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  1. #16
    Canada IC Coordinator DebbieB's Avatar
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    Hi lexur;

    Well this is my two cents worth...... I have had the InterStim Implant now over six years and am having wonderful results with it , I just thought I let you know that there are lot of us ones out there with wonderful experience with the InterStim.....

    But then I got on the net and starting looking into interstim, I didn't realize it was sooo controversial, ...... Yes lexur it is a very controversial subject on these boards but as I always say....

    It has to do with the doctor experiences in doing this procedure and look into it and see how many patients he did and if you are able to chat with some of his patients that is very helpful.......

    Also is has to do with the placement of the wire in the sacral nerve areas if you get the right place for good results...

    The InterStim trial is where you will know it is going to help you and if you have wonderful success with that then you go for the real thing it is way different then the trial...some how people think they will have wonderful result over night and no way is it at all...

    It takes awhile for the body to accept the new object and a while to heal so I did not have any good result until in my eight month of having it so no way it is a over night fix in any way...

    In the last thing is that is the very last resort after doing every kind of meds and other treatments then it is something that you can think of doing but again it is not for every one it is a very personal decision and "Only You " can decide to do it ...we are all so different in this procedure as well..

    I wish you all the best of what you decide to do lexur .....


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

  2. #17
    ICN Staff ICNDonna's Avatar
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    For Lexur

    Interstim placement is usually not even considered until it's a last resort. Even those who are having success will agree that it should not be undertaken until other treatments have been tried and failed.

    If you have a physician who is telling you this is the only thing that will help, my suggestion would be to at least get a second opinion.

    And, very important, if you decide to go for it, I suggest you get in writing an agreement with the physician that if you do have a problem and want it removed, he will remove it.

    If your insurance plan covers medications, I suggest you have your doctor assist you with an appeal to get your Elmiron covered. Inasmuch as it's the only oral medication on the market specifically for IC, I think they will eventually cover it for you.

    The Patient Handbook at http://www.ic-network.com/handbook will give you an idea of the many treatment options you can try. I suggest you try them before considering interstim therapy.

    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    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.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  3. #18
    ICN Member patricia1's Avatar
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    I have the interstim. Got the first one in 2001 and had to have a revision in May of 2005. Please, Please try all other forms of methods before choosing this one. And do lots of research. Some of us have had nothing but wonderful luck and some of us have not. Even after my revision I am still having problems. Go back and look at the Interstim forums also before going this route. It can be a blessing and it can be an insturment that had not helped one bit. Best of luck to yo.,
    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

  4. #19
    Registered User lexur's Avatar
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    Lightbulb

    Thank you for the suggestions...and actually I have been on vistoril and am currently on ditropan 10 four times a day, and I'm having spasms that I just can't handle...This morning I was down in the fetal again..

    Yes I have been a little more active, but only because I am once again a single mother and I'm just trying to give my daughter the attention she deserves and work and trying to find care for her and now i've got to find a new job so that i can have a set schedule...I think that in itself would help, but i have to b/c of my baby...To tell you the truth I'm quite scared that I'm not going to find another job/manager that will be so understanding and work around my doc appt/surgerys/no babysitter...

    But as far as herbal "medications", every time I have tried herbs for my endo/posttraumatic/bipolar/(new intestinal problems), it has back fired on me...and I can't afford to just go out and buy all these herbs, nor the time...k


    I've decided that I'm going through the interstim, I mean if it works for me I can get both my daughter and I's life back on track...going up instead of down....

    I'll let everyone know how I'm doing and is it works or not...I could use some prayers...

    many blessings to everyone and may your pain be subsided, for at least an hour.... maybe that'll work....


    thank you so much
    Lex

    23 and mommy to my 3 yr old daughter Emmagyn
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Always look on the bright side of life, da dum, da dum da dum da dum...
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

  5. #20

  6. #21
    ICN Member Claredale's Avatar
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    Interstim

    Quote Originally Posted by tigger_gal View Post
    I think the advice is well given.. I also want to add that when you have the interstim put in, you should not go thru securtiy if at all possible at an airport, bus station, or train station.. because Medtronics gives you a card so you do not have to do so. I have avoided security gates by simply showing them my card....
    Reguarding the diathermy and mri's... they cleary tell you and have in black and white, that you cannot have these procdures. remember to keep that in mind Mri's is a test that they catch strokes on and other issues that only can be detected thru this procdure. even with the device remover you still may not be able to have this done.

    bowel perforations resulting in the lead migrating out of the rectum during bowel movements usually only occurs if your doctor has left the leads to long or has weaved them thru your bowls to place the device in your stomach.. I would think that would be at a higher risk to patients..

    Most interstim failures end up being dr error.. Please make sure your doctor has been trained to do this, and ask alot of questions.. Don't be rushed out the door, if your not satifised with your answer.. re word it just in case it was mis-understood.


    The interstim is not fda approved for IC, because if it was it would have to help the pain.. and keep in mind it dose not....
    It is approved for frequency and urgency and inconstitence..

    Take your time in making the decision on getting the interstim.. ask lots of questions.... and let this be your decision not someone elses.. try everything before a surgery

    I have had my interstim since 2003.. I have never had any bad side affect, no numbimg, no twitching, no toe curling, no pains in my legs.. I wish every one could be so lucky.....
    I researched the interstim over a year before I made my decision.. I hope every one researches before jumping into getting a surgery..

    Hugs
    Cindy
    I know that this is an old thread, but I wanted to mention that it is okay to go through the security screening. I do show my card and all now, but I still have to go through. The first time I flew was literally 2 weeks after my surgery. My dad had just gone into a coma and they had called in the family. When I told the guard that I just had an implant in my bottom area, they waved their wand over it (I didn't have my card yet!). I was so afraid that it would hurt, but it did buzz just a little. The guard was careful not to touch my incision site, but he did take his time with me. Of course this was right after 9/11 as well. Anyway, whey I first got the implant, I would set off the alarms at Kroger and Target almost everytime. I guess the alarms aren't as sensitive anymore, because it's been awhile since I have set off anything. It doesn't even make a sound when I go through security at the airport. I always had fun telling the employees at Kroger that it was because of my implant. I loved the look on their faces!

    I do have it written on all my records that I can't have an MRI.

  7. #22
    ICN Member Elaine64's Avatar
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    what they didn't tell me

    I am in the middle of a Stage 2 Interstim trial.

    What they didn't tell me in advance is that this does NOT work over night. In fact, I am worse off then I was BEFORE the surgery. I now have lost the ability to urinate when I have to. It takes 10 minutes and an act of God just to start a trickle, and that's it. I now can no longer empty my bladder, so my frequency has actually gone UP instead of down.

    I will have to undergo another surgery to have it removed. All narcotics, since the onset of IC put me in retention, so I am doing this without the help of pain meds.

    They make this sound like a miracle cure. It is a nightmare. When I saw my Dr. 2 days after the surgery, he just said "well, it can take 3 weeks to kick in". REALLY? Why was I NOT told that BEFORE surgery.

    I am wracked with anxiety, and my life has become one big dark bathroom...

  8. #23
    ICN Member
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    Interstim

    I had the second phase of the interstim implant a little over a week ago. I've done my research and asked a lot of questions. The scariest thing is though that it's different for everyone and with every doctor. Some people's surgeries were much different then mine. It ended up being a little more painful then I expected and my recovery time ended up taking longer than I planned as well. I'm having pain in my butt like a random sharp pain that the doctor thinks is pockets of blood pushing on my nerves as is still hurts if I turn the machine off. I'm still slightly nervous of this but it seems to be getting better over time. My IC symptoms are almost completely gone...even the pain! SO I'm hoping everything will turn out. Only time will tell. But yes it's a very serious procedure and it is VERY important to ask lots of questions and research to see if it's right for you. To me it's worth the risk...I've tried EVERYTHING else and found no relief. It's also important to have a good support system and even if possible someone to go to appointments with you to ask questions you forget or may not think of. It helps to have someone there also to remember things you may not remember later as well and to talk it through with. I was very lucky to have a friend who had the procedure before me to whine to and ask questions even though things were very different between her procedure and mine.

    Good luck to everyone in making these type of decisions and if you need support I'm your girl!

    ~Kat~

  9. #24
    ICN Member snowgirl's Avatar
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    kat do you have the intestim with the two leads or did you get the new one with sixteen lead one to sacral nerve and pudeanal nerve as well
    wow you ic symptoms are almost gone? are you off pain med then?
    how many times are you gettig up at night
    how many hrs can you go without urinating
    i have had ic twenty plus yrs. I have thought of interstim over the yrs but scared
    i like reading your great success with the interstim vicky

  10. #25
    ICN Member willow2389's Avatar
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    Quote Originally Posted by snowgirl View Post
    kat do you have the intestim with the two leads or did you get the new one with sixteen lead one to sacral nerve and pudeanal nerve as well
    wow you ic symptoms are almost gone? are you off pain med then?
    how many times are you gettig up at night
    how many hrs can you go without urinating
    i have had ic twenty plus yrs. I have thought of interstim over the yrs but scared
    i like reading your great success with the interstim vicky
    I did not know there was a new one when did they start putting the new ones in. I have to have a new one and am wondering if that is what they will use on me and does insurance cover it.

  11. #26
    ICN Member snowgirl's Avatar
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    had a friend with ic just get one. it has 16 leads one lead goes on sacral nerve one lead pudenal nerve. now this implant being put in by neurosurgeon not urologist and that makes so much more sense to me as Rn
    I do know it is used for back chronic pain pts.
    they are using it in IC pretty new and I think you will see it in IC future here
    my friend told me only few mds qualifed in usa to put it in

    pm me i know of one md in TN and one in MI that is it. I read article on it and it has cut IC pts pain meds by 50percent or no pain meds anymore

    i am sure not all ic pts are candidates md who puts them in woud decide who is a candidate and who is not.
    yes lots more lead then original intersim.

  12. #27
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    "sacral nerve root neuromodulation"

    Help! My family dr had reccommended "sacral nerve root neuromodulation" --is this Interstim? or some form of it? I do not know what this is, and the article she gave me was one smnall paragraph that said it was used for chronic pelvic pain and it reduced the pain at a rate of about 40-60%. I recall my uro. telling me a couple years ago when Interstim was brought up that it wasn't for pain (just urgency adn frequency). my family dr first mentioned nerve ablation, but at the next appt ended up giving me this info. so now I am really confused (she wants me to see a uro out of town, but they are not in my ins network, the dr that does the above procedure did it on 2 male patients of hers with severe pelvic pain and it really helped them).
    Anyone can you help define this for me?
    Thank you kindly
    Stacy

    Not sure how everyone gets their medical history to show everytine they post a message? I was dx in Jan 04 , on tons of meds for lots of illnesses.

  13. #28
    ICN Member Snowden1's Avatar
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    Hi Stacy,
    I would like to know the answer to your question too. I didn't think they were used for pain. If you want to post your medical info at the bottom of the page this is what I do. Not sure if it is right. But, I got to the private message section and on the left there is a place put in personal info. I click on that and it takes you through the options and you can review it before you submit it and make it permanent on all your post. I hope this helps, maybe someone could explain it a little better.
    Teresa

    We are not HUMAN BEINGS going through a temporary SPIRITUAL EXPERIENCE. We are SPIRITUAL BEINGS going through a temporary HUMAN EXPERIENCE....so that we may become more SPIRITUAL.

  14. #29
    Canada IC Coordinator DebbieB's Avatar
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    Hi Stacy ,

    To answer your questions !

    The "sacral nerve root neuromodulation" --is this Interstim?
    Yes it is the same name as the lead wire is placed through sacral nerve roots 2 to 4.
    My is located on the sacral nerve 2 ..

    As for the chronic pelvic pain and it reduced the pain at a rate of about 40-60%.
    It depends on you and only you," it is not for pain" it is for and approved for frequency and urgency and inconstitence.
    I was helped with my pain but I also had inconstitence , my main problem was pelvic floor dysfunction .

    I had my InterStim Implant since 1999 and I living a very normal life with my and my IC is not that bad at all , I do have the odd bladder infections but not as many as I use to..

    Please go to http://professional.medtronic.com/th...rstim-therapy/ and will help you to understand it more ..

    I hope this helps you a bit on this !

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

  15. #30
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    Re: Understanding Sacral Nerve Stimulation (Interstim, ANS)

    My understanding is that it's not yet FDA-approved for pain, but can be helpful since frequency and urgency are often part of the pain puzzle. Aetna has denied preauthorization twice, and my dr & Medtronic are appealing together. The reason I am open to it is the fact that there is a week-long trial. If it works? Great. If it doesn't? They simply take the wires out. Hoping Aetna stops calling the device "experimental," given that it is both FDA-approved and listed in their handbook as a device that can be used. I would rather take the chance that it will work then continue to take 9 million pills every day.

    ____________________________________________________________________
    Diagnosed: February 2011.
    Also have fibromyalgia, IBS, degenerative disc disease, depression and anxiety.
    Meds:
    - Venlafaxine (Effexor) 75mg 2x a day
    - Wellbutrin 100 mg, 2x a day
    - hydroxyzine HCL 10mg, 2x a day
    - Amitriptyline 60mg at night
    - diazepam (Valium) 10mg 3x a day
    - oxycontin 20mg 2x a day
    - Percocet (oxycodone) 5mg, 4-5 a day for breakthrough pain
    - Allegra 180mg 1x a day
    - Prilosec 40mg, 1x a day
    - Zarah (generic Yaz) once daily

    Tried the IC diet with no success. Already limited acidic foods due to acid reflux.
    Pelvic pain is excruciating, ranging from throbbing to stabbing. Have shooting nerve pain down interior of left leg to big toe.
    Have had 2 cystoscopies, both with hydrodistension, one with a biopsy. No Hunner's ulcers present.
    Appealing Aetna for 2 denials of InterStim.
    On private disability, paying Cobra. Awaiting hearing date for Social Security disability appeal.
    Housebound, except for dr appointments which I get driven to.
    I see my GP every 4-6 weeks, my Urogynecologist every 6-8 weeks, and a psychologist every other week.

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