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  1. #1
    ICN Member emilyandlouise's Avatar
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    Jul 2011
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    New Jersey
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    PTNS - 2 weeks in - Please share your success

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    Well, I have had 2 PTNS treatments so far. I have to say it is the least invasive and painless treatment for this condition to date.

    After the 1st treatment I got my period shortly after. Now, ordinarily the week before my period and the week of my period is an IC nightmare with constant pressure and frequency. But, this month it was a breeze. Because of PTNS? I have no idea. It was also the most normal period I have had in months. The nurse laughed that the PTNS helped my period.

    I can't get excited yet. Because this week, after my period and after the 2nd treatment, has been rough.

    I'll keep you all posted. Tomorrow morning will be my 3rd treatment.

    I would LOOOOVVVEEE to hear anyone's success stories right about now with PTNS. Anyone out there?

    I must admit though - virtually painless and my insurance covers it 100% Nothing to lose. Give it a shot!
    My current regimen:
    Dancing, Laughing, Petting Emily and Louise - my shihtzus

    Tried and gave up on:
    Diazepam
    PFD
    Warm Baths
    Millions of supplements
    Elmiron instillations - did 5 weekly instills and did not help. Gave up.
    Oxytrol patch - no consistent relief after 3 weeks and very expensive
    Sanctura XR - tried for 6 weeks with no consistent relief
    Imipramine - tried for a week, but started to have a "hesitant" void - kind of twitchy.
    PTNS - doctor's office was disorganized, appts took hours and gave up after 4 treatments
    Vaginal valium suppositories - not as effective as taking valium orally
    Cystoprotek - ridiculously overpriced - taking same supplements from CVS
    Elmiron - 100mg in the morn, 200mg in the late afternoon - no results after 1 year
    Elavil - 25 mg at night- no consistent relief and 5 extra pounds
    IV Vitamin C - the only person with an allergic reaction to Vitamin C drips
    Hormones

  2. #2
    ICN Member
    Join Date
    Apr 2011
    Location
    Phoenix, AZ
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    I'd also like to hear some success stories. Nothing seems to be working for me and I want to try the PTNS. emilyandlouise, in order for your insurance to cover it did you need to get a pre-approval? I can't seem to find out whether or not mine will pay for any portion of it. If not, I am willing to pay out of pocket if it's not too outrageous. Does anyone know what it costs per session if not covered by insurance?
    Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

    Current medications/treatments:
    Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

    Previous medications/treatments:
    Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

  3. #3
    ICN Member emilyandlouise's Avatar
    Join Date
    Jul 2011
    Location
    New Jersey
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    242
    Hi Phoenix Girl,

    I know how you feel about nothing seeming to work. I was diagnosed last July and still trying to figure it out. I had my 3rd PTNS today and this time I could feel it traveling down to my heel. The nurse was happy about that.

    My doctor's office had to get pre-authorization for it and it took weeks. But, I got pushy and kept calling both the insurance company and my doc's office to make happen as fast as I could. Since my doc is in-network and for my particular plan I don't pay anything.

    Good luck - hope you can try it!
    My current regimen:
    Dancing, Laughing, Petting Emily and Louise - my shihtzus

    Tried and gave up on:
    Diazepam
    PFD
    Warm Baths
    Millions of supplements
    Elmiron instillations - did 5 weekly instills and did not help. Gave up.
    Oxytrol patch - no consistent relief after 3 weeks and very expensive
    Sanctura XR - tried for 6 weeks with no consistent relief
    Imipramine - tried for a week, but started to have a "hesitant" void - kind of twitchy.
    PTNS - doctor's office was disorganized, appts took hours and gave up after 4 treatments
    Vaginal valium suppositories - not as effective as taking valium orally
    Cystoprotek - ridiculously overpriced - taking same supplements from CVS
    Elmiron - 100mg in the morn, 200mg in the late afternoon - no results after 1 year
    Elavil - 25 mg at night- no consistent relief and 5 extra pounds
    IV Vitamin C - the only person with an allergic reaction to Vitamin C drips
    Hormones

  4. #4
    ICN Member
    Join Date
    Apr 2011
    Location
    Phoenix, AZ
    Posts
    228
    Thanks for the info! I finally got in touch with someone at Cigna who could give me an answer and they say they absolutely do NOT cover PTNS because it's "experimental in nature." I have no idea how they can say that with all that's been written about it and the seemingly high success rates, too. It seems like a lot of insurance companies cover it but for some reason mine won't. I asked about appealing a decision if the doctor would write a letter explaining why I need it (which, to me, is ridiculous. They can see all the treatments and medications I've had over the past year!). The woman on the phone told me I could submit a request for authorization but it would be denied. I then asked the doctor's office how much the procedure would cost out of pocket. They told me that it "could be up to $320" per session. Wow. I am going to see if I can get a discounted rate because the uro, at least, is in my network. Maybe they can negotiate something. I feel really nervous putting that kind of money out for at least 12 sessions, and then some, when I don't even know if I'd respond favorably to it but at this point I really am willing to try almost anything. I don't understand how I can be doing everything I'm supposed to with the diet, meds, relaxation, etc and still feel so crappy after almost a full year of treating it. It's really depressing and I'm exhausted from all of it. I see you tried Sanctura, too. I'm almost considering going back on it. Even though it caused some retention for me, it was relatively mild and I think it at least helped my bladder spasms better than any of the other OAB meds I tried.

    Please, if you wouldn't mind, keep us posted on your progress and overall experience with the PTNS. I am really anxious to hear how it works for you. Great, I hope!
    Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

    Current medications/treatments:
    Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

    Previous medications/treatments:
    Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

  5. #5
    ICN Member emilyandlouise's Avatar
    Join Date
    Jul 2011
    Location
    New Jersey
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    242
    That's awful that Cigna won't cover it. Why don't you call again and speak to someone else? I have noticed that insurance companies can be extremely unorganized and a different rep might have different info. Just make sure you get the name and reference number for your call.

    I'll keep you posted.

    I am very discouraged too. I have done so many things over the last 7 months and I'm still not in remission or cured. I am extremely strict about the diet and don't even stray a tiny bit. Funny - months ago my acupuncturist tested my urine and said it was way too alkaline. And I was having a terrible flare at the time. So, makes me wonder if the diet makes a darn bit of difference for me.

    But, I'm too scared to experiment with eating anything not on the safe list.

    One day we will figure this out.
    My current regimen:
    Dancing, Laughing, Petting Emily and Louise - my shihtzus

    Tried and gave up on:
    Diazepam
    PFD
    Warm Baths
    Millions of supplements
    Elmiron instillations - did 5 weekly instills and did not help. Gave up.
    Oxytrol patch - no consistent relief after 3 weeks and very expensive
    Sanctura XR - tried for 6 weeks with no consistent relief
    Imipramine - tried for a week, but started to have a "hesitant" void - kind of twitchy.
    PTNS - doctor's office was disorganized, appts took hours and gave up after 4 treatments
    Vaginal valium suppositories - not as effective as taking valium orally
    Cystoprotek - ridiculously overpriced - taking same supplements from CVS
    Elmiron - 100mg in the morn, 200mg in the late afternoon - no results after 1 year
    Elavil - 25 mg at night- no consistent relief and 5 extra pounds
    IV Vitamin C - the only person with an allergic reaction to Vitamin C drips
    Hormones

  6. #6
    ICN Member
    Join Date
    Apr 2011
    Location
    Phoenix, AZ
    Posts
    228
    Well, my new uro submitted an appeal to the insurance company telling them why he thinks it is medically necessary for me to get PTNS. What I find absolutely ridiculous and contradictory is that they cover InterStim 100%, which costs much more than a simple outpatient treatment. Plus, they are both nerve stimulation and yet Cigna calls PTNS "experimental" and says there is no evidence that it works. WTH? The good news is that it is "only" going to cost me $150/wk out of pocket to try it. I am really excited but I also don't want to get my hopes up too much in case it does nothing for me.

    emilyandlouise have you noticed any improvement yet?
    Diagnosed with IC in April 2011. Medications and IC treatments did not help, diagnosed with PFD in September of 2013. Still searching for answers as to why I have never-ending frequency/urgency issues.

    Current medications/treatments:
    Pelvic physical therapy, valium suppositories, b and o suppositories, acupuncture, probiotics, magnesium, epsom salt baths

    Previous medications/treatments:
    Elmiron, Hydroxizine, Elavil, VESIcare, Series of rescue instillations using Elmiron, water, lidocaine, & sodium bicarb and self-cathing with instills as needed, D-mannose, Glucosamine, Hyophen (generic Prosed), Colostrum, IC diet, PTNS, chiropractic treatments, Desert Harvest Aloe Vera, CystoProtek

  7. #7
    ICN Member emilyandlouise's Avatar
    Join Date
    Jul 2011
    Location
    New Jersey
    Posts
    242
    Hi Phoenix,

    Hard to say about the PTNS at this point. I have had 5 weekly treatments, but the last two were spaced 2 weeks apart because I couldn't make it to the doctor. And today's appt has to be rescheduled too. So, I'm now skipping treatments, which I'm sure is not a good thing. I thought I was doing better after the 2nd one, but then got my period and it all went downhill as usual for that time of the month.

    I'm going to stick with it, though. It's covered by my insurance 100% and not invasive at all. So, what's not to like?
    My current regimen:
    Dancing, Laughing, Petting Emily and Louise - my shihtzus

    Tried and gave up on:
    Diazepam
    PFD
    Warm Baths
    Millions of supplements
    Elmiron instillations - did 5 weekly instills and did not help. Gave up.
    Oxytrol patch - no consistent relief after 3 weeks and very expensive
    Sanctura XR - tried for 6 weeks with no consistent relief
    Imipramine - tried for a week, but started to have a "hesitant" void - kind of twitchy.
    PTNS - doctor's office was disorganized, appts took hours and gave up after 4 treatments
    Vaginal valium suppositories - not as effective as taking valium orally
    Cystoprotek - ridiculously overpriced - taking same supplements from CVS
    Elmiron - 100mg in the morn, 200mg in the late afternoon - no results after 1 year
    Elavil - 25 mg at night- no consistent relief and 5 extra pounds
    IV Vitamin C - the only person with an allergic reaction to Vitamin C drips
    Hormones

  8. #8
    ICN Member ABliske's Avatar
    Join Date
    Aug 2006
    Location
    Santa Cruz, CA
    Posts
    1,005
    Emily,

    How are you doing now? I want to try this when it is covered by my insurance.
    Annie

  9. #9
    ICN Member glitteringglory's Avatar
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    May 2008
    Location
    Charlotte, NC
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    85
    I hate to post this, but just to let you gals know, I religiously did ankle stim for something like 8 weeks (however long the weekly sessions last). It didn't help me. But perhaps it will help you (I will hope with you that you are different than me). I sympathize, cause nothing seems to work for me either! It is VERY frustrating! *sigh*

    Check me out on facebook: http://www.facebook.com/glory.ic
    Diagnosed in early 7-2008 w/ IC: glomerations, mucosal cracking, & crystal embedding in the trigone. First cystoscopy & hydrodistention 7-2008
    Fervent prayer to God-I'm seeking divine healing on God's time table-it hasn't happened yet but I trust in Him for deliverance!
    Tried: Hydroxyzine HCL 50mg-I was a zombie! ,Took 300 mg Elmiron daily (over a year later), Instills, Amitryptiline, Cymbalta, Acupuncture, Herbs & marshmallow root tea, Hydrocodone than oxycodone for pain, Tramadol, Soma, Phenazopyridine (pyridium), MSM gel
    Still taking: Gabapentin (3 pills each night-300mg each), Melatonin (natural supplement)
    The latest, trying to cut out wheat & sugar to see if it helps ( I am desperate to find something-other than meds)! I just got off of a oxycodone habit that I originally was using to try & kill pain to function. I believe I had Opioid-induced hyperalgesia! My pain is not much worse giving up the pain meds after taking them for 4.5 years...it's about the same! It was a vicious cycle!
    IC runs in my family-My aunt has the same condition. The women on my maternal side have frequency issues. I have had frequency for many years. The pain started in December 2005 after I was in a car accident. Other : Hip disease (legg perthes as a child-resulting in a damaged femoral head), I had total hip replacement on my right hip in April 2010 at the age of 34. Had a hysterectomy in October 2010 due to pelvic pain & an unusual uterus.

  10. #10
    ICN Member
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    Dec 2012
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    Peoria Illinois
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    Quote Originally Posted by glitteringglory View Post
    I hate to post this, but just to let you gals know, I religiously did ankle stim for something like 8 weeks (however long the weekly sessions last). It didn't help me. But perhaps it will help you (I will hope with you that you are different than me). I sympathize, cause nothing seems to work for me either! It is VERY frustrating! *sigh*
    I was just wondering what they actually do for the ankle stim. My urologist wants to try this and if it is not successful we are going to do the surgery for the interstim. I just don't know what to expect with this at all. So far I have responded very little if even at all to the treatments we have tried. She told me I am in the severe stage and it will keep getting worse. I keep thinking to myself it gets worse....how could it possibly be worse than it is right now! Have you found anything that has helped you?

  11. #11
    Support Leader kadi's Avatar
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    California
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    I've only had one treatment so far. The nurse was happy that my heel felt like it fell asleep (not the pins & needles part, just numb) & said that was a good sign.
    I'm pretty desperate right now. My pain level is spiking up & down all the time.

    Right now, we're also trying an estrogen/testosterone ointment for vulvar vestibulitis. It hurts like crazy to put it on. The dr said as it works, it should stop hurting so much. I'm kind of overwhelmed. Put a heating pad on my stomach last night and an icepack well, below that, afterwards last night, but still woke up in miserable pain at 3am. And now, off I go to work. Sigh. I hope this gets better soon! Am wondering if I should cancel my summer plans. I've not had a flare this long or bad since I first got IC almost 10 years ago.
    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!

  12. #12
    ICN Member
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    Quote Originally Posted by kadi View Post
    I've only had one treatment so far. The nurse was happy that my heel felt like it fell asleep (not the pins & needles part, just numb) & said that was a good sign.
    I'm pretty desperate right now. My pain level is spiking up & down all the time.

    Right now, we're also trying an estrogen/testosterone ointment for vulvar vestibulitis. It hurts like crazy to put it on. The dr said as it works, it should stop hurting so much. I'm kind of overwhelmed. Put a heating pad on my stomach last night and an icepack well, below that, afterwards last night, but still woke up in miserable pain at 3am. And now, off I go to work. Sigh. I hope this gets better soon! Am wondering if I should cancel my summer plans. I've not had a flare this long or bad since I first got IC almost 10 years ago.
    I don't really know how optimistic I am about the PTNS just because nothing else has worked. I flare up several times a month and I have to usually go to the ER to get IV pain meds of dilauded or a shot of dilauded to get the flare up to calm down and back down to my normal amount of pain. They usually end up doing one of morphine and two of the dilauded. My pain level is constantly at a 9. I haven't found anything at this point that helps other than the pain medicine. I never sleep and I have to plan my daily life around how my bladder feels. I haven't been able to work because of the pain and constant bathroom trips. I tried to this past summer and it was really hard on me and my fiance finally told me to just quit and stay home. I have only been diagnosed for a year, but I have been sick much longer than that. My uro told me that I am already in a pretty severe stage and things are just going to get worse. If they get worse than right now I don't know how I am going to deal with the pain at all because it is already horrible now.

  13. #13
    ICN Member
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    So is it basically put a tens machine electrode on the post tibial nerve?

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