Interstim reprogramming

[tcbc1989]

Hi,
I was wondering if some of you would mind posting how often/ how many times you had to have your Interstim reprogrammed. I know the body goes through many changes (weight gain/loss) and other things with regards to swelling that cause the Interstim to need reprogramming.......mine seems to work well for a couple of weeks and then I am back at the doc office to get reprogrammed....I have had my unit since June. thanks!

[Teri]

With my original unit, I only needed 3 adjustments....then after 18 months it quit working. I had a revision done 6 months later and was having adjustments weekly, than bi-weekly for almost a year and decided to have it removed because we just couldn't get it to work.......

So, don't give up.....I don't think there is a magic number.

[peiti]

After my permanent implant on 10/31/2003, I have had 7 reprogrammings. They still can't find the right setting for me.

Good luck. bunny

[littlebear]

Hi, I'm not far enough along in the process yet to answer your question. But, I'm glad that you're getting some relief. I'm hoping, though, that it will become more dependable without too many more visits for reprogramming. Best wishes, little bear

[tcbc1989]

hi friends..
thank you for your input. I have my Interstim for urinary retention. So when my unit is not working, i have to catheterize myself. I get these symptoms:
unable to pee without pushing and i feel the tingling sensation at my tailbone area. I turn my unit to a lower setting but then i can't pee on my own at all. I have to use lidocaine ointment to get the catheter in but I am so swollen and irritated. So I have another appointment to get reprogrammed this week. I know I am not a very patient person. I just want to feel better. frown

[DebbieB]

Hi tcbc,

Well it will be soon five years for me with the InterStim Implant and I have only had four reprogramming so far..
Yes we are all so different in this !
How long have you had the InterStim Implant??
As it took me up to almost 8 months to see any kind of improvement..

~~Debbie~~

[tcbc1989]

hi Debbie,
I have had my interstim since June. I felt better immediately with the stage 1 implant and then 2 weeks later had the permanent one put in. When it works, it is wonderful. I just don't understand why I need to be reprogrammed so often. The doctor said it is nothing to be concerned about, but it is a nuisance! I don't understand why I feel so great after being reprogrammed and it does not last very long...it could be a month or a week....
tina frown

[tigger_gal]

Hi,
I had to have a few reprogrammings and mine was due to massive weight lose. I went from 135 to 99 in a short period of time. Then back up to 130.. so needless to say I had to reprogram because of the weight issues.
Now I have a question, I have been going to pt (pain therapy)now my stimulation has moved again, I am ok with it where it moved to. so should I contiue pt or quit? I am afraid she may really do something wrong. I know this was due to manual pt. I have told her I had the intestim, I hurt when she dose the manual therapy. so she says I can do the excerises, ok fine that will work.. Friday she took her fingers and pressed into my bladder and up and under my pelvic bone, and, I about died.... literly.. I peed my pants told her to stop and she said it will feel good when I let go, I said then do it. Now I am flaring horribly and called in today. Can manual pt move the stimulation?
thanks bunches
Brat

[tcbc1989]

Brat,
I think it would be wise to call your doctor. Is the person doing the therapy manipulating your backside also? I would think the leads could be moved.....have you noticed a change in your voiding? I use my interstim for urinary retention so I can't even zipper my pants if my unit is not working and if i don't catheterize myself. You can PM if you want...tina frown

[littlebear]

Hi Brat, I'm so sorry that you're flaring. It sounds like you might be on to something as far as the manual pt is concerned (it's sure doing something that it's not supposed to . . .). I hope that the lead hasn't moved and that checking with your Dr. either will help to take care of the problem or will give you some peace of mind. Sending you all my best wishes and gentle hugs, little bear

[peiti]

Cindy,

The way you described the pain therapy really scared me. If you had pain after the therapy or you think your flare was related to it, then please don't continue. I don't know if we can have hand massage, but I guess it is ok if the masseuse avoids the IPG and lead area.
If you are worried that the lead might move, you can tell your doctor to have an X-ray.

A gentle hug to you. grouphug

[tigger_gal]

OH yea I plan to talk to my dr. I told her she had to stay awya from that area, I have to go on friday and I am gonig to see if I can get these 2 togeather and voice my thoughts.
Brat