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  • #16
    I read something (I wish I knew where) about the interstim. It said something about it working well for the first year then your nerves retrain themselves and by the 5th year it really isn't effective. I will be on my 5th year next year. I don't keep it turned on all the time. It's on now and I can feel the pulsation on my right cheek. Sometimes if I have it turned a little higher it makes my right foot curl up. Just freaky!!!

    I had my appt with my uro today. He doesn't think its a good idea for me to self cath since I have such a small urethea, but he did give me pain meds, valium supp, b&O supp (hope I don't get them mixed up) That was sick wasn't it??? He also gave me sleeping pills that were used before Ambien and Lunesta. Those 2 have no effect on me but to make me goofy and for my family's enjoyment. The love to bring out scrabble or Uno when I am on them. I still insist that haves is a word. You know the haves and have nots... I won that game!!!

    Better get back to work, it's time to go home!

    Comment


    • #17
      I really hate to quote but I don't want any one to get lost i the thread
      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.
      My intestim surgeries were roughly 70 grand.. pretty crazy huh.. bot thats not what I wanted to address..
      it absoultely un nervese me that a doctor would tell a patient that the stim will help your bladder pain.. interstim is not in any way, shape, or form for pain this needs to be tattooed on these morons heads.....
      interstim can help you with the urgency pain.. but it will not help you with your bladder pain.. please know the difference.. with urgency pain the pain will ease up or go away when you void.. If its your bladder that is in pain, it still will be after you void..
      If you only got this dvice for pain, I really think what ever you paid out of pocket should be given back to you by the moron that told you it was for pain...

      I wish you the best of luck
      'The will of God will never take you where the Grace of God will not protect you.'

      Comment


      • #18
        Interstim therapy for pain?

        Dear Tigger Gal,
        Thank you so much for your input on interstim therapy. I was going to have it done in Nov. because I was told it would help with my bladder nerve pain and Fibromyalgia pain. I am so glad that I had the sense to research this and talk to other IC patients. I have already been through so much with being misdiagnosed this summer which have really cost me alot of money I didnt have. I am currently on Elmiron and Lyrica with very little relief. I have also done bladder instilations and am hoping there is going to be something I have not tried to stop the agony of this daily pain. If anyone has tried anything different please let me know about it so I can discuss it with my doctor. Thanks again for the info.
        Paula

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        • #19
          I've never voted for anyone to get the president award before, but since so much time, energy, research and living went into this thread/sticky I think it deserves the award.

          Good Job Cindy I'm sure this will be helpful to those who are thinking about getting the stim.

          Rhonda
          Medicine taken daily or as needed:
          1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
          2. MS.Cotin 100mg 3x daily
          3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
          4. Fentanyl 100 mg Change every 48hrs.
          5. Gentamicin 80mg install after each rescue treatment
          5 Leviquin 500mg self start as needed.
          6. Klonopin 1 or 2 daily as needed.
          7. Prosed/DS as 1 every 6hrs as needed.





          I have IC, but IC doesn't have me anymore!

          Comment


          • #20
            I also agree a lot of time, research study and zillions of question should be answered before jumping into the stim. The stim is the very last thing that should be tried after all other treatments has failed.
            Make sure the Dr. answer your question in terms you understand not in Dr. lango. Make sure your rep. answer those question too. make sure they match up! Talk to others who has had the stim both good and bad.
            Take your time with your research. Don't let anyone force you into making this choose this is yours and your choose alone!

            Rhonda
            Medicine taken daily or as needed:
            1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
            2. MS.Cotin 100mg 3x daily
            3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
            4. Fentanyl 100 mg Change every 48hrs.
            5. Gentamicin 80mg install after each rescue treatment
            5 Leviquin 500mg self start as needed.
            6. Klonopin 1 or 2 daily as needed.
            7. Prosed/DS as 1 every 6hrs as needed.





            I have IC, but IC doesn't have me anymore!

            Comment


            • #21
              Confused

              I have been studying InterStim for about a month now since my Doctor recommended it. My surgery is scheduled for November 8th for my Test Implant. November 22 for my implant.

              Everything I read about this problem, people complain about pain.

              I have suffered with this for 8 years. At the beginning it was going to the bathroom once every two hours. And most of the women I knew had to go to the bathroom once every two hours, but they could hold it longer if they had to. I couldn't. I had to go.

              The last year has skyrocketed to once every 20 minutes on good days and every 5 minutes on bad days. The last few weeks have been bad days and I have had to sleep on the toilet at night time because I was constantly getting up to go to the bathroom. It was then that I decided to really do something about it or think about what I would do with my life since I live a very busy life.

              For 8 years I have gone to doctors who told me they couldn't find anything wrong and to Kegel exercises, then lose weight (I'm not THAT heavy). Then they said it was Stress and Mental. So I would go to the spa to relieve the stress, and then I would tell myself, I don't have to go to the bathroom it's in my mind.

              Part of my life includes giving public talks to various Landlords around the country. I had cancelled all my engagements due to my condition. But in 2004 I was asked to attend a Convention and I truly wanted to go to this one and so I asked my doctor if I could have a catheter placed inside me so I could travel and give my speech. When the nurse inserted the Catheter the pain was so bad I wanted to scream. I told her IT HURTS and she just waved her hand at me and said I'd get use to it. When I left the office I could hardly make it to my car. I was crying and was going to go back into the office when I told myself I'm just being a baby and I'll get use to it. By the time I got home. I have a stick shift Volkswagen, I was out of my mind. I tried yanking the catheter out, forgetting it needed to be deflated. My hands shook and I was truly out of my mind with pain, and remember to deflate and when I did I yanked that sucker out. I have to tell you...I was so sore from that ordeal that I didn't have to go to the bathroom but once every three hours after that for almost 4 days and I thought I died and went to Heaven. But then my problem came back and worse then ever.

              I went back to that same doctor and told him I need something done. That I can't live my life like this any more. I told him I don't have a life!. He said, "Well what do you want me to do about it?" I could have slapped his face. I was about to walk out of his office when he recommended this doctor who specializes in IC and InterStim. This guy would be my last chance. What happened to me now would depend on what happens with this doctor, because I truly was at the point and still am, in deciding what actions I will take if none of this works!

              I made an appointment with Dr. Kenneth Peters, who I believe is listed on this IC Board. He has written books on IC and InterStim and does research on our problems.

              I told him about my experiences with the previous doctor and all that I've gone through and told him that I have now resorted to sleeping in the bathroom. He told me something very shocking. He said all the people who come to him, sleep in the bathroom. I didn't realize how many people suffer with the same thing as I do. WHY?? What happened to us?

              He gave me a Chart to track my problem. Because I travel most of the day I could only track by stationary trips to the bathroom. That count was 47 times. It did not include the times I had to go in my diaper because of traffic Jams and not being able to find a bathroom in time while I'm on the road. BTW I had resorted to wearing a diaper when people at the super markets would be taking my shopping cart and putting my stuff away because they thought it was abandoned. I told them that I had was in the bathroom, but they said, they didn't know. This happened to me so many times and I'd have to go to the bathroom while shopping at least 6 times by the time I was done, I decided diapers were the answer and worked fine for awhile until I tarted going through the diaper and through my clothes. (This is embarrassing to say but I want people to know. It's important)

              So I will do ANYTHING. I am DESPERATE! This doctor seems to be good. But once again I DO NOT HAVE PAIN, UNLESS, I can't go. And I have to go all the time. So I do...But I'm afraid that I will have to go when I get this implant and I will be in pain because I won't be able to get up and go.

              That is the only time I have pain is if I am prevented from going to the bathroom or going in my diaper. When I go to the bathroom it relieves the PRESSURE, an extreme pressure to have to go..but I don't consider it pain.

              Do all of you regard the PRESSURE as being PAIN, and if so, are you saying that I will always still feel like I have to go.

              BTW I do go. I've never felt like I had to go and couldn't. I go an ounce every hour if I can hold it an hour. But normally and lately it is about every 5 minutes and good days every 20.

              Thank you.

              Comment


              • #22
                I got the interstim in 2002. I have horrible pain with my IC and my doctor told me that it "sometimes" helps with the pain. The first 1 I got was on my right side. My frequency was improved and my nights were much better. I did fill the pulsing from the interstim, but I got used to it. It also made my right foot kind of turn in every few seconds, but the doctor was able to adjust it. About 2 months after the implant, my surgery site got infected. After several rounds of antibiotics, they had to remove it and wait for it to heal, they they put another one in my left side. I am not as happy with it as the first one, but my life is better than before interstim. I still have pain pretty much 24/7 and on pain meds and meds to help me sleep. My freq/urgency is about every 2 to 3 hours during the day, but at night when I have flares I could spend the night in the bathroom. But like you said about not being able to wait to pee. I can hold my bladder. I go as soon as I can so I don't create a flare or spasm because holding it for long will irritate my bladder and put me into a flare. I have had many adjustments and will continue to have adjustments with the implant.

                Good thoughts! Tracey

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                • #23
                  Wow Nancy I'm so sorry to hear how much in pain you are. We can all relate I'm sure. I do have frequency but not to the extreme that you have. Pain is my main problem. I have a constant burning in my bladder. It truly feels like it is on fire, raw. It feels like I am carrying around a raw bleeding organ that just burns constantly. I also have extreme pressure and it's torture to sit or walk for any length of time. I am thankful though that I do sleep at night. I take my elavil and my hydroxyzine and the others and it knocks me out and usually keeps me out all night.

                  Have you tried all the oral medications, physical therapy, instillations etc,?

                  I just think you should try everything before doing the interstim. I'm afraid for you. Have you tried pain pills? I'm currently on the fentanyl patches and I'm doing better. I have been on morphine and demoral but they made me very sick these so far do not. I'm not on a strong enough strength because I still have quite a bit of pain but I'm getting there. My doctor usually increases my dose a little each month. I think when I go next time and get a highter dose I'll be feeling much better.

                  I just would hope that you would try everything before doing the interstim. I cringed at the thought of the instillations and didn't have them for years, but they help me.

                  Just a thought.

                  Karen

                  Comment


                  • #24
                    I went through the cystos, hydros, dmso treatments, physical therapy, the charting, etc...before my interstim was implanted. I read everything I could get my hands on. Like Karen, I recommend that you try everything before having the surgery. Even though I am not pain free and still have the freq/urgency problems, they are not as bad as they were before the surgery. I still have flares that last about a day and I always have pain at night and need pain meds, but when I look back at my pain log prior to my surgery, I can see a difference. I used to have flares that lasted days and even weeks. I had to quit my job because my life was so effected completely by the pain. I also know a lady at my church that has the interstim for longer than me and she is doing great. I didn't know her before the interstim, but the one thing that she said that is different from mine is that she turns hers off so that she can go to the bathroom. I don't understand that, but she said that she has no pain.

                    Comment


                    • #25
                      I agree that this is a must read thread for anyone trying to figure out what comes next. The doctor who won't change the catheter script really irritates me because he took an oath to do no harm yet that is exactly what he is doing. Also, if he truly knows about IC and how the interstim works he knows that his patient may still need the instills after he puts the interstim in - I do. That also tells me that indeed he just wants to do the procedure and is not really interested in caring for the patient.

                      I had a uro who did my botox. Botox gave me my life back and was a true miracle treatment for me but my insurance ended up not paying for it. The first time I borrowed money from my parents to get it done and paid for. The second time the uro would not do the botox because I did not have the money up front and he would not let me pay it out. He said that would take way too long. So, instead my symptoms came back and I reverted back to my regular IC condition. I think his guilt got the best of him and he hated seeing me like that because I received a certified letter in the mail from him stating that because of my "financial situation" he would no longer be able to treat me. That man is no doctor - he boarders on even being human in my book!
                      Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
                      _____________________________

                      DX: IC - November 2002 after hysterectomy
                      Interstim implanted March 2006 - died May 2011
                      Interstim replacement June 2011
                      Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
                      Docs: Pain management doc, urologist, family practice

                      Comment


                      • #26
                        oh momw/ic, I can't believe it!!!!, I hope that the FDA approves the botox soon, so that you don't have to pay for it. and until then, that you find a way to pay for your treatments!!!

                        Comment


                        • #27
                          wow you guys thanks alot..
                          I have fibro too. and whom ever told you that the stim will help your fibro needs slapped.. HARD.... cuz if it did I would be grateful.... I am so sorry that you were misinformed....

                          Nancy.. I pmed you.. Dr Peters is my Doctor, and I would like to call you.. I think he is DR GOD.. I stake my life on this man.. I have never met anyone let alone a doctor that cared so much about his patience well being. He done my stim.
                          'The will of God will never take you where the Grace of God will not protect you.'

                          Comment


                          • #28
                            To Tigger Gal

                            Thank you for your detailed accounting of what you've gone through and the procedure of InterStim Surgery. EXCELLENT and much needed advice for those of us going through all this.

                            Knowing that you also LOVE Dr. Peters helps a lot and I was quite impressed with him.

                            Even though it sounds quite embarrassing, all that happens to you when their injecting the wire...YIKES...LOL....When one is desperate...embarrassment is something I can live with...just help me not to go pee every minute of my life.....

                            I hope it works for me.

                            If not Dr. Peter's prescribed BOTOX. It freezes the bladder. That's all that I know about it. Hey if it takes the wrinkles out of my butt I'm all for it...bring it on! (Only kidding) but I do hope the interstim will work.

                            Because my carrer entails me spending a lot of time in court and at the airports, I can imagine the fun I will have going through the metal detectors and the alarms I set off. EGADS! Well they did say they'd give me a card to carry.

                            Thanks Tigger Gal for your wealth of info. It is APPRECIATED!

                            Comment


                            • #29
                              Nancy you are very welcome.. I highly recommend Dr Peters.. I need to get in there and see hime for a check up. Think I will do so this week.. I also am going to tell him if his patients need to talk to someone about the stim I am available.
                              'The will of God will never take you where the Grace of God will not protect you.'

                              Comment


                              • #30
                                Interstim

                                Hi All,

                                Well, November 9th I am going to have the lead or two leads put in for the interstim. Then I do the two week trial??? I have read all of your postings in regard to the implant. I am still worried about the whole thing. My life is on hold with this I.C. disease. I have tried almost every meds out there and they only work for a very short time. They mostly help me to be able to go to sleep for 5 hours before I need to go to the bathroom. I just feel like the inside of my bladder is raw and someone is putting lemon juice on it.
                                I have been on Elmiron for four months now and the only thing that it is doing is making my hair fall out. My new Dr. tells me that if the Elmiron doesn't help by three months it is not going to work for me. I did start this med by instills for five months and it only helped for two days after. I was doing the Elmiron instills for five months now I take by pills.
                                I am happy to have all the information posted with people that have tried it. Seems more bad than good???
                                I would be happy to hear more from all of your in regard to the implant.
                                My concern is the pain in the legs that was mentioned in these postings. Need more information on that. What did the Dr. say about the pain in the legs?? So, anymore information would be greatly appreciated.
                                Thanks,
                                Rose

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