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  • #1

    PTNS - What level or # you are at?

    Hi everyone,

    I'm currently sitting in the doctors office hooked up to the Urgent PC unit for my first PTNS treatment...I have about 15 minutes left I think. We got the machine up to level or number 8. He said 15 is the highest. What number did you have treatment at? The 8 is a little uncomfortable and my foot feels numb so I'm sure that means its working wooo..I wanted to go as high as I could handle. Honestly this is the least invasive and most relaxing treatment I have had so far! He said I can sign up for 6 to start...12 total. I read you won't know if it even starts working until the 6th time so not sure why I wouldn't only schedule 6. Anyway just wondering when anyone started noticing a difference and what # you were at in treatment. Thanks!
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  • #2
    Im contemplating starting PTNS in the near future. It was mentioned to me as an option though the specifics havent been discussed as of yet. Is it painful? Are there risks? Is it done in your Drs office or in a PT office? I read that treatment starts with 30 minutes once per week for 12 weeks and then depending on the success further treatments are scheduled as maintenance. Ive read that the success rate is reported as being between 70-80%..that has me leaning towards giving it a try.

    Any info you can/are willing to offer would be most appreciated.
    Hope this finds you well.

    Diana
    (\__/)
    (o.O )
    (> < ) This is Bunny. He's on his way to world domination.

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    • #3
      More is not better on PTNS.... so don't try to go as high as you can. Really it's about reregulating the nerve... so it should NEVER cause pain and discomfort. Perhaps some tingling and, of course, you know the needle is in the right place if you've gotten the big toe to flex downwards! I was one of the very first PTNS patients back in 1993 with the doctor who invented it! I had my first two hours without pain at week 4.. and my first day without pain at week 7 or 8.. so good luck to you!

      Diana..

      No, it isn't painful and if it is, the unit needs to be turned down. IT can be done at any office.. and I was even taught to do it at home. Super super easy therapy... much less risky and expensive than going the much more invasive Interstim route! Definitely worth a shot!

      Jill O.
      ICN President & Founder
      Would you like to talk with someone about your IC struggles? The ICN now offers personal coaching sessions that include myself, Julie Beyer RD on the diet and Dr. Heather Howard on Sexuality. http://www.icnsales.com/icn-personal-coaching/

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      Please remember that the information on the ICN is provided with the understanding that ICN, its founder, staff, volunteers, and participants are not engaged in rendering medical or professional medical services. We cannot and do not give medical advice. Only your personal physician can do this for you.






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      • #4
        Thanks for the info, Jill.


        Diana
        (\__/)
        (o.O )
        (> < ) This is Bunny. He's on his way to world domination.

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        • #5
          I saw the Urgent PC rep last week and she said that the most recent research has shown that the toe movement is no longer necessary to show if it's a "good" treatment. She said any tingling or numbing sensation on the bottom of the foot is sufficient, even if it's just in the bottom of the heel. She also confirmed that it's not about the number setting. She said most patients like to feel it's doing something so generally want it higher (as long as not uncomfortable for 30 minutes), but any level of vibration is fine.

          I've had 6 treatments so far and while my frequency hasn't gone down much, I'm voiding without straining & slightly larger volumes, which is more comfortable.
          Kadi

          -------------------------------------------------------------
          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          ------------------------------------------------------


          New favorite quote: "God gives us only what we can handle. Apparently God thinks I'm a bad-ass" ~Author Unknown
          Source - Pinterest
          "

          Current treatments:
          -IC diet
          -Elavil 50mg at night
          -Continuous use birth control pills (4-5 periods/year)
          -Heparin/Marcaine/Sodium Bicarb home instills at night 3-4x per week, more often if needed
          -Pyridium if needed,
          -Pain medicine at bedtime daily, as needed during the day several times per week
          -Antibiotic when doing an instillation to prevent UTI
          -Colace & SmartFiber to treat chronic constipation from meds, Fleet enema as needed
          -Dye Free Benadryl 50 mg at bedtime
          -"Your Pace Yoga: Relieving Pelvic Pain" dvd, walking, treadmill at gym
          -Managing stress= VERY important!
          -Fur therapy: Hugging the cat!

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          • #6
            Hi everyone, This urgent PC sounds promising! Thx for the info. A doc mentioned it to me recently as an option,and I want to try it, especially since my issue , constant urge with hesitancy is awful. The urge returns shortly after peeing. Ive ha IC issuues for 7 years but it usually calms down on and off.
            The urge currently is incredibly strong, I think (as does one doc agrees) due to a pain pump whicg was placed too near my bladder- (im very small built so there wasn't much room inside.. Pump is for pudendal/pain sitting issues) But ever since placement the urge is worse!
            Urologist offered urgent PC and said lately they've had more success.
            Can anyone else with urge/ hesitancy issues comment? Thx for this info!

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            • #7
              Re: PTNS - What level or # you are at?

              hi im seeing Dr Margolis today. But hubby feels its not a good idea for me to try instills--- ie risk vs benefit... Last time I had instills was several years back with a different doc but I had no change, so hubby is assuming this won't help either, but instead flare my urethra, (very possible!)
              Does anyone know if Dr Margolis offers Urgent PC? --- It's less risky and Ive always wanted to try it.
              I will add tho That I had an interstim test back in 2006, -with no change in symptoms. tho technology has improved a bit since then.
              Anyway does that mean I'm less likely to respond well to Urgent PC?.
              Thx very much!

              Comment

              • #8
                Re: PTNS - What level or # you are at?

                Jill,

                I have a doctor doing PTNS in Indiana, near me. I came to this board to see what the treatment was all about.
                I am thrilled to hear it helped your pain.
                Do you still do this, and did it lead to any remission?
                Thank you for any help.

                Jen

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                • #9
                  Re: PTNS - What level or # you are at?

                  If you go to the urgent pc website, it gives you a list of providers in your area. I just started treatment (had 2 so far) with Dr. Phillip Bracken. He is located in Hamilton, NJ. The practice is called Urology Care Alliance, and phone is 609-588-0770. From your post, I think you must live in South NJ? I used to see Dr. Karolyn Echols who I believe was another doctor in Dr. Margolis practice? She was awful!!! I had to wait years to try this treatment do to most insurance companies refusing to pay for it. They claim it is considered experimental and would not cover the cost. It was way to expensive out of pocket (over $700 per treatment for a minimum of 12 weeks!). So far it is too early to tell - nothing has changed yet. Hope this helps!!

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                  • #10
                    Re: PTNS - What level or # you are at?

                    Thanks for the info Elemar!

                    I'm in Indiana (jen100).
                    I had my first PTNS session 2 days ago.
                    I have to keep a bathroom log; so this will help me SEE better if it reduces frequency. Would be a miracle if it reduced pain.

                    I will try to post final results (about 6 sessions).

                    P.S. It doesn't hurt. Feels weird.

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