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  • Where to start?

    Those of you with Interstim, this question is for you! I am only considering it. But I know it is a longer process (especially because I have to find out exactly which treatments left my insurance will or will not cover) and I want to get started informing myself as much as possible (well, beyond going to med school, )
    You can check my signature and see what we have tried so far. I know it is not for pain; my pain is mostly PFD related and with muscle relaxers is starting to get better. The thing is NOTHING has helped with my frequency and Urgency except Elavil (which I can hardly tolerate. I take only 10 mgs at night and it wipes me out, so I only take it when I am flaring and again only at night. There is no way I can take it during the day, I fall asleep right away or am too groggy to get off the couch, let alone drive, work, function. And the whole point of all this to me is to function. I want to work a full time job.I cannot get disability (I have only worked part time these past 4 years and do not qualify) and my husband makes too much for SSI. And still we struggle with finances. Plus I desperately want to be able to have a semi-normal life. I sure have tried, we still take trips, ect. but going to the bathroom is on my mind 24/7. The urgency is really getting to me the most. I honestly feel like I have to go ALL THE TIME! And I am not exaggerating. I can use the toilet and as soon as I am washing my hands I feel the urge to go again. Some evenings (which are the wosrt execpt during a flare) I am in the bathroom every 5 minutes before I can get to bed without springing back up again! And this is on meds!
    Even on the diet (and I am STRICTLY on the diet, including reading labels to be sure there is no soy, preservatives, everything!) I still go 20+ times a day, and that is when I am not flaring.
    I am mentioning these things because I want to let you know this is not something I am considering lightly.
    My Doctor (an IC specialist who is the only Uro I have seen who is giving me options, helping with my pain, and treating me with respect) has brought up Interstim. He isn't pushing it, he wanted me to know that it is an option and that he considerers me a good candidate. And he is not on of those Doctors who tell people to get it right away. I was diagnosed by a different Doctor last September and have tried basically everything my insurance will cover.
    So I am not feeling pressured.
    Now that that is all out of the way, where do I start? I have contacted the medtronics people, but haven't received any info packet yet (Are they usually slow?)
    Beyond that, are there any other good resources to find out all the details in one place (I am talking everything from how to find out if your insurance covers it, to the procedure itself and what both the trial and true procedure involves, recovery times, as well as uncovering the practical, day to day info of all that goes with it?
    I have been reading lots of posts, but get quite confused. Sometimes I need everything laid right out there in front of me. Is there a book, site, certain post anyone can direct me too?
    I just want to make sure I really am a candidate. I keep hearing "try all options first" And I have tried the "conventional" ones. Is that enough? I haven't yet tried Botox, Cyclosporine, Cellcept, Cytotec, (forgive my spelling if these are wrong!) These are therapies we are pretty sure my insurance won't cover (my insurance wouldn't even cover Singulair as a treatment for IC), while the interstim they might. Again, I am looking into these as well.
    I am just starting to feel like I am going to have to look into it. I am very cautious and scared because to me this is a big deal (having something in my body like that-you better believe it's a big deal!)
    Thanks for reading this LONG post! I just wanted to really explain my symptoms and what I have tried so far.
    Again, all the meds and procedures are in my sig.
    Rachel
    DX's:
    IC; PFD; possible Fibromyalgia; IBS;

    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

    I've Tried:
    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
    Currently using:
    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!


  • #2
    I could have written most of your post. I had the InterStim trial on May 21. It did not help my frequency at all. I had the trial re-done on my other side June 4. So far it's not helping.

    I too considered it very carefully. I have had the luxury of a supra-pubic catheter in fulltime because the frequency eventually leads to retention and complete inability to void. Now with the stim I have to clamp it off and I remember how much I hate thinking about peeing 24/7! I void 30-40 times per day.

    My Dr. told me that my anotomy is a real problem for the Stim. My sacral nerves are very close together making proper lead placement impossible. So I can't really say the technology failed me. It's been hard to get a good trial.

    Comment


    • #3
      Tacy99,
      I am sorry to hear that this isn't working for you. I am aware that may be the case for me. If I get this done, I will go into it with the same attitude as my Hydrodistention, I wasn't expecting a quick fix or miracle,and I got no relief fromt the hydro.
      I am just feeling like I am out of options. But I don't know if my insurance even will cover this. I keep hearing it is very expensive and my insurance, well quite frankly, sucks! So we will see!
      I hope you are able to find something that works for you soon.
      I'll be thinking about you!
      Rachel
      DX's:
      IC; PFD; possible Fibromyalgia; IBS;

      Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

      I've Tried:
      three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
      Currently using:
      Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
      Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
      I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

      Comment


      • #4
        Well, I looked around..

        I found some great info "play by play" on Cindy's signature. That helped alot! Thanks Cindy! Also, I found a checklist in the handbook including things to try first ( and yes I have tried a form of all of them) plus things I didn't think of involving the trial and actual surgery. So I will be taking this list to ask questions when I see my Doctor in July, but I may just call the insurance company myself to see if this is an option.
        Also, I went back to the medtronics website and called the line to get info sent, so hopefully it will get here soon. I am still a little apprehensive. The patient stories on their site are nice, but all of the patients are much older than me. I did talk to Erika here and that helped (she's in her 20's like me). I haven't found anything saying you have to be a certain age, so I don't think that is an issue.
        But if anyone has anything to add, please chime in, please, please, please!
        Thanks!
        Rachel
        DX's:
        IC; PFD; possible Fibromyalgia; IBS;

        Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

        I've Tried:
        three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
        Currently using:
        Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
        Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
        I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

        Comment


        • #5
          Well, I watched the DVD and read the info from medtronics and feel I understand this much more.This being said, I don't feel I am ready yet to try it. I saw the Doctor today and told him I still do not feel ready to try Interstim. He agreed. He just wanted me to know I am far from being out of options. I am starting Neurontin next week and still trying to find a good PFD therapist before looking any further into this surgery. Thanks for reading!
          Rachel
          DX's:
          IC; PFD; possible Fibromyalgia; IBS;

          Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

          I've Tried:
          three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
          Currently using:
          Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
          Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
          I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

          Comment


          • #6
            Wishing you luck Rach...
            Hugs
            Ronda

            ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


            Link to Patient Handbook:
            http://www.ic-network.com/handbook/

            Diet Reference Sheet:
            http://www.ic-network.com/diet/icndi...tsheet0909.pdf

            Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

            Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

            Meds I have Tried:
            Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
            Lexapro< Bad reaction to this med!
            Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

            Dx With IC in Nov 2006 with Hydro/Cysto
            Hydro/Cysto Caused Bladder to Rupture.

            Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



            ICN 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
              Rascal

              Your post sounded like my life before i got my interstim implant. It has been a blessing. I had my trial on April 20th, went back on May 8th for final implant. Had some problems coming out of anthesia, i kept throwing up. Was there for about 3 hours before i could even keep ice chips down. Left hospital after 9:30p.m. that night. Very long day. Drove straight to hotel. My husband was quite the trooper. He isn't one for setting all day. The surgery was 6 hours behind schedule, first surgery of day had problems threw everything off. The hospital staff was great. Took 4 or 5 days before i really notice a difference. It has been wonderful. It is a hassle getting to this point. It took me about 3 weeks to get approved by my insurance company and you sure have to follow up all the time because i did get the runaround several times people telling me what they thought i wanted to hear and they really had no answer for me. I talked directly with insurance company several times because the insurance gal at hospital that was to take care of things dropped the ball. Things go done faster when i intervened. Then once i got approval of course another 2 weeks to get scheduled for permanent implant. This procedure is not for everyone and everyone is effected differently by it but is worked wonderfully so far for me. I have not had and ic flare since end of APril, i keep my fingers crossed everyday. I am now finding out that i most likely have FIbromyalgia, i go see specialist on July 26, i have been dealing with the pain, aching tiredness and problems with this. My husband has been a trooper though. Helps me out a lot. You will know if the decision is right for you to try trial implant just give yourself time.

              Comment


              • #8
                as you know I am om my 2nd stim. I broke the first one. I fell and very hard at that and made it unprogramable. I have had it 4 years. The few months without it was so bad, I was greatful to have it back in and working. I am glad my info helped you, feel free to ask any questions you need answered.
                'The will of God will never take you where the Grace of God will not protect you.'

                Comment


                • #9
                  Thanks Rascal. I am so happy to hear you are having good results and I hope you continue to do well! I am learning that getting basically ANYTHING approved with my incurance is a hassle, so I will be contacting them myself before the Doctor's office does if I go down that road. I am also very lucky to be within 2 hours of my IC specialist who is also VERY experienced in performing the INterstim surgeries. At first that sounded so far away, but I keep hearing about IC patients like yourself who have to go out of town and stay in hotels. Just another reason to count my blessings!
                  Thanks again!
                  Rachel
                  DX's:
                  IC; PFD; possible Fibromyalgia; IBS;

                  Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                  I've Tried:
                  three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                  Currently using:
                  Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                  Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                  I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                  Comment


                  • #10
                    Thanks Cindy! You know I am not shy if I need advice or info so I will be taking you up on that offer soon!
                    Hope things are well with you. I haven't posted much lately. The past few weeks have been rough and I (stupidly) have been isolating myself, but am not today! I just keep flaring and no one knows why or how to stop it. But I am praying I will get relief with Neurontin.
                    Anyways, I hope you and your family have been doing well.
                    Talk to you soon!
                    Rachel
                    DX's:
                    IC; PFD; possible Fibromyalgia; IBS;

                    Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                    I've Tried:
                    three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                    Currently using:
                    Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                    Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                    I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                    Comment

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