question for rachel

[littlebear]

Hi Rachel,

I'm so glad to hear that your special version of the trial helped you to come out of that awful flare. Your Dr. sounds really amazing (like he's really smart and creative about finding the most effective yet least invasive treatments for really tough problems).

I'm wondering about something you posted on another thread on this board. You wrote that "many of the problems occur with the implant site not just the leads." I didn't quite understand what that meant, so I thought I'd ask you what your Dr. said along those lines?

The most important thing, though, is that you're feeling better (much better, from the sound of it)! Hoorah! Sending you all my best wishes, little bear

[rachelm]

Littlebear,

My dr. said that most of the problems related to the interstim deal with the implanted device. Now my box is on the outside during the trial, and the lead wires were percutaneously placed. He explained that the thinner the person the more difficulty they can have with the device moving and irritating the surronding tissue as it encounters friction inside the hip. Most of the pain that some people report following the procedure and years down the road can be attributed to the implant site. (This is not a quote from a med. journal or study, just what my dr. said he has experienced in his practice. This is why he is trying to treat me with the benefits of the stimulation on a temporary basis, (as long as my leads stay in place and infection free) instead of going to the perm. implant. For me it's the best solution. I hope that more uros will begin to think outside of the box to see this option particularly for patients like me that have severe flares with intermitent remission. Best of luck to you! I know many people have the full implant and do not experience problems but it can become a risk. If I end up having mostly bad months than I will go to the full implant but for now it's working.

I've stopped being careful about pulling my leads out of place. It's been months since I've been intimate but I finally felt up to it. I can't believe my temp. wires haven't moved yet! I've even lifted a box and reached for things many times throughout the day at work. My dr. said after this point any remaining time with the temp. wires is a bonus. I think I'm out of the worst part of the flare.

I pray that I stay that way because I will soon be looking for a new job since my position is being cut from my district. Job hunting is stressfull so I hope I do o.k. I've worked all year through this bad flare even, taking 2 grad. classes for my specialized training that my district no longer wants to fund. Ugh!!! This change in my position has made it much more flexible when I must be out because I'm not the main classroom teacher that the children can't do without. Of course they miss the benefit of the program but they still have a classroom teacher. Last year it was very difficult to carry on the physical demands of being a first grade teacher while being so sick. I hope I'm able to get another job like the one I have now.

I'm sorry I've gone on and on. I hope I answered your question earlier. Remember what he told me wasn't straight out of a study but rather his own experience.

Rachel

[tigger_gal]

Hi There,
yes there are alot of risks involved in the interstim that is a big issue with people.... you must read the warninigs and percautions.. I never heard that thinner people had more problems thats interseting.. if you have the link I would like to have it.... My device is in my butt not my hip.. I did have a period of time were programing was a problem due to weight loss ( I went from 135 to 99 lbs) also turning your device of and on can change stimultation. once I had the magnets turned off and was programned on 30 sec off for 10 sec(I did post this else wear. )
I haven't had any other stimulation changes except when I went to pt.. but, it is not bothing me and still working.
Brat

[littlebear]

Hi Rachel,

Thanks so much for answering my question. Hearing what your Dr. has told you about his experience has been very helpful to me--I'm always in the market for more info!

I'm also so glad to hear about how everything else has been going for you. It really sounds like you've accomplished a whole lot--even with that huge flare (I'm so glad that things seem to have settled down a bit on that score!). It also sounds like you've been pretty active lately, which must feel good. Also, I'm betting that there are a bunch of very lucky 1rst graders out there somewhere . . .

I hope that your grad classes are going well and I'm wishing you lots of luck with the job search!

Best of luck with everything (and keep us posted on everything too!). Best wishes, little bear