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  1. #1
    ICN Member
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    Sep 2010
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    PTNS - Starts 22 June 2011

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    My doctor has suggested PTNS. This is scheduled to start on 22 June 2011. I just finished 6 rescue instillations and can see some improvement. After describing my symptoms, the dr. suggested we start a once week for 12 weeks PTNS. He also gave me a brochure!

    Not quite sure if it will work but I am still willing to try all that is suggested.

    Thanks to all the members. Your love, encouragement, and warmth continues to provide strength for the journey.

    Praying for the cure

  2. #2
    ICN Member
    Join Date
    Oct 2005
    Posts
    121
    I just wanted to tell you - good luck! I hope it's helpful. Keep us posted.
    Conditions:
    IBS 4/04; IC 8/05; Vitamin B-12 Deficiency 7/06; Asthma 9/06; Citrus, MSG, Sulfate/Sulfite, Nitrate/Nitrite, Sodium Benzoate Allergy diagnosed 9/06; Fibromyalgia 6/07; Pelvic Floor disfunction 2007; Hysterectomy 10/08; Fallopian Tube Cyst removed 5/10; Chronic Diarrhea since 12/10 ; Ulcerative Colitis 4/12

    Medications
    Elmiron 3x day
    Trazadone at bedtime
    Tramadol as needed for pain
    Monthly B-12 injections
    Continuous Birth Control (even though I had a hyst, to control cysts)
    heating pad, hot epsom salt baths, strict IC diet
    Interstim implant 9/11
    Ulcerative Colitis Meds - Remicade, Azathioprine, Lialda, prednisone several times a year

    Failed Bladder Treatments
    Lyrica, Elavil, Detrol, Detrol LA, Ditropan, Sanctura, Flomax, Prelief, Pyridium & Urelle (allergic!), Lidoderm patches, long term antibiotics - Macrobid and others, instillations (ouch!), CystaQ, pelvic floor therapy, fulguration, bladder injections, bladder stretching

  3. #3
    ICN Staff ICNDonna's Avatar
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    Mar 2000
    Location
    Oregon
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    42,123
    I hope it works for you.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Sub-types https://www.ic-network.com/five-pote...markably-well/

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/




    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.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  4. #4
    ICN Member
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    Apr 2011
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    17

    Had two treatments

    I have had the first two of the twleve nerve stimulations; don't know yet, but my fingers are crossed. Good luck!

  5. #5
    ICN Member
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    Dec 2010
    Location
    Athens Alabama
    Posts
    664
    Hope all works out for you.
    <center>
    <a href="http://s1086.photobucket.com/albums/j441/linda5552/?action=view&amp;current=Picture005.jpg" target="_blank"><img src="http://i1086.photobucket.com/albums/j441/linda5552/th_Picture005.jpg" border="0" alt="Photobucket" ></a>
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  6. #6
    ICN Member
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    Apr 2011
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    17

    thanks

    Thanks, Linda!

  7. #7
    ICN Member
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    Sep 2010
    Posts
    207
    Unfortunately, my health insurance (FED BC/BS) will not pay for PTNS. However, they are willing to pay for Interstim Therapy.


    So tired.....


    I am a recovering addict and PTNS is the most logical for my IC and my recover. I spoke with a BC/BS rep and was instructed on how to submit a pre-determination packet to obtain waiver. Uuugh!!!

  8. #8
    ICN Member QueenMellyBee's Avatar
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    Sep 2011
    Location
    SC/NC
    Posts
    52
    Passion 4 Life......curious what happened in your situation here. My husband has Federal BCBS, and has asked me about switching from my regular BCBS (through my job) to his insurance, since my BCBS has the worst Rx coverage EVER! I swear everything I get prescribed is $50-180
    But if you're saying that Fed BCBS doesn't cover PTNS, than I don't know that switching will be worth it to me on yet again another level.

    Did yyou get a waiver afterall? Did you seek other treatment? I personaly would LOVE to be off my litany of meds, and do something else too. Interstim is not a route I want to go. Just curious what happened in your situation. Hope you share

    Dx'd IC : 9/2010 Dx'd PFD : 4/2012

    Currently on:
    *Back on Elmiron [100mg] + *Elmiron/Bicarb/Lido INSTILLS 2x weekly----*Nortrel Birth control--*MagOx400--*Nitrofurantoin (1 after intercourse to avoid UTI's)--*Prelief--*Prosed--*Clonizapem--*Flexeril 10mg--*Zyrtec
    *PT for IC&PFD - Both hands on/all-up-in-there approach, and the breathing techniques/stretching approach--- helpful, but difficult to continue at home and make time in daily life

    Didn't work:
    *Nexium ,*Sanctura , *Enablex ,*Atarax ,*Allegra,*Arginine
    *Elavil (2 pills and I passed out, cold on the floor....)
    *Hydrodistention - Done by the best Dr, but did not prove to relieve any pain over long term at all
    *Gabapentin (DANGER - Caused suicidal thoughts, inconsolable crying & erratic behavior when mixed with Clonazepam & Flexeril)

    Hair loss/thinning/breakage Elmiron 300mg daily caused to my hair.... it is NOT a slight side effect

  9. #9
    ICN Member
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    Sep 2010
    Posts
    207
    Hi QueenMellyBee


    I did not get a waiver. I did not have the energy to fight another battle. Instead I opted for the Interstim Therapy. Personally, I am grateful for the Interstim Therapy. It was not without some inconveniences but today I am much better than I was last year at the same time. The device has been turned up four times!!! But I do feel better. My meds and diet remain the same but my frequency/urgency has returned to a more normal state. My mornings are still better than my evenings but it is what it is....

    I am able to work more and enjoy some semblance of a normal life.


    Pray everything works for you!

  10. #10
    ICN Member bamagirl's Avatar
    Join Date
    Apr 2005
    Location
    Mathews, AL
    Posts
    257
    Passion for life,
    I have had and Interstim for 8 years now. I turned mine off after about 1 year because I just got irritated because I didn't think it was working. I went back to the doctor that put in my Interstim who is 3 hours away. She wanted me to give it another try. My problem now is that if I turn it up enough to get relief for my bladder the stimulator affects my bowels. I turned it back down for now. Did you have to go up on the stimulation slowly or did you just move it up a few notches and have no problems?
    GO TO: IC-talkblogspot.com
    [B]CURRENT DIAGNOSES AND MEDICATIONS
    lumbar pain,depression,periphreal neuropathy,Insomnia,IBS
    for pain-tramadol ER 200 mgs (once a day),for break-thru pain-talwin(as needed),for periphreal nueropathy-Lyrica 150 mgs (3 times a day),for insomnia-ambien10mgs,for hot flashes- estradiol (estrogen),for IBS-Questran (one packet a day),for depression-paxil (80 mgs)=two 40 mgs a day

    SURGERIES-
    *Bladder and Urethra removed (Radical Cystectomy)-August 2012
    *Vaginal Prolapse surgery, ovaries removed and Interstim removed 2012June 2012
    *Cauterization of the bladder lining-1992-i don't know the technical term
    *Bladder distension and cauterization-1992
    *Cystocopy-1992
    *Gallbladder removal-1995-gall stones
    *Hysterectomy-1998-still have ovaries
    *Interstim trial-2002
    *Interstim implant-2002
    *Trial pain pump did not work
    *spinal injections-2009 (once with 1 injection and a second time with 6 injections)

  11. #11
    ICN Member Madi's Granny's Avatar
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    Feb 2007
    Location
    Oklahoma City, Oklahoma
    Posts
    134
    I've found that it is much easier to go up slowly. I tried going up several notches at a time and it cause me pain. I went back down to where I was and went up slowly and had very little if any pain. I don't think my sacral nerve like being hit with high stimulation at one time. I even turn one side up at a time. Usually give it 2 or 3 days between.

  12. #12
    ICN Member
    Join Date
    Sep 2010
    Posts
    207
    I turned up the device; however, I still did not get the results I expected. I returned to the doctor, and thankfully, the company rep was in the office. He broadened my signal across the nerve bundle. Now the new program and the setting appears to give me better days. I still have IC therefore I have to watch my diet, relax as much as I can, and take the prescribed meds. But all in all I am much better today than I was a year ago this time. The company reps said that the company considers the device a success if there is a fifty percent reduction in symptoms. My symptoms have reduced by at least fifty percent.


    I pray everything works out for you!

  13. #13
    ICN Member bamagirl's Avatar
    Join Date
    Apr 2005
    Location
    Mathews, AL
    Posts
    257
    I have one of the first Interstim's so I can't do as much as you can with the stimulator. I wish I had more choices but all I can do is go up or down.
    GO TO: IC-talkblogspot.com
    [B]CURRENT DIAGNOSES AND MEDICATIONS
    lumbar pain,depression,periphreal neuropathy,Insomnia,IBS
    for pain-tramadol ER 200 mgs (once a day),for break-thru pain-talwin(as needed),for periphreal nueropathy-Lyrica 150 mgs (3 times a day),for insomnia-ambien10mgs,for hot flashes- estradiol (estrogen),for IBS-Questran (one packet a day),for depression-paxil (80 mgs)=two 40 mgs a day

    SURGERIES-
    *Bladder and Urethra removed (Radical Cystectomy)-August 2012
    *Vaginal Prolapse surgery, ovaries removed and Interstim removed 2012June 2012
    *Cauterization of the bladder lining-1992-i don't know the technical term
    *Bladder distension and cauterization-1992
    *Cystocopy-1992
    *Gallbladder removal-1995-gall stones
    *Hysterectomy-1998-still have ovaries
    *Interstim trial-2002
    *Interstim implant-2002
    *Trial pain pump did not work
    *spinal injections-2009 (once with 1 injection and a second time with 6 injections)

  14. #14
    ICN Member Madi's Granny's Avatar
    Join Date
    Feb 2007
    Location
    Oklahoma City, Oklahoma
    Posts
    134
    I have an older interstim too. Mine was placed in 2007. I can only turn mine up, down, on or off. The reprogrammer at your doctor's office can do what passion4life's reprogrammer did to hers. My reprogrammer has done it to mine. I can hardly wait until I can have mine changed over to one of new ones. They have 4 programs you can try. My reprogrammer says that they are so much easier to program than these old ones are.

  15. #15
    ICN Member bamagirl's Avatar
    Join Date
    Apr 2005
    Location
    Mathews, AL
    Posts
    257
    Quote Originally Posted by Madi's Granny View Post
    I have an older interstim too. Mine was placed in 2007. I can only turn mine up, down, on or off. The reprogrammer at your doctor's office can do what passion4life's reprogrammer did to hers. My reprogrammer has done it to mine. I can hardly wait until I can have mine changed over to one of new ones. They have 4 programs you can try. My reprogrammer says that they are so much easier to program than these old ones are.
    I got mine in 2002. I have a new remote but not the ability to changed anything. I won't have the new capabilities until I get a new battery. The good thing about the new one's is that they are smaller and resemble a cell phone. I love the new remote but I just wish I could change from the 1st lead 1-4 electrodes and the 2nd lead1-4 electrodes. I have 2 leads just like you but I can't change from left lead to right lead or vs. Maybe I understood that part wrong.
    GO TO: IC-talkblogspot.com
    [B]CURRENT DIAGNOSES AND MEDICATIONS
    lumbar pain,depression,periphreal neuropathy,Insomnia,IBS
    for pain-tramadol ER 200 mgs (once a day),for break-thru pain-talwin(as needed),for periphreal nueropathy-Lyrica 150 mgs (3 times a day),for insomnia-ambien10mgs,for hot flashes- estradiol (estrogen),for IBS-Questran (one packet a day),for depression-paxil (80 mgs)=two 40 mgs a day

    SURGERIES-
    *Bladder and Urethra removed (Radical Cystectomy)-August 2012
    *Vaginal Prolapse surgery, ovaries removed and Interstim removed 2012June 2012
    *Cauterization of the bladder lining-1992-i don't know the technical term
    *Bladder distension and cauterization-1992
    *Cystocopy-1992
    *Gallbladder removal-1995-gall stones
    *Hysterectomy-1998-still have ovaries
    *Interstim trial-2002
    *Interstim implant-2002
    *Trial pain pump did not work
    *spinal injections-2009 (once with 1 injection and a second time with 6 injections)

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