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  • Interstim coming out!!

    I went to a new doctor yesterday who was very straight forward. He said I should not have the Interstim for pain, and since I have had four surgeries trying to fix it, there is nothing else to do. SO, next week, it is going to be removed. I have to spend one night in the hospital.

    He also said that I need to get a new frame of mind. I need to stop thinking what can cure me and stop this pain, to how can I manage this and get on with my life. He said that I have had every possible treatment in the past and I just need to accept this is my life. I told him that is a lot easier said than done. That my life is miserable. So, he is just taking the interstim out. That's it. He said to go to a pain clinic(which I am already scheduled) and to have internal physical therapy. How weird is that?!?!

    I just wish I could make a doctor understand that this pain in unbearable. It seems like talking to doctors and making them understand the pain is just like.. <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

    I really don't think I can take much more... [img]frown.gif[/img]

  • #2
    I'm really sorry you will have to have another surgery, but if it has to be --- it has to be.

    The physical therapy your doctor mentioned is extremely helpful to a lot of people --- if you have pelvic floor dysfunction (PFD) it can be a real benefit.

    Sending healing thoughts,
    Donna
    Stay safe


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    • #3
      Please, what ever you do, don't give up your search for the dr who WILL treat your pain and make you comfortable. I almost did and had I, I wouldn't have the fantastic one I have now.

      Thank you for posting about the interstim in regard to pain....so many people are being mislead that this surgery will take away their pain and they are devestated when they learn they were lied too.....it's just so hard to watch someone go thru that....don't let your experience be a waste....share here. help others with what you have been thru.

      Having your pain manageable does make it easier to get on with your life.....so search and search until you find the right dr....trust that he/she is there...you WILL be lead to the right person.

      My heart breaks for you but I also know that with the proper pain meds, you can have a part of a day where you will eable to be productive again and it's SO great to get that back.

      tona of <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />
      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


      • #4
        AKC... I think that Donna and Teri said it soo well!

        I, too, was in agonizing pain to the point that I contemplated the unthinkable... and it wasn't until I found a doctor who really helped me.. that I really DID get better. I rarely have pain now.

        Please don't give up. I'll be happy to spend as much time as you need by phone to help you find another pain doc.. if this one doesn't work out. Sending prayers and STRENGTH your way!

        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/

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        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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        • #5
          Thanks to everyone for giving me uplifting support!! I have been ready to give up, but reading your messages gives me the strength to go on and not give up!! Just knowing that there are others out there that experience the same things is EXTREMELY helpful!! You all are my angels and an answer to prayer!! You just have no idea!! I just need to keep praying that my next doctor will be the one to listen to me!!

          Thanks again for everything to all of you who have replied! I can never tell you how much you are helping me! I too have thought of doing the unthinkable because I am so miserable!! You are saving me!! <img src="graemlins/angel.gif" border="0" alt="[angel]" />

          Comment


          • #6
            AKC,

            I can only add a small bit to the wonderful support you have already been given. A number of years ago I was in my first car accident which among other problems caused a fracture of my pubic bone (osteitis pubis). This was very painful as any movement would make it worse. After various treatments a prominent orthopedic surgeon said he thought if he put plates and screws in my pelvis to stabilize my pubic bone it could help the pain. I went ahead with the surgery as I was at my wit's end as to what else to do. The problem is that I have severe osteoporosis (from age 34) so the doctor had to put twice the amount of titanium into my pelvis to fuse the pubic bone. The point of my story is that after about a year I was going crazy with this "hardware" in my pelvis. Now each and every movement was very painful and I just knew I could not live the rest of my life with these plates and screws in my body.

            The doctor reluctantly agreed to do the surgery. My recovery was long and difficult but it was my choice. Even though the surgery significantly worsened my IC it was such a relief mentally to have those pieces of metal out of my body. My urologist wants me to consider having the Interstim test but I have told him after what I went through with the above experience I do not want any more foreign objects surgically implanted in my body. Since my main IC symptom is pain I was not considering it anyway as I have heard and read so often that it really isn't helpful for pain.

            I guess what I am getting to is that I hope for you once you have the surgery to remove the Interstim you will find you have less pain. At least I sincerely wish that is the case for you. It sounds as if you have suffered enough already.

            Re pain control have you tried the B & O suppositories? I was given one after my last C & H along with a dose of morphine and it made my pain much less than with my previous procedures. I used them for a while after but have gradually stopped using them of my own choice due to experiencing some side effects. But perhaps they would afford you some comfort after this upcoming surgery. Good luck and I hope all goes well.

            Louise

            Comment


            • #7
              I can't take morphine

              I am sorry to hear of your advancing pain. I am in a flare myself.
              I was given morphine to try. I had never used it before. So, what could it hurt.
              Well, it did. It caused my urethea to spasm even more. I was in more pain after taking the morphine, than I was in my flare! I went back to Lortab for breakthrough pain. At least that lets me Pee!
              I use a fentanyl patch (duragestic) everyday, but sometimes I get these horrible flares, and just have to wait till my body decides it is time to relax and stop putting me through this horror.

              Newbie to group:
              Miki
              Miki
              Hit and past 60 yrs old. Now 64
              Married: with
              2 adult kids......33yrs male, 30 female.


              DX: about 1982: chrontic urethritis, then IC, then Pelvic pain syndrome. (whatever)

              Meniere's disease, Now 90% loss of balance nerve on left side, inner ear. BPPV, GAD
              IBS (whole life)
              Migraines
              dyspepsia


              Given up going to Urologist...last one asked me what I wanted him to do for me.

              Comment


              • #8
                I know what you mean. I have a doctor that thinks that there is nothing wrong with my bladder that Pyridium won't cure. it is very frustrating. Don't give up looking for a doctor that takes you seriously. Good Luck to you.
                ~TRACEY~ Wife and Mother of three beautiful
                children.

                Comment


                • #9
                  Akc,
                  I am glad that your new doctor is straight forward with you.. You should never have been given an interstim for pain... I am so sorry your doctor mis lead you, he was so wrong....
                  please keep us posted on how your removal went.. and btw.. see what you can do for malpractice! he put a dvice in your body representing it as a pain reliever.. and its not...
                  hugs
                  Brat
                  'The will of God will never take you where the Grace of God will not protect you.'

                  Comment


                  • #10
                    "Get on with your life and manage the pain" please. Sounds insensitive to me. How can you get on with your life if you cant leave the house. I couldnt for years. No one can ever understand the pain someone else is in unless they go through it. They should be thinking "There but the grace of God go I."

                    Comment


                    • #11
                      Originally posted by mayray518
                      " No one can ever understand the pain someone else is in unless they go through it. ."
                      Mayray,
                      you sure said a mouth full, in just one sentence... No one knows how you feel.... and no one should judge your thoughts on how you express them.. Especially a doctor.
                      Brat
                      'The will of God will never take you where the Grace of God will not protect you.'

                      Comment


                      • #12
                        My husband has prostate cancer and will be having it removed on Nov 9. The uro we have chosen to do the surgery does alot of interstims and we talked about my failed attempt and he asked me how I was dealing with it. I told him that I have come to peace with it because what other choice do I have and I consider myself "only" a pain patient now and on most days okay with that.
                        Well, watching my pillow top matress cave in more and more everyday because of all the time I spend in it is turning into a kick in the ass. We have had so many beautiful summer days and I have spent the summer basically in bed.......so who am I kidding that I'm making peace with it.
                        I know that I will be responsible for my husband for at least 2 weeks after his surgery and I am scared to death and praying like crazy that god gives me the physical strength to do this. My husband has been so great taking care of me for the last 5 years and now I owe HIM and I pray god will let it happen.
                        The one thing that I NEVER felt after I had my implant taken out was a failure because I KNEW I didn't fail. The device just wasn't meant for my body. I no longer jump from uro to uro looking for the pot of gold at the end of the rainbow. I have a uro who is right on top of all the new treatments so while we are waiting, he's doing his best to keep me comfortable enough to make it thru the days.....I may not accomplish a damn thing but at least I am making it thru the days and nights.
                        DAMN those dr's that tell patients the device is for pain. OR for them even saying it 'might.' When I had my original surgery I was told that the only way to tell was after the surgery but I should go into it believing it would not. I think that if more patients would be given that little bit of advice it could save alot of extra physical and emotional pain.

                        wishing you all the very very best
                        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
                          AKC, I am so sorry you have to have another surgery. I hope that things with your surgery and you new treatment goes a lot better for you. Although there is some accepting that needs to happen with IC that should never mean we give up on the fight to get better. As many have told you even when we feel like giving up .....finding the answer is still possible. I hope you get the doc and treatment you need.
                          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.
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                          • #14
                            ((((((((((Teri)))))))))))
                            you said it well...... I am sorry about your hubby..... you know you can email me any time....
                            Brat
                            'The will of God will never take you where the Grace of God will not protect you.'

                            Comment


                            • #15
                              terri

                              I have been in a flare for the past couple of weeks. Plus other things that have made me feel the same way as you. The mattress is really getting lower and lower where my body is.

                              Perhaps: trying to get a nurse to help him, if you can't. There are visiting nurse services, and your doctor might be able to hook you up with one.
                              IF they feel the main recouperation period will be 2 weeks, if you have good insurance, and or/ have extra money socked away, it might be the best thing to do. If you are sick and he is sick, I don't know how well you will do with nursing him back to health.
                              I would think that you could get something from the kitchen a few times a day. Stock up on/or do it via on line, groceries, and do microwave dishes.
                              Don't do the whole dinner etc routine.

                              Enjoy the time that you both are feeling miserable in bed Together.

                              I have found that when I am feeling so bad that I don't get out of bed, (except to pee and eat...which I bring back to bed with me)
                              And then my husband gets home from work tired, and lays down with me, it is a really warm feeling. It is like even though we are both feeling down, it is nice to have another person in bed with out at that time.

                              Check into the visiting nurses,
                              check into Amazon.com, Griestides food. (they choose what you order and ship it to you.)

                              Good luck, and hope you will be ok.
                              There are ways to get around things, and maybe a different view point will help.

                              Best wishes
                              Miki
                              Miki
                              Hit and past 60 yrs old. Now 64
                              Married: with
                              2 adult kids......33yrs male, 30 female.


                              DX: about 1982: chrontic urethritis, then IC, then Pelvic pain syndrome. (whatever)

                              Meniere's disease, Now 90% loss of balance nerve on left side, inner ear. BPPV, GAD
                              IBS (whole life)
                              Migraines
                              dyspepsia


                              Given up going to Urologist...last one asked me what I wanted him to do for me.

                              Comment

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