How is Peiti?

[littlebear]

Hi everyone, I'm wondering if anyone has heard from Peiti lately? I know that she was in the middle of making some very big decisions a few weeks back . . . So, I thought I'd ask you all if you'd heard anything from her or if you know how she's been doing (I also thought I'd send my best wishes her way while I'm at it). All my best to you all too, little bear

[Dixiefireball]

Littlebear I seen a post from Peiti on Gwyn post but nothing else. hope that you hear something soon I would like to know also how things are going.

[peiti]

Dear Littlebear,

Thanks so much for thinking of me. This meant a lot to me. Even though we live so far away from each other, I feel so close to you (I also mean everyone on this website).

My InterStim was turned off a week ago because the Medtronic wanted to know if it really helped me or not (it is written in the clinical trial protocol). The length of turn-off time is two weeks. The first few days after the machine was turned off, I was doing ok. However, the frequency slowly came back and now I have to pee 16-20 times a day (sometimes even more). I guess from this turn-off experiment, I can tell that the InterStim did help me on frequency, but not to the point that I expected. I peed around 12-15 times with the stimulation on. My doctor is willing to give me a revision, but I still keep my hope up cause maybe a few more reprogrammings will reduce the frequency.

Littlebear, how are you doing with your device? I hope everything is going fine with you. Are you on any oral medication now? I am taking nothing for IC, only Prelief when needed. I was thinking maybe Elavil will help relieve my pain.

[littlebear]

Hi Peiti,

I'm so happy to hear from you. I feel the same way about you and the boards. I think that it is so important to feel like other people are around who understand what you're going through.

I'm glad to hear that you're getting a pretty good sense of just how much the interstim is helping (or is not helping) you. I've heard that it sometimes can take between 6-9 months to get it right for some folks. I'm sorry but I don't remember how long ago you had your device implanted . . . I know you had yours before I had mine, though. How long has it been? I'm in the middle of month two myself (although another patient who had the device implanted by my Dr. on the very same day that I did hasn't had to have a single reprogramming--it just worked well and kept working well from the very start!).

Like you, I'm not taking any medication for my symptoms right now (because it will interfere with the reprogramming). This was the one thing I didn't get a handle on when I did my research, so I didn't know how seriously I would have to focus on being patient and not getting too frustrated or hopeless if I needed multiple reprogrammings. So, I'm pretty much in the same situation that you are in right now--hoping that the reprogramming I've just had will kick in or waiting for the next reprogramming and hoping it will be the one that works!

So, I'll be crossing my fingers for both of us (and for Bloore74, who just posted and has been reprogramming for a while after several other problems) and hope that our next reprogramming is our *last* reprogramming!

Sending you all my best wishes, little bear

[littlebear]

PS Thanks so much Rhonda for chiming in on my question about Peiti! I hope that all is well with you too. Best wishes, little bear

[rachelm]

Peiti and Littlebear,

It's good to hear from both of you. I've not been on in so long while I've been finishing the school year. I'm sorry that you are still trying to get your interstims programmed just right I know that's very frustrating. I'm wondering why my dr. didn't make me go off my meds when I got my implant. I'm still taking all the meds I was previously on with additional antibiodics for the prevention of infection at the site. So far mine is working O.K. but I did have a bit of a flare last week but my frequency and retention is better. I have a UTI today so I'm regressing a bit but hopefully this other antibiodic will kick in soon. I'm taking 2 antibiodics now one for the UTI and one for the incision.

I went on Bactrim to prevent infectionat the site for 2 weeks following my surgery then I was off for a week. On the 4th week my incision was still draining and started to look infected again. The incision still bothers me some but it mostly just itches and is tender. How long did it take for your incision to look healed? I'm willing to deal with it though because the benefit has made it worth the trouble.

I hope it kicks in soon for you both. Hang in there!

Rachel

[peiti]

Rachel,

The reason I couldn't take meds for my IC was that I was in a clinical trial. I was given only antibiotics and pain killers for my surgery for about 2 weeks.

It's been more than 6 months since my permanent surgery. Mine was implanted on 10/31/2003. My incision was healed pretty well, didn't have draining or any other trouble. However, I probably have keloid problem cause my incision site still feels itchy sometimes and I have to put silicon tape on it.

The past two weeks have been a hard time for me. My machine was turned off to see if it really worked. I will have it turned on next Monday. This time, my rep will suggest my dr to let me try a higher frequency stimulation to see if it can help my urinary frequency. My frequency was set at 25 before the machine was turned off. Do you know what you have for the frequency mode?

[rachelm]

I think my frequency was set at 30 but I'm not totally sure. So far I haven't had to get reprogrammed even though I was prepared for a long series of them. I've had some hip pain but my frequency/urgency is down to 7-8 times a day when I don't have a UTI. My spasms are better as well except when I eat something I shouldn't or like now with a UTI. I tend to get better over the summer months so I don't know if that's why I haven't needed reprogramming or not but I just have learned to take the good days when I get them and try something new when treatments quit working for me. I will probably have a keloid too because the incision area that's healing is so thick (almost a half inch on one side. I wish I had stayed on antibiodics the week I went off because it went from almost no drainage to seeping on one side badly. I was going for my second wedding dress fitting and I leaked through my pants. I was so embarrased! It only happened one other time in public on my first day back to work. Ugh! I started making sure I had plenty of extra guaze and clothes just in case.

During the first trial (the old type with percutaneously placed leads) my dr. turned my frequency up to 50 when I started having trouble starting my stream at times. It fixed that problem and then helped the pain more as well. I asked him about it during the stage trial and he told me that he wanted to keep me as low as possible to still find results because it was no longer a planned temporary measure since I was going through with the implant. I don't know if you remember me talking about his unusual use of the old trial as a deliberately temporary measure in hopes that it would get me working again and I wouldn't need the wires any more. I had a terrible case of urgency/retention and spasms. It was a nice try on his part to avoid a more invasive procedure but as soon as my wires came out (within 3 days) I started retaining and having pain again. I know the feeling of wanting it back so bad. I tried to work while I waited on the stage 1 implant but I ended up missing several days because the spasms caused so much pain and retention for me again. I hope that your reprogramming works when you get to turn it back on again. Hang in there and please keep us posted. We're rooting for you!

Rachel