Urgent PC Needle Placement

[phoenixgirl]

Has anyone that got PTNS with Urgent PC ever had them place the needle and NOT get a reaction from the toes or foot? Everything I read says that the needle should be placed three fingerwidths up from the ankle and two fingerwidths down and a specific response should be elicited.

Using the Current Adjustment button, slowly increase the current while observing the patient’s foot for a response. Patient response is generally a toe flex or fan, or an extension of the entire foot. Once a patient response is observed, reduce current setting by one level and begin Therapy mode. If the incremental adjustment of amplitude fails to elicit toe flex or fan, press the Stop button and reposition the Needle Electrode slightly. Re-enter Test mode using the preceding instructions. If repositioning the Needle Electrode and repeating the current step-up procedure fails to elicit patient response, discard the Needle Electrode. Open the second Needle Electrode included in the Lead Set and repeat the procedure on the other leg.

The issue I have is that I NEVER have a response. The nurse sticks the needle in wherever and then goes. I've asked her several times about the reflex or response and she says that not everyone gets that. To me though, it sounds like very specifically, if there's not a response like that, the needle is in the wrong place. My insurance won't cover PTNS so I'm paying for 12 weeks of treatment out of my pocket. In addition to the expense, I'm concerned that I'm going through all of this and not even knowing if it'll help because the therapy is not being administered correctly. I'd really be interested in hearing from anyone who has also had PTNS and what your experience was with the "toe twitches" etc. Thanks!

[vanilla]

Hi Phoenixgirl,

I had two PTNS procedures before deciding to go forward with the interstim. From what I understand, you should feel a fuzzy tingling in your foot or leg. I'm not an expert, but I do know the nurse would ask me if I felt anything and was not satisfied until I did feel the tingling.

[phoenixgirl]

Hi Phoenixgirl,

I had two PTNS procedures before deciding to go forward with the interstim. From what I understand, you should feel a fuzzy tingling in your foot or leg. I'm not an expert, but I do know the nurse would ask me if I felt anything and was not satisfied until I did feel the tingling.

Thanks, vanilla. I do feel some tingling but I am just not convinced the nurse has been doing it correctly. I have some literature directly from the company that makes the Urgent PC unit and just by looking at the photos in the brochure and reading the description of how the needle is supposed to be placed, I know for sure she's not doing that. Whether or not that makes a huge difference, I don't know. I called the surgery manager at the uro's office and explained my concerns to her. I made sure she knew I wasn't trying to get anyone in trouble but that I just want to make sure if I'm giving myself the chance to see if this works for me, I want to be certain that nothing is being missed. She was awesome and offered to call the Urgent PC rep to see if he could answer the question. I have a feeling he told her something was up because she called me right back, said that the rep would be present at my next appointment and would place the needle himself while the nurse watched. Then she added, "If we've been doing it incorrectly, we'll extend the treatment at no charge." That made me feel really good. The thought of already being out over $500 and a month in and maybe not having it do any good was making me want to throw up. At least this way I'll know one way or another if I'm still a good candidate and can give myself every opportunity to at least SEE if the treatment will work for me when administered correctly. I am so relieved that they listened to my concerns and followed up with contacting the rep. That really eased my mind a lot!

[vanilla]

Hi,

My toes definitely flexed. Sorry I missed that, even though you highlighted it.
Good Luck. It's much easier than the interstim.

[phoenixgirl]

Thanks for that advice, vanilla! My uro has suggested the possibility of interstim and I have kind of been thinking about it but I really want to try the PTNS first. Good to know that I'm on the right track. I had another session today and as it turns out, my foot didn't flex, per se, but I did see a tiny twitch on my foot and the Urgent PC rep said sometimes that is all that happens. Apparently, the obvious flex only happens in about 20% of people. I definitely felt the tingling today and it was much different than before. Obviously it would be though if the needle placement was done differently. The nurse has been inserting it 1) in the wrong spot and 2) not deeply enough to get near the nerve. It was awesome to have the rep right there explaining every step. Not only did the nurse receive extra training but I saw and heard every bit of it so now I will KNOW if it's not being done correctly. The doctor even came in to check on me and apologize. They are going to extend my treatment for the 4 weeks that were "wasted". It's kind of a drag that I have to do this for a month longer than I expected but I could not be more relieved to know that it's finally being done right. The nurse could not be sweeter but she said she received the Urgent PC training from another nurse who was also obviously not administering it correctly. Just one more example of how doctors and nurses, no matter how good they may be in certain areas, are NOT always right. I'm sure there are medical professionals all over town that think I am the biggest pain in the butt ever but I couldn't care less at this point. I used to get so hung up on not offending people, etc. but this is MY health and if I have questions, I'm asking them. Too bad if that's a problem for anyone else! And as it turns out, sometimes it's good I DO ask! I just keep thinking about how many people (a lot of them elderly) have gone through cycles of treatments thinking they just didn't work when really they maybe just weren't getting it done correctly. Makes me cringe.

[meagain]

Phoenixgirl, You are so wonderful. I was interested to read your story, what a good thing for everybody! As a result of your story I'm going to check this out some more. It looks like a safer thing than the other stims. Thank you for your persistence, let us all know how you do!

[phoenixgirl]

meagain, I will definitely report back after my treatment plan is finished. I have to do every week for 12 weeks and then see how it goes. It's very safe and doesn't hurt at all. Kind of feels like your foot is "waking up" after being asleep. I take magazines to read for the half hour and it goes by very quickly. As my uro said, there really are no bad side effects and it's definitely worth trying if your doctor thinks you could be a good candidate. As the rep told me yesterday, PTNS is not approved for IC use -- it's really for OAB but because my symptoms are mostly frequency and urgency they want to at least try it. Especially before having something like that surgically implanted. I didn't have pain like some IC'ers and I do know that the PTNS does NOT seem to help with pain. My doctor said that it doesn't work for everyone with frequency issues but there is about a 70% success rate and for those it does work for, it apparently results in pretty dramatic improvement. I knew that even if I had to pay for it myself (which I am) I had to at least give it a try. If I didn't, I'd forever be wondering whether or not I missed an opportunity to feel better. Good luck to you, too!

[meagain]

Aw, bummer. I wish it worked for pain. Oddly, for most of my life I've had frequency issues more than pain. Now, it's the opposite. Actually, most would find 15 times a day pretty frequent, but for me it's a reduction. It's the pain that drives me bananas. I don't mind frequency as much.

So you are going to test it for a while... Where do they implant it in your body?

Hope it works great! Good luck!

[phoenixgirl]

Aw, bummer. I wish it worked for pain. Oddly, for most of my life I've had frequency issues more than pain. Now, it's the opposite. Actually, most would find 15 times a day pretty frequent, but for me it's a reduction. It's the pain that drives me bananas. I don't mind frequency as much.

So you are going to test it for a while... Where do they implant it in your body?

Hope it works great! Good luck!

With Urgent PC (PTNS) they don't implant anything. They just temporarily insert a thin needle near your ankle for the length of the session, which is 30 minutes. The needle is removed before you leave the office. Think acupuncture with electricity!

[meagain]

I will ask my pain dr about it this thursday. He is a wizard with needles if nothing else!

[KristinKathryn]

Interesting. My insurance won't cover the Urgent PC, but will cover the Interstim. I am sure Urgent PC is less expensive. Are you seeing any results with frequency yet? Do you know if Urgent PC and Interstim work the same way?

[phoenixgirl]

Interesting. My insurance won't cover the Urgent PC, but will cover the Interstim. I am sure Urgent PC is less expensive. Are you seeing any results with frequency yet? Do you know if Urgent PC and Interstim work the same way?

Same here, KristinKathryn. It doesn't make any sense to me at all how the insurance companies determine what they will and will not cover. They told me they wouldn't cover the Urgent PC because it was experimental for treatment of IC but that seems ridiculous to me that they will absolutely cover a much more invasive and expensive procedure without question. I am in the middle of a huge flare right now so my viewpoint is kind of skewed at the moment but I did feel like I was improving. Whether or not that was from the PTNS or increased Elmiron, I can't say. Maybe both. As I understand it, the two treatments are similar in that they both stimulate nerves that communicate with the bladder to try and improve the communication again but the interstim is implanted with the electrodes working on the sacral nerves. Urgent PC works on the tibial nerve and is only administered in 30-minute increments. My doctor has suggested that I try an Interstim. They apparently do a trial for a week to see how you do and it there is improvement, then they will implant it with surgery. I'm just not sure I'm ready for that. I've read pros and cons but it while I've read that some people have had a lot of success with it, I've heard of many more who had pretty big problems. I guess it's like a hydro or so many other things with IC: everyone reacts differently. :sigh:

[KristinKathryn]

Phoenix girl, I had my interstim trial in September for 2 weeks. I was asleep for the surgery. I hate to say it was simple, but it was. I was sore for 2 days. It did not work for me, but I would recommend checking it out. It helps a lot of IC'ers with frequency and urgency.

[phoenixgirl]

Oh, I'm sorry to hear that it didn't work for you but I guess at least you know. I may end up trying it. I just don't know whether it would really help or not. My main issues, still, are frequency and urgency. Lots of pressure. I'll have some really good weeks where I can go 2 or 3 hours in between pees and I think that maybe I don't need an Interstim. I always have the pressure though and always feel like I have to pee, even if I can hold it. On the bad days, I think maybe I should just go ahead and try it. I could even deal with having to go a bunch of times during the day if I could just get some relief from this feeling like I have to go 24/7.

KristinKathryn, when you say it didn't work for you, do you mean you didn't get any relief at all, or that it just wasn't enough relief to make the implantation worth it?

[KristinKathryn]

It did not work at all. You have to keep track of all your voids, and there was no real difference. They consider it successful if your voids decrease by 50%. My URO has a 85% success rate with it.

While I was getting it taken out, she did a cysto and pelvic. She thinks my uterus may be rubbing against my bladder, so I am going to gyno on 10/31. I also have constipation isses, which can effect frequency and urgency, so she is sending me to gastro.

Medtronic has a website about Interstim. You can even have someone who has the Interstim call you and answer questions. I would still recomend it.