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need more PTNS, but doc won't give - HELP!

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  • need more PTNS, but doc won't give - HELP!

    Hi everyone. I am writing because I've been not doing so great lately. For three months I was doing weekly PTNS treatments and was feeling quite a bit better. But now I'm on maintenance - every 2 weeks and I'm not doing so great. It sounds like my doc doesn't want to keep giving weekly treatments forever and the only way he will let me do them at home is if I can get insurance to cover the unit which they won't.

    I remember reading an article by Jill saying she made a TENS unit into a PTNS unit. Does anybody know how I would go about doint that? And how would i know it's the right voltage or whatever. Also, has anybody tried just using a regular TENS unit and putting the pads on the area where the PTNS pin usually goes on the ankle and see if it works at all?

    Thank you!
    Update! Feeling much better these days and no longer on any meds!

    Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

    Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

    Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

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  • #2
    Hi Musiclover,
    I am sorry to hear you are not doing so well. I just had my 9th ptns treatment last week. I thought it was helping some but then I would have days where my frequency was back up again. My dr said if it is determined it works for you then he doesn't have you come in for another treatment for 6 weeks. I get the feeling from what he has told me about success with other patients is that if it works for you, you should not need to come in every week after the initial 12 week period. He told me he had a patient who is 72yrs old and she comes in for maintenance 3 times a year. I am not sure if she has ic or an overactive bladder. I am getting discouraged though since my good days have not been consistent. I had one day last week where I was drinking more fluids than I usually do and did not have to use the restroom for 3 hours! It was so wonderful- I felt like a normal person that day. Maybe your dr is concerned your insurance wont pay for it every week after the 12 week treatment. My insurance said it is an eligible expense before I started but now they need more details before they will pay anything. I hope you can get it straightened out- its awful to find something that helps and then not be able to continue it. Keep me posted- take care.

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    • #3
      Hi Doreeni. It sounds like PTNS has been working for you. I also had ups and downs but felt it worked since I also had a few times where I could hold it for more than three hours which is not possible usually. It also cut down the constant irritation feeling. Every 6 weeks sounds like a long time. My doc does 12 weekly sessions then bi-weekly then monthly. Going straight to six weeks doesn't sound right to me.

      So I got my doctor to agree to a few more weekly sessions but I have an appt Thursday and I have a feeling he won't continue with PTNS weekly forever. He wants me to do interstim but I'm hesitatant since PTNS which is less invasive seemed to start to get me on track. I feel if I could keep that up longer I would improve. I hate the thought of interstim sugery when I'm so busy lately with work, wedding planning and my wedding shower and bachelorette party are coming up and then my wedding in August.

      Well keep me posted with your progress. I hope you start seeing steady improvement!
      Update! Feeling much better these days and no longer on any meds!

      Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.

      Things that helped me the most: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day).

      Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax, Hydroxyzine (50mg), Alesse Birth control (this helped my period flares when my symptoms used to be bad), PTNS (I think this helped).

      [/COLOR][/SIZE][/FONT]

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      • #4
        Do you know the cost of this treatment? I think it's the one I was recommended today. It has a needle that goes into your ankle right?

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