PTNS - 2 weeks in - Please share your success

[emilyandlouise]

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!

[phoenixgirl]

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?

[emilyandlouise]

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!

[phoenixgirl]

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!

[emilyandlouise]

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.

[phoenixgirl]

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?

[emilyandlouise]

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?

[ABliske]

Emily,

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

[glitteringglory]

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*

[ryannicole357]

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?

[kadi]

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.

[ryannicole357]

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.

[Beep123]

So is it basically put a tens machine electrode on the post tibial nerve?