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  1. #1
    ICN Member aprilchen's Avatar
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    Any Success with Interstim Therapy????

    Hi,

    I read about Interstim therapy...I think the surgery where they put the device at the sacral nerve to control IC. Has ANYONE had success with it at all? All the conventional drugs used for IC like Atarax, Vistaril, Elmiron, Elavil, etc. have not worked for me and have created adverse side effects.

    Right now, I am on Pyridium PRN for flares, Urogesic Blue four times a day, Valium and Lortab when it's severe. I want to get off the pain meds, but everytime I try I experience a setback and need more. I have a chronic pain specialist who prescribes them and will continue to do so, but I am just simply tired of them.

    In a way, I am scared to try Interstim Therapy because I have heard both a lot of negatives and positives about it.

    PLEASE help! What are the risks/benefits and where can I find more information on this? My next appt. with the Urologist is February 16th and I want to have some ideas for how we can treat this. I simply can't deal with the pain anymore, but don't want to create more problems with Interstim if it's contraindicated.

    Thanks and God Bless!

  2. #2
    ICN Member tigger_gal's Avatar
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    Hi April,
    I have success with my interstim, how ever it is not used to control IC, it is used to help with frequency and urgency, if they said it would control IC that would mean it would have to control our pain, which it dose not.
    At the bottom on my page before my pooches, is my sticky on what you should know about the interstim.

    you can go to the website www.interstim.com,

    Please note that the interstim is NOT for Pain.
    'The will of God will never take you where the Grace of God will not protect you.'

  3. #3
    Forum Manager ICNDonna's Avatar
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    Tigger is right. The interstim is not intended for pain.

    Donna
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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  4. #4
    Canada IC Coordinator DebbieB's Avatar
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    Hi April,

    I have had the InterStim now over seven years, very wonderful success with the InterStim.
    It is mainly used to help with frequency and urgency, as Tigger said it is not for pain, although I am one of the lucky ones that had great results in having no pain since I had the InterStim done.
    Everyone is so different in this procedure as in other procedures it might help one and not help the other one.
    Also the InterStim by no means is a over night fix it took me a good eight months to get to right place with the adjustments and setting on the Implant..
    Also it was the very last resort for me after trying many different meds and treatments ..

    The main thing is to find that right doctor that does this procedure that is half the battle in this procedure.

    There are lot of us ones with great success and yes there are lots that had lots of problems and had to have it removed.

    You are the only one that can decide if it is the right thing for you !!

    I wish you all the best at what ever treatment or meds , it does take time to find what can help you too..

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

  5. #5
    ICN Member aprilchen's Avatar
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    More Interstim Therapy Questions

    Hi,
    Thanks for the responses on Interstim Therapy. I still have some other questions, so please bare with me. I appreciate this information and board so much. You have no idea how much this means to me when there are other people to talk to about this.

    1. How complex is the implant? Is it a hard surgery as far as recovery?

    2. I knew it was not for pain, but my biggest problem is because of urgency and frequency.

    3. I always FEEL like I have to go urinate 60 times a day and even a little comes out. Sometimes I feel like my bladder is SO full and I can't empty it completely. So, I have wondered if asking my urologist to teach me to self-catheterize is a common practice.

    4. The other night we had two ER visits following my hydrodistention and cysto wherein I had to be catheterized and there was at least 400cc of urine that I could not pass without the catheter. I had to wear that god awful nasty bag home. Not only that, but the Pyridium stains EVERYTHING, including my toilet and wearing panty liners all day long everyday stinks. Suggestions?

    I have tried all the other drugs: Atarax, Vistaril, Detrol-LA, Flomax, Elavil and Elmiron all with no success and I just don't know where to go from here. I am SO frustrated.

    Thank you for answering these questions for me...especially since you have had the interstim therapy. It is a surgery, right? How long for recovery?

  6. #6
    Canada IC Coordinator DebbieB's Avatar
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    Hi April;

    1. How complex is the implant? Is it a hard surgery as far as recovery?

    Well the surgery is done at the bottom of the spinal core area, where they place a lead wire in either sacral nerve 2,3 or 4 area.
    The Implant is place over the right side of butt area ..
    When I had it done my incision were much longer then they do it now.
    It has improved in over the seven years or so.
    It was a over night stay in the hospital, I was pretty sore in the back area for a good week or so, I was up and doing laundry the second week and out driving the third week, now it all depends on how well you heal and recovery we are not all alike in this .
    You can not do any heavy lifting for the first three weeks after surgery.

    2. I knew it was not for pain, but my biggest problem is because of urgency and frequency.

    It does work in the urgency and frequency really good but it took me some time to have the right adjustment with the Implant about eight months to have a really good results .

    3. I always FEEL like I have to go urinate 60 times a day and even a little comes out. Sometimes I feel like my bladder is SO full and I can't empty it completely. So, I have wondered if asking my urologist to teach me to self-catheterize is a common practice.

    Yes I remember going every 10 minutes to the bathroom , always seem to be that my bladder was never empty..
    I am a bit different then everyone in this area I stop peeing all together and had to do self-catheterize every four hours for over a two and half year span, until I found the right doctor that knew what was my problem, so with me the InterStim was a blessing as to me when I had it done I was able to pee on my own without a catheter after the procedure was done.



    I hope this has help you a bit April in your questions too.
    If you would like you could PM me any time ..

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

  7. #7
    Support Leader Sarojini's Avatar
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    Hi April -- I am starting the InterStim process this Friday with my trial lead placement. I'll let you know everything about the surgery as soon as I can -- I know they will be doing the trial as an outpatient surgery, with local anesthesia and sedation (so they can periodically wake me and ask if the stimulation is in the correct place), rather than general anesthesia.

    Later, if this works, I will have the permanent implant February 16th; again, when I know more I'll let you know as it happens, but I do know that will be under general anesthesia.

    I do know the process is much more streamlined nowadays; I will be getting the InterStim II, which is smaller than the older one (approximately the size of a casino chip, my doc said).
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  8. #8
    Canada IC Coordinator DebbieB's Avatar
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    Hi Jen,

    I wish you all the best on Friday doing your trial..

    I hope it is a great success for you Jen.


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

  9. #9
    ICN Member aprilchen's Avatar
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    Quote Originally Posted by Sarojini
    Hi April -- I am starting the InterStim process this Friday with my trial lead placement. I'll let you know everything about the surgery as soon as I can -- I know they will be doing the trial as an outpatient surgery, with local anesthesia and sedation (so they can periodically wake me and ask if the stimulation is in the correct place), rather than general anesthesia.

    Later, if this works, I will have the permanent implant February 16th; again, when I know more I'll let you know as it happens, but I do know that will be under general anesthesia.

    I do know the process is much more streamlined nowadays; I will be getting the InterStim II, which is smaller than the older one (approximately the size of a casino chip, my doc said).
    Thanks for the information. I really do want to try this if nothing else works, but please let me know how it goes. I would like to hear that it has been a success for someone before I undergo another surgery. God Bless and we will be praying for your surgery Friday.

    April

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