few others I'm sure,depending on how good I have been on my IC diet.

    Trying to keep a positive attitude, in a negative world.

    Best treatment of all, Good Friends who Understand

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