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  • what you should know

    When you are considering the interstim, you need to know all the luggage that comes with it.... What it will and will not do.... The good it can provide and the bad it can create.... here is a list That I think is important to read.
    1) It is not for pain

    2) The leads are not connected to any nerves, however, if the lead is not anchored correctly and it hits a nerve it can and willl cause you nerve damage. (it is possible that leads can move from a fall, or a car accident)

    3) It is used for frequency and urgency, it is not fda approved for IC, nor is it for pain

    4) At times you will experence some itching and burning around the implant site. Some of this is normal, but if it contiues more then a day or two, you need to seek medical attention.

    5) If you run into a corner and hit the stim, it will hurt like the dickens, and it will for several hours.

    6) If you lose weight, it will stick out and you will be able to feel it. It also is a possibility that you would have to have a revision. (I have gained weight, and have had no problems, but the same affect can happen)

    7) If you plan on getting pregnant you will have to turn off your stim, and a very large possibility that you may need to have a c-section.

    8) You should only consider the stim when you have exhauusted all combo's of oral treatment, and instills if your doctor will do them *but you you should research on instills too*

    9)you may have to have many reprograms, if the magnets are on. Any store security systems can reprogram you each time you enter and exit a store.

    10) Talk to your doctor in detail first, bring a list of questions. If he is rushing you I would lean towards he isn't concerned with your concerns. e's more concerned if you are going to do it and make that money.

    11) If you doctor asks you about the stim contiously, and tells you need it, ask yourself is he trying to push this on me or do I need it? Do you want a doctor to do this if he isn't interested in taking time to explain it to you?

    12) Research all you can before your final decision. Talk to people that has had success, and to people that have had minor and major problems with there stims. go to medtronics site and register for there free information and video.

    13) Ask your dcotr how many he has done? How many success patients he has, and how many with minor and serious problems with it?

    14) Call and discuss with your insurance company if the surgery will be covered?

    15) Make sure your doctors office gets pre approval before you have it done.

    16) Make sure that your programming is free of charge. (you may have to pay an office call.. mine are all at no charge even the visit)

    17) Make sure that you know exactly what will take place in the O.R. . For both procedures the stage trial, and the permenant implant.

    18) If the trial dose not give you any relief on your frequency and urgency, do not have the implant done. Even if your doctor tells you that the implant will work, even tho the stage didn't.. That is incorrect.

    19) Make sure that all your questions are answerd to your satisfaction.

    20) If you do not feel comfortable or if you feel pressured in having the stim done, do not do it. This is your body and your decision.

    I hope that you find this post helpful to you. If I think of anything else I will add it to this post..

    things I forgot to add last night.. it was late lol thanks to these girls sharp eyes they caugh it. Thank you girls

    21)Patricia1 added:
    *Should your leads move (like from a fall, bump, wreck so on) the outcome of a revision surgery is neccessary.

    **Also consider long term outlook with this procedure. When the battery life is up the whole unit will be replaced not just the battery.

    22) Katrina added:
    this is not a implant that you can just have put in and not have a doc monitor and so on. You will need to have a doctor still monitor it in you and so on...make sure your doctor plans to do so!!

    23) Asn added:
    I would add that you are not able to have some medical procedures, like MRI's and diathermy.

    Ads had a great responnse:
    my first IC doctor who started talking about InterStim before IC ever came out of his mouth. He wanted to try InterStim right after the hydro and no other treatment options had been tried.

    24) If a doctor tells you, you need the interstim, and has not given you meds to try to help you, seek a new doctor..

    25) Rule of thumb, you do not need to feel the stim for it to work.

    26) It dose not hurt to turn it off once in a while to give your stim a break, and prolong battery life.

    27) The average battey life for the stim is 7 years. so you will need to be prepared to have another surgey at that point.

    28) The stage trial is based on your doctors. Mine an IC specialest dose a trial for 14 days.

    29) When you are going to have the trial done it is done in a hospital, sedated, in twlight stage. Ask your doctor how this procdure is done.
    What you don't know is that they tape your butt cheeks open to be able to see respose from the stim.. embarssing.. yes!! would I do it again.. you bet.. the brusing will look worse then it feels.

    30) You will get antibotice after both surgries and pain meds. it is best that you get these before hand. Then there is no need to stop and have them filled on the way home.
    Last edited by tigger_gal; 10-28-2006, 05:59 PM. Reason: needed to add more to this
    'The will of God will never take you where the Grace of God will not protect you.'

  • #2
    Excellent post, Cindy. Anyone who is considering an interstim should read it.

    Donna
    Stay safe


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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.
    [3MG]

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

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    • #3
      Agreed! I love the list thanks Cindy!!! One thing I think I would add (sorry if I missed it) is that this is not a implant that you can just have put in and not have a doc monitor and so on. You will need to have a doctor still monitor it in you and so on...make sure your doctor plans to do so!!

      THANKS AGAIN CINDY!

      :woohoo: Good job!
      Faith, Hope, and Love,
      Katrina


      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

      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.
      or find me on facebook http://www.facebook.com/kat671?ref=profile
      Be the Miracle! & Pay it Forward!

      [email protected] please contact me...I am here to help!

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      • #4
        excellent post!!!!
        I would add that you are not able to have some medical procedures, like MRI's and diathermy.

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        • #5
          Great post!! I love seeing these. For those considering the InterStim they can be of GREAT help

          Would like to add a couple of things:

          *Should your leads move (like from a fall, bump, wreck so on) the outcome of a revision surgery is neccessary.

          **Also consider long term outlook with this procedure. When the battery life is up the whole unit will be replaced not just the battery.

          Also like Cindy said please check with your insurance company. For me when I lost my medical insurance and needed to have re-programmings done I would have to pay $50.00. And make sure they will cover them.....
          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

          Comment


          • #6
            Thank you

            Tigger gal,

            I appreciate your post and hope the new IC people read it. In 2000, Jill and the ICN saved me from my first IC doctor who started talking about InterStim before IC ever came out of his mouth. He wanted to try InterStim right after the hydro and no other treatment options had been tried. I will always be indebted to Jill for educating and empowering me! It is something I will never forget or be able to repay.

            ads

            [QUOTE=tigger_gal]When you are considering the interstim, you need to know all the luggage that comes with it.... What it will and will not do.... The good it can provide and the bad it can create.... here is a list That I think is important to read...
            ...11) If you doctor asks you about it contiously, and tells you need it, ask yourself is he trying to push this on me or do I need it? Do you want a doctor to do this if he isn't interested in taking time to explain it to you?...

            Comment


            • #7
              thank you ladies.. there was a lot more I thought about to add afer I went to bed... gee got figure.. I did add your replies on the thread.... and fixed my spelling errors..
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                My doctor has also been pushing for me to do the interstim. In fact on my last appointment he brought it up again and when I looked at him and said "I told you that would be a last option for me", he got up and walked out of the appointment. A couple of days ago I called him to change my script for catheters because the 14's were too big and irritating me when I do my instillations at home. He said No I won't give you smaller catheters. So here I go again in search of a doctor that is not just trying to make money off of me. My doctor wants nothing to do with me now that I told him aggressively that I won't do the interstim. I also told him that my main symptom is pain and I thought the interstim was more for frequency. He had no come back on that one. He just wants me to do it so he can make some big money. I think it's time us IC'ers did something drastic so the medical community will hear us. I just don't know what the heck to do. I'm worn out. I'm on my 6th or 7th urologist and if they can't make big money on you then they let you suffer. They should not have a license to practice medicine.

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                • #9
                  I know what you mean. My last uro (Dr. Ragi) was wonderful. She would give me enough meds with refills since I was pretty much pain management anyway. When Dr. Ragi moved and I had to go to her replacement (If you can call her that) she kept wanting to try new meds on me and then check back with her in a week. So there I am paying for meds that don't work (Dr. Ragi always gave me samples) and going back to pay yet another $40.00 co-pay. The new doctor that I am going to I keep telling myself he is just getting used to me and it will get better, but he too writes pain meds for 60 loratabs for every 8 to 10 hours. I take them during flares and at night like every 4 hours. Dr. Ragi always wrote me for enough to get me through a month and I hardly ever had to use the full amount, but I knew they were there if I was flaring. Ditropan, etc doesn't work for me. It makes me not being able to pee. I just want to sleep and not hurt! Coming every week after I have been through this song and dance is not going to change just cause he is seeing me every week. Now they want to do heparin instillations which I did one a couple of weeks ago. I was in the flare of my life. I was walking around my house like a caged animal! When I went to the doctor again my husband went with me and still told him that he believes that I need to follow through with the heparin since it seemed to work on many of his patients. Dr. Ragi KNOWS that the more you mess with my bladder the flares keep a coming!!! It's like the doctors don't want to listen to what our history is when people like us are definitely doing our research!!!

                  Comment


                  • #10
                    Intestim Info

                    I loved all the info everyone gave on the interstim therapy and what it may or may not do for me. I am to see Dr Caballero on Nov. 6 and I am supposed to give him my decision then. He hasnt tried to push anything on me but I know for a fact that he does not treat long term pain mgmt and when he stops helping me there I will have nobody. I know that pain clinics are set up to help people like us in this situation but I am so scared. I work full time in the local ER as a nurse and I see how others bad mouth people who go to these clinics( I dont, I still believe in helping someone who is in pain) If I have to go that far it may even cost me my job or career. My employers are already thinking I have a problem with meds even though I dont get them very often. I do have a problems though, I have IC, fibromyalgia and IBS on top of being a new gastric bypass patient. I pray to see some light at the end of the tunnel soon.
                    Paula

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                    • #11
                      Hey Tracey,
                      I do home instillations of heparin, bicarbonate, and lidocaine. Although my catheters kill me when I do them ( too big ) I have found that after I do them I go to bed with an ice pack between my legs and relax for about an hour. This helps me so much with the pain etc from the catheter. I know the first time I did an instillation at home I was in the worst pain of my life. I just about went to the emergency room it was so bad. I swore never to do another one, but it has gotten better.
                      Karen

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                      • #12
                        Mine's not working!

                        Hi, I'm new to the site, but wanted to add that I got interstim this spring and they told me 70% of the time, the pain is better for patients. Mine hasn't even touched the pain, so the surgery was $31,000 and it doesn't even work. What do you think they'll do next? I have another consult tomorrow. THey've already reprogrammed several times and have done other things. I've exhausted every treatment option available to me. Does anyone know about how botox into the bladder works?
                        Last edited by ICNDonna; 10-17-2006, 05:34 PM. Reason: Removed advertising.

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                        • #13
                          This is what upsets me with doctors telling patients, who's main problems are with pain, is that the InterStim will help them with their pain. I have had 2 InterStim's now, got my first one in 2001 and neither of them have ever helped with the type of bladder and plevic pain I have. Of course the InterStim is not FDA approved for IC, but it is mainly used for the urgency and frequency associated with IC. I know some may have help with the urgency pain they feel, but for most people it does not help with the bulk of their IC pain. Even those that have had GREAT experience's with InterStim and help with their IC, still have daily issues with pain and still take pain meds and so forth.

                          My suggestion is (and this only my opinion) if your main problem is with pain and the InterStim has not worked yet even with re-programmings, it is not gonna work for your pain. I know how upsetting it can be, I have had two surgeries now and neither one has turned out well, and I am fixing to have to conisder having the 2nd on removed. Now if it is helping with your urgency and frequency but not the pain, this can be normal. But if pain is your major complaint and it is not helping cosider having it removed. But again this is only my opinion and I am sorry you were told that it helps 70% of patients with pain. It does help certain types of pain, but not all or most pain associated with IC.
                          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

                          Comment


                          • #14
                            Wow, what an awesome thread this is!!! This should be a must-read for all those considering Interstim! Or any neuromodulation, really!

                            Blessings,
                            Lori

                            Comment


                            • #15
                              Freckles, I went to the doctor today and I was talking to him about self cathing. He said that my uretha is very small and he didn't recommend that. I don't know if he talked to my former doctor or not, but he didn't push the heparin thing this time. I just have it in my head after all those dmso treatments, waking up from surgery and begging them to get that cath out. I have been reading up on it. The other issue is that a different doctor does the instills so there is another co-pay... and since he doesn't recommend me self cathing I would have to pay a co-pay for that visit as well. It's all a racket!!! (that's my mom's saying)

                              The doctor have me refills on my loratab, valium supp, b&O supp and Lidocaine gel jets. I like the jets since it kind of numbs my urethea after I have one of those bladder empty huge painful spasms.

                              Thanks for the info!

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