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  • what exactly is interstim?

    one of the urologists at my uro's clinic sent me a letter about interstim. i can't attend his little "workshop" that he's having. i just want to know what it is and how does it help? wouldn't it just cause more pain?

    any info is appreciated.
    holly 35
    IC, endometriosis, graves, chronic uterine infection
    no kids, just me and my man (and some furry things that beg for food a lot)
    "if the Lord has set you free, be free indeed"

    IC dx 2003/mysteriously developed while on depot lupron to treat endometriosis
    treatments tried so far:
    elmiron, elavil, pyridium, urelle, heparin instills, doxycycline regimen (most successful, but not completely), IC diet

  • #2
    An interstim is a battery powered device, which is implanted into the buttocks and connected to wires attached to nerves in the spine. The electrical stimulation sometimes helps IC patients with urgency and frequency.

    Some people find it very successful; others report severe side effects.

    Donna
    Stay safe

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    • #3
      what is interstim

      Hi there,
      The interstim is designed to help with urgency and frequency not pain www.interstim.com is a great site, there are all sorts of pages. There number is there and there also is a page to order (free) information on the interstim (or you can call)
      I recieved tons of helpful info and a vcr tape of the procdure.
      please read this... this is from my uro..
      http://www.medreviews.com/pdfs/artic...suppl1_s36.pdf
      any one considering the interstim should do lots of research
      brat
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #4
        Hi Holly,
        I saw your post on the Southwestern States. Where and when is this meeting suppose to be? Do you know who is putting it on? I am always interested in learning and if I would be able to go I might think about it. My Dr. is also in that group. I know they have at least 4 or 5 offices that I know about in the metroplex. It is a large urology practice.

        You do need to do to your research as has been suggested. There have been very happy patients that have had successes and people who are unhappy with the results and have more problems now due to the Interstim.

        Here is another website to check out about medical implants. This is a shortened version of it and the full version is in the March 2004 issue of Good Housekeeping.
        http://magazines.ivillage.com/goodho...615788,00.html

        Check out the medreviews that Cindy told you about,check out the medronics website, and any other thing you can find.

        The FDA has said that Interstim should not be considered until a patient has tried and failed the other conservative treatments. Oral meds, installs etc.

        Bottom line for anyone considering this or any other treatment, this is your body. You need to know the pros and cons of the treatment. Especially with Interstim you have to know that you can live with the consequences if you are one of the ones who has problems with the stim. This impacts you and your family. I do feel this is an option for some people. Just know that it is not approved for IC or pain. It is approved for frequency.

        I support you in anything you decide. Just do your homework and ask questions until you feel comfortable if this is something you are considering.
        Last edited by dyno; 03-30-2004, 05:26 AM.
        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


        • #5
          I have tried the old interstim trial where the wires are placed through a needle with no incision and then connected to an external box. I was very skeptical but I had tried everything from meds to nerve blocks and instilations etc. My dr. is also in Fort Worth and is considered an expert urogynocologist that specializes in improving the lives of I.C. patients. He believes in providing care that is the least invasive possible way to get the quality of life. He believed that I wouldn't need a permanent implant because I have severe flares but they go away after several months usually. By the time I had the trial done I was on morphine from pain and self-cathing all the time from retention. I consented to the procedure in the hopes that it would eliminate my retention and ease the spasms. It completely took the retention away and I was able to go on my own as well as having the bonus of pain relief. My dr. informed me that this is not for pain but some patients report pain relief especially if the pain is caused by spasms in the pelvic area as mine is.

          Unfortunately I have gone down hill after the trial was removed a week ago and I'm back to self-cathing and taking heavy doses of morphine for the pain. Because I had good results from the trial and such a quick regression in symptoms after it was removed my dr. feels that it is an option for me. I know that we tried everything possible before considering this option so I think it's the right decision for me. My dr. went so far as to say that he would do a trial once a year for me if it worked as a temp. measure to stop the severety of my flare. He himself agreed that this is a last resort option that is not for everyone.

          By doing a trial that is not invasive you get a chance to see how your body reacts to the stimulation and whether or not it is helpful for you. I wore the wires for 3 1/2 weeks taped to my back and then attached it to a box worn on the belt that I controlled. Many dr. do the stage trial now which is where the wires are implanted inside the body and require a small incision. The wire has a type of achor on it that attaches to the tissue inside. This is a good option for people who know they will be getting the permanent implant. I will be doing this as the 1st stage in my permanent implant so we can ensure the wires are stimulating the correct places. I'm glad I did the old trial first though because it didn't require anything more than a few needle pricks to the skin where the wires inserted. My dr. took them out in the office which was actually the most difficult part. It hurt for a minute when he pulled on the wires to get them out. It's kind of like pulling a tooth, it hurts like **$# for a second and then it goes away. The stage trial takes going under anethesia again in surgery in order to remove the wires.

          I would love to know about the lecture you described since I'm from the DFW area. You can email me at [email protected]
          to give me the specifics and your dr. name.

          I hope this has all been helpful for you. As Cindy stated the medtronic site is a good place for into too. You can even see pictures of what the actual implant and wires look like.

          Rachel

          Comment


          • #6
            Rachel,
            I am so sorry that the temp. trial didn't work. I was so hoping that would be your answer. I know the Dr. you go to and he has a very good reputation. I know you have been through the ringer. I hope if you go ahead with the permanant one that you will get the great results that you had with the trial.

            I was also interested in hearing about that lecture. I will give my Dr.s office a call here and see what I can find out.
            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


            • #7
              Jolene,

              I know that you had a friend that had problems with her interstim. Was she able to find a dr. to remove it for her? If so did she still have problems after that? I've heard of several people that haven't been able to get their dr. to remove them when something's wrong. I want as much information as possible before I have this done so I'm prepared for anything that might happen. Most of the horror stories I've heard have been from a friend of a patient so I haven't actually chatted with many that have personally had severe reations. Please let me know some specifics about your friend so I can take my latest questions to my pre-op appointment.

              I've talked to both my dr. and his nurse practitioner about the possibiltiy of having problems and what could be done in that event. They both explained that this is a reversible procedure and if it makes me worse than they will take it out. I know that he has done hundreds of implants and has at times had to take them out when it caused complications. I just told him he couldn't move or leave me anytime soon because this procedure requires maintenence over time and he's the only one I trust to do it.

              Thanks for any information you have.

              Rachel

              Comment


              • #8
                Rachel,
                My friend did have hers removed and she still has problems. She is in a lot of pain most of the time. I will tell you another person to visit with is Jill, the founder of this site. She knows a lot, hears from a lot of patients and is a very nice person to visit with. You can reach her by calling the number listed here.
                ICN Administrative Office
                4983 Sonoma Highway, Suite L
                Santa Rosa, CALIFORNIA USA 95409
                Voice: 707.538.9442 Fax: 707.538.9444

                This is a big decision for you I know and if you would go into the failure board and expand it out as far as it will go length wise, maybe you can find some emails and I see for now our PM system is working again and make some contact privately with some of these people so you do know what you are dealing with.

                I have made 3 phone calls and am waiting to hear back about that informational meeting and when I get the details I will come back and post about it.

                You are wise to check this all out, remember we are all here for you no matter what you decide and remember Jill, I have talked to her several times and she is a peach.
                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


                • #9
                  I made some calls yesterday and never heard back about the informational meeting. The gal I talked to at the Las Colinas Hospital, I was referred there by the UANT group in Las Colinas, told me she didn't know anything about it and was waiting for the Medtronics rep to call her back. So I think that answered one of my questions, Medtronics is the one doing the meeting. She said they do them sometimes. It may end up not being at that hospital though and that is why she didn't know about it. So if I hear anything back today, I will post the info I find out. I could have maybe went today but won't be able to go tomorrow. I would just like to see how a rep for the company presents this information.
                  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


                  • #10
                    Jolene,

                    Thanks for looking into that and letting us know. I'm also interested to see how a rep would present info to a group of people. I have my reps cell number so I can call him as I think of questions. His information in no way takes the place of my dr. expert oppinion so I discuss every concern with my dr. and his staff as well. I have spent a lot of time talking to my rep and he is always upfront about risks and possible complications but I'm also very diligent at asking informed questions. I am assertive and address the dr. and rep as an informed patient. My fiance says that it's cool to watch me dialogue with the dr. and hold my own in terms of inquiry and informed responses. The idea of using the trial stim as a deliberately temporary device to get through a severe flare was the reccomendation of my dr. and I'm not sure that the rep ever really understood that to be our plan.

                    Unfortunately I have a tremendous amount on my plate right now so there is no way that I can attend a session in the next week. I stayed home yesterday and today to rest. In the past week I have learned that my position is being cut in my district so I'm currently looking for a job both in my district and in other districts as well. While I know that I have a job, I must make sure that I get to choose where I'm placed rather than leave it to chance that the district will put me in a place that I want. In addition to that, I'm also dealing with tremendous pain and retention, while I catch up in my grad class, try to make it to work, and prepare for my wedding in June. I've spent the last few days delegating people for different wedding tasks in case my implant recovery makes it difficult to carry out some of the last bits of planning. I've got a great support system routing for me and helping out along the way. I've had to let go of some things that didn't rate high on my priority list.

                    As much as I would love to hear a talk on the interstim I just can't fit it in right now. I've been asked to come for an interview this afternoon but I've got a dr. appointment and I just don't think I can physically do it today. I hope that I'm given another date.

                    Please let me know if you go to the discussion. Maybe you could post the general highlights and your overall oppinion. Please keep my in your prayers as I am very overwhelmed at this time.

                    Thanks,
                    Rachel

                    Comment


                    • #11
                      Hey, I got my Interstim implant on the 19th and I took off my pad in my panties. so far no leaking with urge. I have 6 more weeks of doing nothing. The doctors want scar tissue to develope around the wires. I had a kink in a wire on my tailbone, the doctor thought that may have been why I was getting the surges, so he opened that up again and took the kink out. All is fine so far, I just have to keep telling myself not to lean over, reach, squat, or lift anything for the next 6 weeks. The pain med they gave me this time still gave me the itches. I am uncomfortable sitting in my chair so I just lay around. LOL I didnt know the device to change the settings would be so big. It is bigger than my cell phone and I have no room in my purse for it. I wld like to go to the post office and try it out lol...maybe when I am all healed Ill see if I set off any alarms.

                      Comment


                      • #12
                        Re: what exactly is interstim?

                        Hello~
                        I am debating this procedure, can you share pro's and con's? Has daily life changed? I leak urine often and have constant urges. I am afraid however, that the implant my cause more harm with the other neighboring areas. Some patients on the blog reported jolts/shocks during intercourse. Has it been painful. Thanks for your help,

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