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  • #16
    Here is my list of questions concerning the InterStim:
    (It is a growing list as I think of additional ? I will post them)

    What is your experience with this procedure? How many have you done? What are the complications you run into most often? How many pregnancies have you followed after the implant? What is your philosophy on when to do it and remove it?

    What are the most frequent problems?

    How long will I need to restrict my activities? What activities should I avoid after each stage?

    Will I be able to strength train and do arobic exercise?

    What type tests do I need to know about? Can I have an ultrasound?

    How common is it to have to do revissions? What is the extent of most revisions?

    How will pregnancy effect the leads and implant? What precautions do I need to take when I get ready to start trying and then when I get pregnant?

    Will you be suturing my lead wires to my spine? Why or Why not?

    Some people have reported that their implant stim wasn't as effective as the trial. How often does this happen? What can be done to increase the effectiveness?

    In the worst case and best case scenerio how long will recovery take? What will be the most difficult part of recovery? Will their be swelling and if so where and how long?

    How often have you had to remove the interstim? In those cases did the patient request this? Of those removed, how many had another generator or lead implanted to replace the old one?

    What can I do to increase the benefits possible with the device?

    What can I do to have the least amount of recovery time with the maximum benefit.

    What happens if I experience additional pain that doesn't go away after the incisions heal? What are my options at that point and what would you suggest for treatment?

    A medronic phone councelor mentioned that some people have difficulty getting the leads removed because of the scar tissue that grows around it. In fact, she said that some dr. believe that it would be more dangerous to take it out than to leave it in. What has your experience been with this issue?

    I have been told to avoid hot tubs over 101 degrees. What other things do I need to avoid or be careful with.

    I hope that this list will be helpful for those of you contemplating the InterStim. I am going through with this procedure but I'm informed of all the possible risks and I will continue to gather information from many resources. My rep says that I have asked questions that 99% of patients never think of. I feel that being proactive about our treatment is essential in getting good care. If a dr. is threatened by your questions run as far as you can because a good care giver will encourage patients to inquire.

    Rachel

    Comment


    • #17
      Rachel!!! Love these. If you don't mind, I'm going to reprint these in our newsletter. Awesome questions all around!

      Jill
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

      Looking for books, magazines & reports on IC? Please visit the ICN Shop at: http://www.icnsales.com: Your ICN subscription & purchases in our shop support these message boards, chats and special events. BECOME AN ICN ANGEL TODAY!

      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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      • #18
        I agree, great questions!
        Jolene

        "Life is what happens when you are making other plans" John Lennon

        IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

        Information for Patients can be found here.
        http://www.ic-network.com/patientlinks.html


        Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




        Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

        "IC Angel 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."

        Comment


        • #19
          Great questions Rachel!!! :thumbsup:

          I agree with your advice about running the other direction if a doctor seems threatened by questions. That tells me he is either unsure of his skills or has something to hide and I want no part of that, either way.
          :dogrun:
          I always come in with a list of questions at my 1st appointment with a new health care provider. I decide whether I will be coming back based mostly on how they react to the questions. At my first appointment with my URO, he scooted his chair closer to mine when I brought out the list and he read them with me and even waited for me to jot down notes before going to the next one. I knew then that he was the right one!! I always leave with all my questions answered!! And that is how every dotor should be. IC is a tough disease to understand. Good grief, we need to ask a million questions just to figure out what the heck we can eat. And that's just the tip of the iceberg!!

          Keep us informed about your progess Rachel. I expect we will all learn a lot about Interstim from you. I will say prayers that all goes well and you have a very good experience. Good Luck!!



          HUGS,
          Audrey Rose

          PROUD ICN ANGEL SUBSCRIBER!!

          Comment


          • #20
            Well I did go to my pre-opp appt. with my list of questions. My fiance felt that it was a bit over the top but I explained that they were just a guide for me and I had already found answers to several listed. I didn't go down the list as an interview although if I had it would have been perfectly fine. My dr. is known throughout the hospital for his caring and listening skills with his patients. It's always so interesting to hear what other professionals like nurses and orderlies have to say about my dr. that I love so much.

            I feel fortunate to have found him after only 9 months of searching. I trust him completely but I will continue to ask questions as I feel I need to. His nurse is also always there to listen and help me out as well. As a matter of fact I was in their office this morning very upset because my fiance was bothered and angry that I felt the need to call the on call nurse over the weekend. He waited until we were out the door before he unleashed this on me and it hit me really hard. He is unlike many men and has been extremely supportive along the way but I think he's just wearing from the stress of my illness while we get ready for our wedding. Needless to say he took me to the dr. and they agread that I definitely needed to be seen so I felt validated. I was still and emotional wreck and the nurse could tell that I had been crying. I waited to Brian was away before I told her what he was upset about. She told me I did the right thing and it's always better to be safe than sorry.

            This process has been an emotional journey for me last year with the diagnosis and the addition of new drugs and now as I adjust to the InterStim implant. I will continue educating myself about this disease and the possible treatments for it. I will never appolagize for inquiring about something happening to MY body. Anyway my fiance later appologized and admitted that he's been stressed lately. I know that I probably overreacted but for God sakes cut me some slack because I have a 3 inch gash in my butt!

            I had my stage 2 implant on Thurs last week and am doing very well despite my concern of infection (which is why I called the nurse) The huge welp like swelling went down today but it has been draining like crazy so I'm having to change the bandage every hour or so to keep it clean. Brian, my fiance, is doing this for me which is helpfull. I feel great except for the sting and pressure at the incision site that is subsiding each day. My pelvic pain has been greatly reduced and if I do as well with the implant as I did with the trial I will be able to go off all pain meds!! I'm hoping that my recovery goes smoothly because my wedding dress has to be altered next week and I'm on a strict time line leading up to June 26th. My family has been very helpful so I'm not stressing about the details yet. As long as my miracle box keeps on ticking I'll be o.k. I was very releived to hear my dr. say that he only has to do revisions about 10% of the time because he places the leads and confirms the stim with the patient half awake. I never felt anything except a little zap the first time and the second time not at all. I'm nauseas but that's not uncommon for me. I will be going back to work and grad class tomorrow at which time I will be teaching in front of my fellow classmates and prof. I'm praying that this all goes smoothly and I'm promising to take it easy throughout the day.

            I finally got the nerve to turn my box up a notch yesterday and it worked! I just needed to know that I could control it in case something was wrong that needed to be fixed. Thank you all so much for your support! Sometimes even our most understanding loved ones don't get it like you. Take Care!!

            Jill, yes you may certainly use the list of questions. I will be passing it out to our support group as well.

            Thanks,
            Rachel

            Comment


            • #21
              It has been 6 months since I have had the device removed and I am still having involentary jerking movements in my arms and my legs.....I can't imagine what damage is going to show itself down the road
              teri
              ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
              Courage does not always roar. Sometimes, it is the quiet voice at the end of the day saying, "I will try again tomorrow".

              Comment


              • #22
                Originally posted by Teri
                It has been 6 months since I have had the device removed and I am still having involentary jerking movements in my arms and my legs.....I can't imagine what damage is going to show itself down the road
                Do any of you who have had the interstim have a history of adhesions? I am curious what role adhesions could play when having the interstim (surgically) implanted..

                Also, how new of a treatment option is interstim? I had read it is not yet approved by the fda for IC and am wondering if this is still the case?

                Thank you to all for sharing your experience with the interstim -- both positive and negative. I printed out the questionare and am saving it. Very excellent list of important issues to consider.

                Comment


                • #23
                  Christine,
                  I have not had the Interstim, but have researched it and know what I have read here on the boards.

                  From my understanding, Interstim has been around for awhile, I am thinking maybe some where around mid 90's, but I am not sure on that, but the last I heard there has been no 5 year study released yet. It is not approved for IC, it is approved for frequency. It is not approved for pain. It is suppose to be a last resort treatment when all other more conventional treatments have been tried and failed.
                  Jolene

                  "Life is what happens when you are making other plans" John Lennon

                  IC diet cheat sheet....http://www.ic-network.com/diet/dietcheatsheet.html

                  Information for Patients can be found here.
                  http://www.ic-network.com/patientlinks.html


                  Jen's tips for great IC sex..http://www.ic-network.com/forum/showthread.php?t=22522&highlight=jens+tips[/url]




                  Newbie Angel...I will be happy to answer any questions or just listen. Email me at [email protected]

                  "IC Angel 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."

                  Comment


                  • #24
                    Jolene is correct. The reports just aren't out there for review. I absolutely agree that this should be considered only when all other treatment options have failed.

                    Donna
                    Stay safe


                    Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                    Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                    Have you checked the ICN Shop?
                    Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                    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.
                    [3MG]

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

                    Comment


                    • #25
                      Hi Christine;

                      I have had the InterStim Implant for five years now and it was the very last resort of doing every possible meds and treatments available..

                      It is something you should read all the information on this procedure I suggest that you find a doctor with lots of experiences and ask to be able to get in contact with one of patients and hear what they had to say about the procedure and the doctor doing it..

                      I did not have problems with adhesions at all..

                      I only had problems with the InterStim Implant the second year that the lead wire crack in half at the center of the spinal core and later learn that the lead wire was a faulty lead wire.

                      You can read about it on the web site at www.interstim.com
                      It is not for pain and I was told right up front that is would not help the pain but in my case it helped my pain as I was a lot different in many cases we are all so different and it may help one and may not help another this is like any kind of procedure that you try...

                      I know a lady that had her InterStim Implant done in 1982 and doing just great with her it has been around for a while..
                      They are updating the InterStim Implant in the way they do the procedure then the way I had my done five years ago..

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

                      Comment


                      • #26
                        Hi. This is my first time posting. I'm having a terrible time with my stim implant.
                        Last year I had it implanted and things were fine. After a few months I stopped feeling the pulsating. I went to the doctor and we discovered that the lead had fallen and was no longer working. This had only ever happened once before to someone in Japan, or says my uro.
                        In January I went in and he fooled around with it saying that it probably wouldn't work, but he'd give it a try. Well, it didn't work. It's even worse then before and now we have to start all over with him taking out the old one and putting in the new one. The pain that I'm in is excruciating at the incision point, and it's becoming infected a lot. Which scares me. It's definitely a defective product, and am actually considering taking legal actions, because of how much pain and money this is costing me. But I'm not sure if I should or not. I don't know if I should bother.
                        Any suggestions would be much appreciated. I feel for all of you that have had bad experiences. It's good to know I'm not alone.
                        Theresa

                        Comment


                        • #27
                          Originally posted by TheresaD
                          Hi. This is my first time posting. I'm having a terrible time with my stim implant.
                          Last year I had it implanted and things were fine. After a few months I stopped feeling the pulsating. I went to the doctor and we discovered that the lead had fallen and was no longer working. This had only ever happened once before to someone in Japan, or says my uro.
                          In January I went in and he fooled around with it saying that it probably wouldn't work, but he'd give it a try. Well, it didn't work. It's even worse then before and now we have to start all over with him taking out the old one and putting in the new one. The pain that I'm in is excruciating at the incision point, and it's becoming infected a lot. Which scares me. It's definitely a defective product, and am actually considering taking legal actions, because of how much pain and money this is costing me. But I'm not sure if I should or not. I don't know if I should bother.
                          Any suggestions would be much appreciated. I feel for all of you that have had bad experiences. It's good to know I'm not alone.
                          Theresa
                          Theresa,

                          My heart goes out to you as I know how painful IC can be. Have you considered not having a new Interstim implanted? I would seriously discuss this with your doctor, especially if you are not benefiting from the Interstim. I know when I had the DMSO installations, I ended up in worst pain than I was in prior to the installations. I recently read an article wherein researchers are questioning if DMSO can/does cause permanent nerve damage in some patients. This was over a year ago and at that point I decided against any further invasive treatments. Also, I elimanated many of the IC medications I was taking. I find the pryidium works and a low dose antibiotic occassionaly. I manage the chronic pain with a pm doctor and medications.

                          Thank you to all who replied and it is good to know we are not alone...

                          Comment


                          • #28
                            For Theresa

                            It's been my perception that one of the biggest problems with the interstim is that information may not be being shared with doctors by the company. I do know that I have read many reports from people on these boards, who have had their leads either move or break and also reports of people who have had theirs removed due to ongoing problems. Your doctor has probably not heard about these people.

                            My suggestion would be to seek a second opinion before going for a replacement.

                            Warm encouraging thoughts,
                            Donna
                            Stay safe


                            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
                            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

                            Have you checked the ICN Shop?
                            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

                            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.
                            [3MG]

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

                            Comment


                            • #29
                              Theresa, I'm so sorry to hear about all you've been through. I'm glad you've posted, though--this community will give you lots of advice, support, and encouragement. Best wishes, little bear

                              Comment


                              • #30
                                Discomfort - sights of incision

                                I had my permanent implant done 1/4/04. I had alot of pain with this surger, I couldn't lay in a position that would be comfortable. Found out after 5 days that the medtronics rep forgot to turn on my device during surgery. Relief wise for my symptoms: I was going to the restroom 40-60times per day, I now go 5-7 times a day. I was waking up every hour at night to use the restroom and now i go 8 hours with no waking up. I still have a bad urge when I do need to go, but luckily I don't go near as much. It has been a real success for me. The only thing that I would suggest to people thinking about going thru this surgery, is to make sure if your needing to lose weight, that you do it BEFORE your surgery as I gained weight right before the staged implant and right after. So, when they placed the permanent, I was alot heavier. Now I have lost 30lbs and I think the box is lower and causing some discomfort and I can also feel the box in its entirety and will even protrude the skin in certain positions. I'm not sure if that's normal or not. I do have a question. Is it ok to go thru the metal detectors at the airport or a court house? I have my card and wasn't sure if i should just be showing that.

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