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im scared...

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  • im scared...

    hi everyone...well i finally have an apt. w/ my uro on monday and i am soo scared...I really have alot i need to get out to talk about but i just feel like everytime i see him its like i am brushed off..i like him as a person and he is nice but i dont think he actually listens to interstim is in my left hip and i get shocked in my left leg from thigh to toes and also *TMI* the left side of my womanly area...i asked about this when it was first put in and i was told it was normal several i have just lived w/ it ...UNTIL my new dr. told me it wasnt normal and also a chirprocator i had to see..he was working on my back and had his hand on my left hip and could feel it shoking me and he told me it could cause long term i dunno i am just really nervous bc i dont think he's going to listen to me...i just feel at such a lose bc i have tried everything under the sun and nothing works for what happens if he will take it out...start back at square one?? and also if he wont listen then what...he is the only IC dr. around and is very well known... sorry for the rant..i guess i just needed to get it out..

    Judge me and I'll prove you wrong!!

  • #2
    Not sure if you're the assertive type, however since you're paying this Dr big bucks to help you, you need to inform him from the start of the appt that you expect him to listen instead of brushing you off. It might be that he doesnt realize he's coming across this way and he just needs a reminder. Regardless of why his mannerisms appear this way to you is irrelevant, so speak up for yourself and tell him how he's coming across to you. Also, dont let him leave the room until all of your questions are answered to your satisfaction. It might help if you write all of your questions and concerns on paper and take this to your appt. As he answers each question, write down his response. This will give you something to refer back to should you get home and not remember all that the Dr has told you.

    Feel better, dear.
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.


    • #3
      if this has been happening from the get go it is 1 of 3 things, a bad generator, bad wires, or doctor error. Did this happen during the trial? if so your doctor can be in trouble for going a head with implanting it and giving you false information by telling you this was "normal" or. Did you fall and it start shocking you? then at that point it would be the generator or the wires.
      I kinda of played the reprogram game with my uro's nurse 2 different times and said this is not right, it keeps going in the generator and shocking me. Then having patches of tingles that would run thru me. The one nurse told me it was not. I would only feel the stimulation where the leads were, I have had it for four years, I went in maybe a total of 6 times for a reprogram. I told her I was very aware of that. Then another told me I needed to keep it on to feel it.. That is a HUGE NO NO more is not better, rule of thumb, is you do not need to feel it for it to work. Anywho I wanted to see the dr and they told me he was too busy. They sent me to the hospital for x-rays, by the time I got back the stimulation was sending pain down my leg, and shocking me. I pulled over, shut it off and I still felt it. Ok this is getting long huh? I cam home called and made an appointment, and was told I needed to see the nurse again not the dr. I asked for an email address and emailed the office manager . I got right in.
      I had me trial for my new stim on the 2nd and my implant on the 16th. I am having great success
      Make a list of questions. Ask them, and write down the answers. Tell him that you want this OUT NOW. If you want to go for another one thats up to you, and he will ask. If you don't tell him NO. If he tells you that you have to wait an unreasonable amount of time, tell him that it is unacceptable. Don't leave until you are satisfied with your answers and what he will do. remember you are paying him for medical advice, and this is what he chose as a career. It is your right to be satisified and it is his sworn duty to do so.

      Sending you great big hugs and keep us posted.
      'The will of God will never take you where the Grace of God will not protect you.'


      • #4
        thank you all so much for your replies....i really appreciate it...this has been happening since the beginning...and i was told that it was normal since then...i was also told that i needed to feel it for it to work...for some reason i clam up around him ..kinda like i feel hopeless bc he rushes through and blows me I am really goin gto try to get him to listen to me...I will let ya'll know what happens..thank you again for your help!!

        Judge me and I'll prove you wrong!!


        • #5
          Usually when I have trouble communicating with an inpatient or intimidating provider, I find it more successful to write down everything I want to say and either read it or have them read it in front of me. Another thing I've found VERY helpful is to tell the nurse how the dr. makes you feel. I know many times the nurse has let the dr. know how I'm feeling without making me sound like some nut job!

          Good luck. It's true we really must be our own best advocate.


          • #6
            I am one that has had problems with both of the InterStims I had. And I have to agree with the other doctors it is not normal for the shocking to be happening. You can look back at some of my post to see the problems I had.

            Also you do not have to feel the pulsating for the unit to work. I was always told this from day one and when mine worked right I did not feel it.

            The org. doctor who did mine also told me the shocking and toe curling I had was normal. I had to wait 8 months to find another doctor in the area to help me. I tried another and still had problems with it.

            Please dont feel like a loser because it might not work for you. I am in the same boat. And one day there will be something that will work for us. You dont want to cause any perm damage to your nerves and that is something that could happen should you keep your unit in and going. Stand your ground and be assertive, make him listen to you. Know one knows your body like you do....((((HUGS)))
            God grant me the serinity to withstand the days ahead!!!

            My myspace link...


            In Memory of My Father (Lawerence) 1/25/2007

            Interstim Sept 2001
            1st InterStim Removal May 2005
            2nd Interstim Implanted May 2005
            2nd InterStim Removed March 2007
            Hysterectomy 1999
            Tubes Tied 1997
            C-Section 1996

            Me and my kids

            Taylor (my daughter) Me and my daughter My son Cody and Taylor


            • #7
              I had a interstim in me and when I started having probems with my. My doctor and the rep would not listean to me and would not call me back. I got appt. with him and he said that he would do another revision. Along stiplothion that I would not call the office, the red and the company medtronic. So I decided to say goby and I would not be back ever a again. So I Got my doctor in Miami, Fl to take it out and he is know giving me my Botox injection. I will be prayer for you that everthing goes okay for you.
              I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.


              • #8
                Chloeiley, how are you doing with you interstim and doctor?

                Deborah Bush
                I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.