Announcement

Collapse
No announcement yet.

Urologist told me Interstim or Bladder Removal...I have questions please...

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Urologist told me Interstim or Bladder Removal...I have questions please...

    Hi, everybody, I'm trying to decide between interstim and bladder removal.

    Right now I am learning everything I can about interstim. I have gone to the interstim (medtronics) website to ask questions, and am awaiting some answers.

    I would like to talk about what impressions I am getting so far, reading the posts, and ask if you all could tell me if I'm on target or missing the mark in my impressions from what you can see or what your experience has been.

    So far I think what I am hearing is, this is good for urgency/frequency but not pain, but does lessen the urgency pain (and that's how you get to have less frequent voids.)

    I am hearing that it is a major, major operation with at least two parts, and often more because of replacing lead wires, adding new wires, reprogramming, etc. I am hearing there is a signficant risk of nerve damage, possible risk of infection, etc.

    I am hearing that it's pretty easy to break the lead wires or mess up the device if you exercise very much (no sit-ups, no weight lifting, no jogging?) (can you still sleep on your back though? Or sit in chairs comfortably?)

    The biggest concern I have is that I seem to be hearing, over and over, that this device fails after 1 or 2 or 3 years. That it works for awhile (64% completely better or at least 50% better) and then you reprogram it, add more wires, stand on your head and jump through hoops but the thing just stops working. My impression is that it stops working at that time for ALL patients. (Has anyone ever had theirs work beyond 3 years?)

    The data at medtronics site doesn't help me with this because they only followed their patients 17 months. So there is no way for me to know what happened to those patients at 18 months, 24 months, 36 months etc.

    Please, if anyone could give me any feedback, steer me in the right direction if I am veering off path, I would appreciate it.

    Thank you,

    Blessings, Lori
    Last edited by ICLori; 07-22-2004, 10:19 AM. Reason: left out a word

  • #2
    lori,
    you can send me a list of your questions or post them I will be glad to help you.. I might give the stage trail interstim a try b4 bladder removal.. but remember its not for pain... [email protected]
    I can run.. sometimes lol I have fibro so mostly not, you can resume you normal activities after your implant.. about 6 weeks.. I have fell on my rump and was fine, never had any major problems with my interstim. I sleep on my back and sit just fine, not to mention drive
    Brat
    'The will of God will never take you where the Grace of God will not protect you.'

    Comment


    • #3
      If I can help you with this discision in any way let me know. I have had my colon removed and have a nerve inplant for epilepsy in.....neither are exactly what you are looking into but they are similar so let me know if you want to ask me any questions. I pray that you are able to choose what is best for you.

      God Bless
      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!

      Comment


      • #4
        Before I consented to the Interstim I spoke with a patient who'd had hers for over 10 years (she was a part of the trial that got it FDA approved). She'd had to have the lead wires replaced when they finally fatigued, and the stimulator replaced when the battery ran out. I'd call that normal maintenance for a medical device over that period of time. It's too soon to say how long mine will last, but I think there are some that do quite a bit better than what you've heard.
        IC & fibromyalgia since ~'77. Osteoarthritis since ~'88. Idiopathic Thrombocytopenia Purpura (autoimmune blood disease) since '96. IBS for who knows how long. Interstim implant 2/04, revised 6/06, replaced 11/12 & again in 9/17. Antibodies to thyroid since at least '92 (finally diagnosed & treated 1/06). Asthma & vocal cord dysfunction 12/06. Hypoglycemia '07. Perimenopausal at 37, menopause at 45. Pituitary & adrenal failure. Osteopenia. Grade 3 sacral fracture by S3-S4 at age 12, healed 14mm out of place.

        Comment


        • #5
          Thank you all so much for your replies, this helps me so much in making my decision and I appreciate you taking the time to help me.

          This is kind of a scary procedure to go into, there are real risks, and so I am trying to learn everything I can before I consent to it, so that I can be prepared for possible complications and also just knowing what I might expect in general.

          Blessings, Lori

          Comment


          • #6
            P.S. Part of what makes the idea of interstim appealing to me (IF it works and keeps working, which is naturally a very big "if") is that I think maybe if my urgency/frequency were under control, I might not need pain meds.

            It's very hard for me to separate urgency/frequency from pain. It's hard for me to say exactly which part of the whole trio is causing me the most misery and affecting my life so badly. So I'm thinking, it is possible that if I just get urgency/frequency under control, that might be enough so that I could go off pain meds entirely, I don't know. It would be nice if I could do that.

            And Interstim is usually more easily reversible than bladder removal is, at least. Although if I get nerve damage or injuries during the implant or so forth, that's not reversible as far as I know. But I don't really know what the odds are of that happening. I feel like there isn't a really big data base for me to look at. There's the medtronics site, but I can't help but wonder if since they make the device, they put a positive spin on things. And then there is the anecdotal evidence I hear on this site, which is very helpful to me but even with all of that I don't feel I have a good handle on exactly what percentage of patients have which complications and what percentage of patients have good relief (at least 50% better) for longer than a couple of years.

            Whew, this one is a tough decision. I was thinking if it were cancer, it would almost be an easier decision, because I'd just say "yup remove my bladder, that's a no-brainer" but this decision isn't like that. I wonder if, after I make a decision, I will end up kicking myself down the road for it.

            Blessings, Lori

            Comment


            • #7
              One thing that's always okay is to see another urologist for a second opinion before making your decision. Since you're having concerns, I actually think that might be a very good idea. There may be some treatments out there that you haven't tried yet.

              Sending warm hugs,
              Donna
              Stay safe

              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


              • #8
                Thank you so much, Donna. I am going to see a urogyn on 16 August, and I am working with the pain management team and we are exploring TENS, Neurontin (just tried that one and got horrible bladder pain so that is out), percutaneous nerve stimulation, VIOXX, and I don't know if the docs will go for this one but I got a phone number for a compounding pharmacy so if the docs say "yes" I can pay out of pocket and try some of these meds (Elavil for instance) without fillers/dyes and see if it was the medicine itself causing me more pain or the fillers/dyes.

                So I am really trying hard to think of anything that helps. I am taking the algonot 5 in one in the hopes that it will help. I got one bottle, and they will be sending me the two more bottles I ordered when the factory problem is over with/supply problem. They said they could only send one bottle for now and would have to send me the two other bottles when they could. I hope it's soon because I think in another couple of weeks I will have used up this first bottle. In fact I think I will contact them and try to see what is going on with that.

                Also I am going to ask my doctors about alpha blockers, lumbar sympathetic blocks, etc. in the hopes that there is some relief for me somehow.

                Blessings, Lori

                Comment


                • #9
                  One question I do have, though is...if I am getting good results from staying on pain meds, without too many side effects, wouldn't it make sense to just stay on the pain meds and not do this surgery? Because there is surely a chance that even with a successful interstim, I might still need the pain meds.

                  Percocet already decreases my frequency to half or less of what it was without pain meds, and increases my capacity by double or a little more. So Percocet is doing for me what Interstim does for other people, when the Interstim is a success.

                  Since I'm doing well on pain meds, would it make sense really to take a chance at this time on the Interstim? It seems like there would be less risks with the pain medications, which are fairly safe medicines actually I am learning.

                  What do you guys all think? If I am doing well on pain meds, does it make sense to take a chance on Interstim?

                  Blessings, Lori

                  Comment


                  • #10
                    My VNS implant did cause odd side affects and put me through some pain that slowly got all better after it was turned off. Other doctors believe different programming could have prevented those problems. I suspect that if Instirm works for you ...you would like it more than meds everyday.....and the way to make sure things go well is to have the best doctor available for you. Meds on the other hand work pretty much the same no matter who prescibes them....I know the best doc that exsists isn't usually available/affordable for me. One other problem an implant causes is that when it causes problems ER has little ability to help you....if you can't get a hold of your doc you are stuck....but if you plan ahead that is a lot less of a problem.

                    I know that my inplant for my epilepsy brought me off of one med and lowered doses of one other.....Which improved energy. Side affects of meds like tiredness we get so used to ....but when there gone...yippee!

                    I don't know if that helps you at all but it is how I look at things now when I decide weather to turn my inplant back on and start over with my better doc.....wait for later, or continue on my high dose multi meds.

                    If I can help you with this anymore let me know.

                    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!

                    Comment


                    • #11
                      Please be sure to as Donna said, get a second opinion and do a lot of research from reliable sources first. If pain is your primary complaint, interstim is likely not the answer. If successful, it is mainly to control frequency/urgency...ie: the urge to go. In my case, my pain is 24/7 severe regardless of any other symptoms so in my own case, not an option. I've not heard of too many who have had total PAIN relief with interstim. Please be your own best advocate and do plenty of research and seek second opinions, etc.

                      Comment


                      • #12
                        If you are doing well on pain meds, STICK TO IT
                        Do you have good bladder capacity Lori? I have a friend who has only 2oz capacity and it did not work for her, she had her's removed (as did I).

                        Even tho I am not a huge fan of the device, I would definately try it before having my bladder removed. There have been some studies done as to the sucess rate of the device but I don't think that the dr's are using ALL of their patients in these studies. It's like anything else, they tell you what they want you to hear.

                        I had huge sucess with my original one for a few months, had to have a revision, went thru 2 years of hell and had it romoved. I have decided that since I do have good bladder capacity I will live with the disease. I've had IC since I was a child so for me, peeing every 20 minutes has become a habit I've lived with for 53 years and I will keep on livin' with it~
                        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


                        • #13
                          Hi, everybody, I think I might end up trying the Interstim because pain meds apparently do not work for me. Percocet irritated the heck out of my bladder - I had less pain when I went off than when I was on them - and I have that problem with nearly every med, whether prescription or OTC, I take. It's awful not to be able to take even pain meds without the pain actually getting worse instead of better. So I am off pain meds now and do not intend to ever go back on them, unless my bladder is removed, as pain meds cause me to flare terribly.

                          So, for me...I'm going to try a TENS unit, then percutaneous nerve stimulation (non-invasive) and then if those don't work, probably Interstim, then if that doesn't work, bladder removal. Looks like the way I will have to go....thanks for replies everybody...

                          Blessings, Lori

                          Comment


                          • #14
                            Lori,
                            Here are a couple of things to consider.
                            1) Acetominephen(spell?) seems to make me pee more. Percocet has oxycodone and acete.. Do you know how acete... affects you? Would your doctor prescribe just oxycodone? This is what I take.
                            2) I have learned that I have a pudendal nerve problem that feels like IC and it seemed like IC was worse but maybe it was the PN. Nerve pain responds better to things like neurontin or tegretol.
                            3)I was told that if you have questions about what the implant is for, you should ask your doctor for the name and phone of his device sales rep and call the rep and ask them about how the device affects pain, etc...

                            It sounds like you are pretty desperate for relief. I hope you find it.
                            - janetm

                            Comment


                            • #15
                              Another thing to think about. Even the company will tell you that the interstim is not for pain. And some who post here regularly and feel they are successful interstim patients report that they still need pain medications.

                              I urge you to talk to lots of people before consenting to have this surgery.

                              Donna
                              Stay safe

                              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

                              Working...
                              X