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  • I am in BION trial !!!!!!!!!!!

    :woohoo: :woohoo:
    I am so excited, I just went thru the pre-test interview for Bion and have just been told this afternoon that Dr. Feagins in Dallas has accepted me for trial test of Bion!!!!!! I have been trying to get into a clinical trial for BION for awhile now and well , it happened and I am thrilled to death!!!
    I am having my stim taken out in a couple of weeks (which you can't have if you get BION), but as I was having it removed due to increasing pain at implant site and lead site (many have read my story about my stim) so , it is going out.
    I have alot of faith in this new device as I have had much syptom relief with the stim, it is just too big, and not in the right place and causes me so much pain that the benefits are outweighed by the side effects, which have been severe enough to require increasing pain meds to deak with the stim pain.
    So I believe with out the HUGE stim that I will have a good result from BION.
    I am in great spirits for a change, I know it is more surgery, but I do believe it, it just seems so right for me, as no other conventional approach to controling my IC has been susccesful so far, interstim has controled frequncy/urgency, but alot of good that does when you are cying in pain from the implant itself.
    I know many won't agree with this , but I truely have done everything and my IC is "as bad as IC gets " according to my team of Urologists.
    Thanks to IC Lori for her info and insite on BION, I hope to have good reports to post. I will keep all informed as I go thru this trial study, and I promise to be honest, the good , the bad and the ugly.
    I am so looking forward to my butt and hip and tailbone not killing me.
    Please wish me luck and keep me in your prayers as I go into this clinical study, I hope what I learn will be of help to all who will be coming behind me, as IC Lori went before me.
    I had applied to several trials for Botox as well and I didn't fit protocol in two of them and havent heard from the other, but I have been praying and studying and praying some more for what I should do and I do believe I have been given an answer. This has given me a sense of peace about undergoing surgery, I know I am meant to try this.
    I have filed a incident report with the FDA MAUDE database about my stim as I do believe that it has not worked as it should at times, (amping up w/o me doing anything, toe curling, back spasm, vast differnces in strength depending on how I am sitting or laying, or amping up/down by touching lead implant site) just to name a few, I don't think it should be doing these things and Medtronics has no explanation as to why it is, so for me, it is time to get it out in case it may be causing underlying damage to my body. I have enough damage already w/o the stim giving me more!
    But I know interstim is working great for some and I say GREAT!!! I am thrilled for anyone who gets relief no matter HOW they get it.
    AS I said I belive in the whole idea of nerve stimulation/control, but in my body I am hoping the tiny size of BION will give me full benefit w/o the pain I have now.
    I know I keep repeating myself, but I just can't believe I actually got into the trial. My Husband Danny was home when the call came and he listened on speakerphone and he was crying, he said he has been praying so hard about how to get me out of the pain I am in and now he has hope that will happen for me.
    Well I 'd better go. I will be letting you all follow me along as I go.
    Love to all my IC friends,
    Sonja
    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
    Support American Cancer Society Relay for Life
    http://Relayforlife.org
    Living life on hope and a prayer.
    To read me and my family's story
    http://ic-network.com/patientstories/sonja.html
    Spinal surgery 04/06
    Interstim implanted12/04
    interstim removal 12/05
    Hysterectomy 1998
    Bladder surgeries due to hysterectomy,'98,99,00,01
    DXx with IC w/ Hunners 1999
    Chronic Pelvic pain
    Chronic fatigue
    Fibromyalgia
    Depression/post traumatic stress syndrome
    IBS
    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

    Meds:various pain meds,Soma (muscle relaxant)
    Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
    and a few others I'm sure,depending on how good I have been on my IC diet.

    Trying to keep a positive attitude, in a negative world.

    Best treatment of all, Good Friends who Understand

  • #2
    What exactly is BION? Is this similar to the Interstim?
    (\__/)
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.

    Comment


    • #3
      Did you get pain relief also with the BION or just urgency/frequency? Where are all the test sites? When I inquired it seemed Royal Oak, MI was the closet. I didn't know Dallas was a site too. It's further but easier to fly to. The people in Michigan were sure nice when I called though. I'm out of options too. I'm so happy for you and yes keep us posted.
      Dianne

      My bellydance "sisters" , our dogs, and me.

      Comment


      • #4
        Sonja,
        Oh that is great!!! I hope it helps you a whole lot!
        hugs,
        Janie

        Comment


        • #5
          Bion

          Can you tell me more about the Bion device? I am considering having the Interstim device installed. Thank you.
          Arizonian

          Comment


          • #6
            Hi, ICSonja, I am so happy for you! I will keep you in my prayers and keep my fingers crossed for you! I hope that you have as good a result or even better with the Bion than I did!

            For me, the surgery was a breeze. I thought for sure I'd be sore after I went home, usually after a surgery I am sore, but this time I didn't even need aspirin or anything, the incision was so small they even have a really hard time finding the scar when they examine me. So I am hoping the surgery will be just as easy for you!

            I'm so excited for you! I know there are always risks with this surgery, and you've sure gone through so much terrible stuff with the Interstim, I am hoping and praying so much that nothing goes wrong with the Bion and that it will help you like it did me with urgency/frequency. I don't feel in my case that the Bion took care of the pain 100%, but I do think that it cut it down by quite a bit. I am not spending as much time in pain as I was before. But they say, don't expect any pain relief, so don't count on that with the Bion.

            It sounds like you are in the same boat I am - nothing works and you are just about to go crazy from it. In these cases, it's understandable why we turn to surgery, we are willing to take some chances because we are so desperate.

            Please, please do post everything, good bad and indifferent, so that IC'ers can get a good picture of what is going on with this device, how it's turning out for us.

            Now, you mentioned that you felt different stimulation depending on what position you were in - I forgot to mention this before, because it seems very minor to me, but I do feel a slightly different strength of sensation in stimulation depending on how I am positioned. When I am sitting or lying down on my back, it feels a bit stronger than when I am up walking. But not so much that I need to adjust the stimulation or anything - it's not a really big difference - but there is a slight difference so I thought I should warn you.

            I am cautiously hopeful about the Bion. Doctors believe that this device may have less adverse effects than the Interstim did, and I hope they are right.

            I am very excited for you, I can really hear the hope in your posts, and I hope so much that this will help you very much! I hope you will get your life back with this.

            Blessings, Lori
            Last edited by ICLori; 10-01-2005, 09:44 AM. Reason: typo

            Comment


            • #7
              Thank you all for your support! Lori it was wonderful to hear from you and I will post all as I get going. First things first is removal of stim so after that, I should be ready and able to get started. Lori thanks for the heads up about the posional thing, it is good to talk to someone who knows where I am headed!!
              Love to all, Sonja
              Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
              Support American Cancer Society Relay for Life
              http://Relayforlife.org
              Living life on hope and a prayer.
              To read me and my family's story
              http://ic-network.com/patientstories/sonja.html
              Spinal surgery 04/06
              Interstim implanted12/04
              interstim removal 12/05
              Hysterectomy 1998
              Bladder surgeries due to hysterectomy,'98,99,00,01
              DXx with IC w/ Hunners 1999
              Chronic Pelvic pain
              Chronic fatigue
              Fibromyalgia
              Depression/post traumatic stress syndrome
              IBS
              Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

              Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
              Weekly or as needed instills w/ elmiron/lidocaine/bicarb

              Meds:various pain meds,Soma (muscle relaxant)
              Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
              and a few others I'm sure,depending on how good I have been on my IC diet.

              Trying to keep a positive attitude, in a negative world.

              Best treatment of all, Good Friends who Understand

              Comment


              • #8
                Hi, Sonja, please feel free to write to me anytime if there are any questions I might be able to answer, or if you just want to vent or anything. I will do my best to be there for anyone who is going down the "bion path" as I think of it, LOL. I hope the surgery to remove the interstim goes well, and that you heal quickly from it.

                One thing to remember is that the Bion battery right now only lasts about five years - which means after that, they have to go in and remove it, which I'm guessing (don't know for sure) will be a bigger operation than when they put it in. So there is that to think about too...they have told me that they can put a new Bion in after the area heals from getting the old one taken out, which is good, but...shrug...I guess I wish the batteries never wore out. I guess nothing is perfect.

                Blessings, Lori

                Comment


                • #9
                  Bion

                  Hi Sonja - I was wondering if you could tell me how I can find out where the trials are being held for the Bion. If you could give me a website or phone number, that would be greatly appreciated. Thanks and good luck with your surgery. Hope all goes well.

                  Rose Fish

                  Comment


                  • #10
                    Hi all, first a question for Lori, you said your battery is estimated at 5 yrs, the one I am having is rechargeable, apparentlt I will sit on a special cushion which recharges it , which can be daily.So I was curiuos if you are doing that, or if this is an extra feature of this trial? Let me know please.
                    Rose Fish, the best way to get into BION is thru there home company which is in Sylma Ca. It is called Advanced Bionics, I found it thru the internet yellow pages, and called and the woman took it from there. They will need some info about you and your illness and treatments and then if you pass that part, they will try to hook you up with the closest MD to you doing a trial.Remember though this is s trial, it is NOT yet approved for use, so weigh that on your mind, and pleae, don't pick invasive surgery as your first or even third therapy, this is for those who have nothing left to try, like Lori and myself. So pleae pray about it and I will be watching to see what you decide.
                    Sonja
                    Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
                    Support American Cancer Society Relay for Life
                    http://Relayforlife.org
                    Living life on hope and a prayer.
                    To read me and my family's story
                    http://ic-network.com/patientstories/sonja.html
                    Spinal surgery 04/06
                    Interstim implanted12/04
                    interstim removal 12/05
                    Hysterectomy 1998
                    Bladder surgeries due to hysterectomy,'98,99,00,01
                    DXx with IC w/ Hunners 1999
                    Chronic Pelvic pain
                    Chronic fatigue
                    Fibromyalgia
                    Depression/post traumatic stress syndrome
                    IBS
                    Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

                    Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
                    Weekly or as needed instills w/ elmiron/lidocaine/bicarb

                    Meds:various pain meds,Soma (muscle relaxant)
                    Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
                    and a few others I'm sure,depending on how good I have been on my IC diet.

                    Trying to keep a positive attitude, in a negative world.

                    Best treatment of all, Good Friends who Understand

                    Comment


                    • #11
                      Best of luck to you.
                      ~TRACEY~ Wife and Mother of three beautiful
                      children.

                      Comment


                      • #12
                        How exciting, wishing you all the luck in the world.

                        Comment


                        • #13
                          Hi, ICSonja, I do recharge my battery every day by sitting on a chairpad device.

                          BUT - the battery itself has a life only of five years. (It will die within a few days, obviously, if I don't recharge it, but it has a maximum life, even if recharged daily, of five years average.) I do not understand why rechargeable batteries do not last forever, but they do not apparently. My husband, who is a physicist, says that the materials inside the battery simply wear out and can no longer accept a charge or re-charge when they are old.

                          A good example of this is your car battery. Now, a car battery gets used every time you start your engine - it gets drained somewhat just by starting your engine. But it gets recharged as you drive, through the miracle of engineering. So if you were just to start your car over and over again without driving, or if you were to leave your lights on all night, your battery would be dead pretty fast (just like the Bion battery would be dead pretty fast if you didn't recharge it daily.)

                          BUT - even when you use your car battery very carefully, and never leave your lights on in the car, and drive it after starting your car every time to recharge the battery...your battery still will not last forever. I find that we have to replace our car batteries about every 3 years on average. That is probably about what you have to do, too, I would imagine. Because even if you keep them recharged, car batteries wear out and die. The same is true of the Bion device. Even though you recharge it daily, the battery still gets old and dies. And that happens on average around 5 years for the Bion device.

                          Hope that helps answer your question some. The device I have in me is the state of the art device - I had it implanted only this last March, just six months ago - it is not a device that is years old or obsolete or anything like that. The device you will have put in your body is the same exact device as I have in mine. And when they get you into the trials, they will explain to you (just as they did to me) about how the device will die within 5 years no matter what, and have to be replaced with a new device.

                          Blessings, Lori

                          Comment


                          • #14
                            Lori thank you so much for the answers to my endless questions! You are my official Bion angel, It helps so much to know someone who has already done this, I can't thank you enough. So here is to hoping that we will both be BIONic for many years to come. And I hope I can be the help to others that you have been to me.
                            I wonder if there is a car adapter, at first I thought this was a funny question and then it suddenly didn't seem as funny, it is a long 10 hour drive to the DR who will be taking care of me. Hope that my battery will last ok in the car.
                            There I go again putting the cart before the horse, I think I 'd better just plan on passing the trial phase.
                            OK another question, do you stick to an IC diet or do other therapies along with Bion?
                            I am so sorry, I just want to pick your mind apart for info. You can tell me to buzz off if you want.
                            Sonja
                            Proverbs 17:17 A true companion is loving all the time and is a brother/sister that is born for when there is distress
                            Support American Cancer Society Relay for Life
                            http://Relayforlife.org
                            Living life on hope and a prayer.
                            To read me and my family's story
                            http://ic-network.com/patientstories/sonja.html
                            Spinal surgery 04/06
                            Interstim implanted12/04
                            interstim removal 12/05
                            Hysterectomy 1998
                            Bladder surgeries due to hysterectomy,'98,99,00,01
                            DXx with IC w/ Hunners 1999
                            Chronic Pelvic pain
                            Chronic fatigue
                            Fibromyalgia
                            Depression/post traumatic stress syndrome
                            IBS
                            Migraines(OOPPSS WRONG) DX on August 28 with focal seziures, NOw on Zonegram for seizures

                            Treatments...Done 'em all, but still looking out for the one that is my magic bullet.
                            Weekly or as needed instills w/ elmiron/lidocaine/bicarb

                            Meds:various pain meds,Soma (muscle relaxant)
                            Lunesta,Premarin,Clonazepam,Inderall,Relpax,Cymbalta
                            and a few others I'm sure,depending on how good I have been on my IC diet.

                            Trying to keep a positive attitude, in a negative world.

                            Best treatment of all, Good Friends who Understand

                            Comment


                            • #15
                              Hi, ICSonja, I'm glad to help any way I can! I know there are so many questions when you are going into something like this. I had a ton of questions, too, and I was kind of nervous about the surgery and everything so I know how you feel.

                              You don't have to worry about the battery dying on a long car ride - in fact my team told me that if I had a weekend trip (2-3 days) I could leave the charger at home and just let the battery run down a bit and then recharge when I got home. Although ideally when I'm at home I am to recharge once per day.

                              My Bion was placed perfectly so I ended up needing very little stimulation/power, so when I recharge it only takes me 8 minutes per day. So my Bion uses very little power each day. I suppose I could probably go a week if I had to between rechargings, but I wouldn't want to push it.

                              I do have to stick to the IC diet. I was hoping the Bion would completely stop any bladder pain, but I find that while it helped me a bit with the pain, it certainly didn't stop it completely at all. They will tell you (and I will tell you) not to expect ANY pain relief at all from the Bion. It's not meant for pain relief. If you do get slight pain relief, it's kind of a nice little miracle, but not something you can actually count on at all. Really it's just for urgency/frequency. I find that the usual triggers - fresh grapes, cherries, juices, antihistamines, etc. - still give my bladder considerable pain, and the Bion does nothing to help that.

                              Also, they generally will continue you on any therapies you are currently on. Although they are a bit hesitant and will discourage you from trying new therapies once you are in the trial. For instance, let's say you want to try the BCG or something - another experimental trial - they don't really like the idea of you doing that because it might mess up the data they are collecting from you about the Bion. So they kind of want to make sure they can see if Bion is helping you or not.

                              For the five-day voiding dairies that you have to fill out (you fill out one before they put the Bion in, then one at various times during the year when the Bion is on, then one again when they turn the Bion off for 45 days) they do ask that you discontinue all meds for five days prior and of course during the five days you are filling out the diaries. So that means a ten-day break if you are on, say, Elmiron or some other medication for IC.

                              Your researchers might tell you something different...just letting you know how my team is doing it...I would expect it would be pretty much the same from team to team but I don't know for sure...

                              Hope this helps some...ask me anything anytime you want!

                              Blessings, Lori

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