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questions about meds. and flares before the inner-stem trail?

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  • als
    replied
    rachelm, what state is your doctor in? I am looking for a doctor who knows about IC and pelvic floor disorder. I have terrible pelvic floor tightness and spasms. I tried P.T. and it made everything worse. My doctors tell me to go back to the P.T. to help with the pelvic floor spasms. My doctor mentioned the interstim, but I am afraid of that idea. Does anyone have a great doctor in Pgh. PA? Any good Physical Therapists?
    Anyone had a good experience with P.T? I'm afraid it will make my IC worse, but the pelvic issues are getting worse.

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  • rachelm
    replied
    Brat,
    It's being done at the hospital but they said it would be a local. I see my dr. tomorrow so I will ask him again. His nurse said that they will have everything available if they need to put me under. Are you saying you don't know of anyone who has experienced relief from spasms? I guess at this point I'm desperate enough to at least give it a 2 week trial. I'm unable to live my life the way I am right now so I've got to give it a chance. What you described about the doubling over reminds me of spasms maybe I'm mislabling it. From what I understand the constant contractions or spasms is what the interstim is supposed to reduce. It's because of the constant muscle tension and spasms that I have retention. It's like my muscles won't let go.

    You have been helpful. I will go to the dr. tomorrow armed with more questions. I certainly want to make sure that I don't feel any pain during the procedure. I have a lot of confidence in my dr. not only is he listed on this site but he is a urogynocologist who specializes in I.C. His philosphy is to treat the whole person in the least invasive way possible and in work to eleviate the pain as well as other I.C. symptoms. People come from across our state to see him and yet he is always anxious to learn new treatment options. I'm taking information about a product that stimulates from the ankle supplied by a small company Uromedics. Some dr. would be above getting information from their patients but he isn't. He is the first dr. in my life that I feel listens to me. His staff is also terrific which is important since they are who I see most for bladder washes. Thanks for all of the helpful info. I want to make sure that I know exactly what to expect before I go through with this. My nurse had a frank discussion with me the other day about my expectations. I know this may not work and I know that it won't help the pain but it's still worth a shot.

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  • tigger_gal
    replied
    Rachel,
    OK I hate to do this but I need to ask.. Where is your temp interstim being done at.. the hospital or the dr's office? If it is being done in the dr's office I would not do it.. (I have the interstim) When the wires are placed Dr's put you in twilight thats an anstisia that pretty much knocks you out...(not a local, a local they use for stitches) but in twilight, if they ask you a question you can answer... a local may not numb you far enough down and you may feel the pain.

    The temp implant you can not shower at all your wires will all be out side your body and taped up your back...
    My biggest problem too was the urgency and frequency. my urgency disabled me when I had to go it was a cold numbing feeling doubled over in pain couldnt think couldn't move feeling.. it was horrid... the interstim stopped that. and has helped my frequency.
    There are still times with the interstim that I don't feel empty, I think thats just part of IC, but, there are alot of gals, that interstim has helped with rentention thankfully. It also did not help with spasams, don't know about any other interstimers that it has. Also I want you to know that interstim will not help you with the pain.
    You recovery will depend on how you feel after the trial its a couple days but you have to turn the box off when you drive. After the implant if you decide to to this your recover time to heal completely inside and out is 4 to 6 weeks..
    Brat

    if you have any questions please contact me.. [email protected]

    Leave a comment:


  • rachelm
    replied
    Tami, you had some great questions. I'm right there with you. I'm scheduled to have my trial next Tu. 24th. I'm unique though, in that my dr. is only planning on doing the trial and not the perm. implant. I have really bad flares like now but then I get much better so I don't want it permanently implanted. My biggest prob. is retention and urgency. I never feel empty even after I've cathed. I have really bad spasms which my dr. said should be helped by the stim. I have been wondering about the shower and anestesia situation as well. My dr. said that I will be awake but he will give me a local so that I can tell him when he's got the right spot. I wish that I could go off of my pain meds too but for now I'll use them while I'm in pain and taper off as I start to feel better in a few months.

    I'm really nervous about the procedure and am wondering how many days it will take before I can go back to work, drive etc. I've been on med. leave for 3 wks because of the flare and I'm really anxious to get back as soon as possible.

    I see my dr. again on Wed. maybe he will have more info for me then.

    Leave a comment:


  • tigger_gal
    replied
    Tami my apoligies for not responding to your post sooner I have had some maror things going on and Debbies death relly hurt me deeply..

    Ther interstim helped greatly with my urgency and cut my frequency nearly in half, I still have pain, unfortunately it is not designed for pain management so I do take pain meds.
    It depends on you frequency and urgency and how you feel about getting the interstim. I know I would do it again in a heart beat.

    find out if there are possible side effects on just stopping the pain meds first, you can ween your self off them, and take them when you need them, I have taken ultra set, darvocet and vicodine for pain.
    The interstim won't control flares it is for frequency and urgency I hope your doctor explained this to you, it also is not for pain, I don't want you going in to get the interstim and thinking that you will not have any more pain, because that is not true.
    my trial was great the next day i turned me on :lmao and felt rleif of the freq nad urgeny that day I was not miserable at all just the surgery pain for a couple days, and like teri i hung and taped my wires for my shower.
    I sat pretty much on my hip and slept on the side the wires were not on. I can't say that my bowl movements changed with the interstim. I contiued all my meds and when I had my trial I was out cold, I recall a coulpe things but NO PAIN. I took my reg meds during the trial stage and an antibiotic.
    Brat

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  • Tami Stambaugh
    replied
    Thanks a bunch Jess and Teri. I am trying to cut down on my meds. My doctor told me Tuesday that He wanted to do a liver test to make sure the acemephetin is hurting my liver and also said he might change my pain meds. after we get everything regulated. Something that last longer. He mentioned getting back on the oxycotin but I have already taken that and stopped it about 5 months ago. I really don't want to take that-----------any suggestions would greatly be appreciated.

    Love and hugs,

    Tami----Have a great weekend, I have a very busy one doing Great Pretender's for my daughter's Project Graduation. I am in 3 acts---pray that I am not in a huge flare----I don't want my stomach to look like I am pregnant!!!!!!!!!!!

    Leave a comment:


  • ICNJess
    replied
    Hi Tami,

    Well during the trial I wasn't miserable. I could deal with not showering for the relief I was feeling. You can shower, but you have to be very careful so that you don't get the wire wet. I preferred the sponge bath in that regard because that way I wasn't risking getting the wires wet.

    About pain meds, before the surgery I didn't take any because I'm pretty allergic to narcotics, so I just suffered with pain. I went into a remission when the Interstim went in, but I did take a low dosage of vicodin every 4 hours after my surgery because of incision pain and all that stuff.

    For the surgery, it's hard to say about the med they gave me...the surgery is like a blur, but I do remember all of it--does that make sense? I was awake enough to remember it, just not awake enough to remember it vividly. When they first administered the med I was laughing hysterically at God knows what. I felt pretty tired when I got into the operating room, and the nurse said I could close my eyes and give in, but I wasn't sleepy enough to sleep, and the doctor needed my answers anyway.

    Love,
    Jess

    Leave a comment:


  • Teri
    replied
    If you are having the staged trial you will beable to take a shower. You just can't get the wire wet....I draped it over the shower and taped it so it wouldn't fall in.

    If you are having this done thinking you are going to get rid of your pain meds, DON'T cuz the only way it's gona happen is if there is a miracle.

    I went 4 years with the implant and of that 4 years it only worked for 18 months and I was NEVER able to go off my pain meds....infact, I had a revision after 2 years and ended up in twice as much pain. All the bladder tenderness is still there. The only difference is, if it works properly you will only have to pee 3 or 4 times a day.

    wishing you the very best~

    Leave a comment:


  • Tami Stambaugh
    replied
    Jess,

    Were you miserable the whole time??? How did you sit, sleep and did it help with you going to the bathroom doing #2? Did you have to get off you meds. before doing this? Where you sedated pretty heavily during it or awake some?? Did you have to take alot of pain meds. during those weeks?/

    Thanks a bunch!!!!!!!

    Tami

    Leave a comment:


  • ICNJess
    replied
    Hi Tami...

    Ohhh those three weeks (for me, don't ask) were hell about the shower situation. I have two words for you: Sponge Bath. We have one of those detachable shower heads, and that's how I washed my hair everyday. You cannot shower...and even after the implant you have to wait a few days. I remember my first shower after it all...ohhhh was that heaven on Earth!!!

    Love and luck,
    Jess

    Leave a comment:


  • Tami Stambaugh
    replied
    I was also wondering how you slept during the pre-innerstem trail??? I know that the lead is just taped on you and you have to be careful sitting and laying and everything elese because fo the wire and the box. What about a shower or a bath?? I surs can't go a week without one I think my family would run me out of the house.What did you do during that first week???If there is anything elese you or anybody else can think of tell me that too!!

    Thanks,

    Tami

    Leave a comment:


  • questions about meds. and flares before the inner-stem trail?

    Well like I stated earler I have my temporary scheduled for March 1, and the permanent one on the 8th. Anyway, my questions are have any on you maybe went through a couple of weeks that you felt some better but still have to take your pain meds. daily anyway?? I have been thinking well the last couple of weeks haven't been to bad and under control with meds. maybe I should wait the wham out of nowhere a huge flare came on for several days, then I think yea I am doing it. My other questions are if you are on daily pain meds. so that your IC doesn't get into a flare that would get out of hand and then you do the inner-stem how do you go about reducing the meds you are taking without going through some kind of withdrawls. I have heard horrible stories of withdrawl. I want to get to were after the inner-stem is put in that I won't have to take on a daily basis just when needed. Has anyone went through this and how did it effect them?? Also, since I have been feeling a little better I am thinking of not going through the procedure. I know just as sure as I change my mind a flare from hell well come on. ALso I always have tenderness to the touch in my bladder/pelvic area 24/7 and my lower back hurts all the time. I had to have a dexzscan X-Ray done last week to make sure my left hip and lower spine was o.k. They called me back and said that my hip area looked great but that my lower spin is thinning,it is called ostopini or something like that. Just my luck. I really don't like having to take pain meds. ever day. I just think with the innerstem it would cut down on my pain meds and would feel better. I am really ready for a better quality of life. I am sick and tired of feeling like s--- all the time. I would appreciate any thoughs or experiences on this. I wonder if the doctor weens you down from you meds or what?? Please let me know if any of you has had or have this similar problem. I as starting to get nervous and scared.

    Thanks for listening

    Tami hi
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