retention and interstim

[calypsogirl]

My retention has gotten worse. Any anyone had relief with interstim? Flomax doesn not work anymore. It has worked for years abou six? I was bumped out of the cell cept study, and of course no call from the dr. I suspected as much, he is very busy, and i don't think I am one of his favorite patients. The nurse seem geniunely concerned, but that might be a show. You can see I am very pessimistic.

[Claredale]

The interstim worked well with me and most of my IC symptoms. I had urg/freq, retention, and pain. It's not designed to control your pain, but I was experiencing so much bladder irritation from urg/freq and retention, that once the stim was implanted and I saw a dramatic decrease in my urg/freq as well as my retention. My pain level decreased as well. I still required pain meds and some other meds to help me sleep, but 5 years out, my stim is doing great and I don't need meds at all during the day and only take pain meds before I go to sleep since my bladder still get's irritated at times during the night.

I am just speaking for myself with the interstim. I went into this treatment completely aware of the benefits and the possibility that it wouldn't help me at all and had gone through 2 painful surgeries for nothing. I am grateful that I had a positive experience with my implant.

Hopefully someone has that site address for you to look over.

Hoping for the best for you!
Tracey

[verdicries]

thanks tracey. i'm considering stim too since my retention (both urinary and bowel it seems) is getting worse. i'm just afraid. either you seem to love the stim or have horrid problems...and i have enuf health issues :(.

how was the healing process (for the trial and then the actual implant)? what were you NOT allowed to do? how long did it take to heal?

calypso...i'm sorry you're so down. i know how you feel. why do you feel you're not one of your docs favorite patients? i know i'm not my docs fav most likely cause i just have SO MANY damn issues. you'd think docs would LOVE me...i keep them in business AND if one was so inclined, they could seriously write a book off of me...sigh.

thanks again!

[Claredale]

I am a little different when it comes to any surgery, so my experience may be totally different from most. The doctor put me under "twilight" sleep at the beginning so that I can answer questions about what I am feeling. The only thing I remember is her asking me if I could feel something. I remember saying that it hurt then she and the medtronics guy saying just put her under now. I woke up in recovery without any problem. They gave me good strong pain meds in my IV. After a couple of hours and I was able to empty my bladder and hold down some liquids, I was allowed to go home. I have very sensitive skin and healing issues (another auto-immune disease) so my doctor was extra concerned for me. I really felt pretty good after the trial implant. I even went home and got straight on my computer to do a little work because I was the only person that could do my job. My manager saw that I was working on claims (I was a risk analyst at the time) and called my hubby's cell phone and told him to get me off the computer. Of course that was while my drugs were still working pretty well. No telling what I said to the adjusters during that couple of hours! Also my anti-nausea meds wore off as well, so I was pretty sick for the next couple of days, my doctor did send me home with plenty of phenigren supp to take care of that. Anyway, I didn't do much of anything for the week except took care of myself.

When I was due for my permanent implant, my doctor called in some valium (I think) for me to take beforehand since I was very anxious about going through the process again (especially the nausea) I really didn't hurt that bad after the first day of the trial. I remember nothing from the time I got out of my car and my husband took me inside. My husband said that he was practically holding me up I was so spaced out. I had to sign my name on some document and it you can hardly see what I wrote. Anyway, the next thing I remember is waking up and was given the drugs again. Dr. Doggweiller told my husband that I was to not do anything for at least a couple of weeks mainly because of my healing issues. I had some pain, but nothing that was unbearable. I stayed in bed or in my chair in the den for the first couple of days. My hubby went back to work and I felt well enough to work in the flowerbeds. "I wouldn't recommend that". I really felt a difference pretty much from the start with my freq/urg. Still had a little issue with starting and retention, but after they did a few programming changes, I was doing better with all aspects. I still have it adjusted from time to time, but I have to say it was a good experience. Yes, I have talked to women at my doctor's office. I gave them my cell number to some of the ones considering it. A couple of the women didn't get past the trial stage. I didn't get any real info on why not specifically, but just they didn't like it.

My advice is to do your research. Make sure that you have tried other treatments. Talk to your doctor about how many he/she has done and what the outcome was. When I was considering it, I talked to several of my doctor's patients that agreed to share their experience. I am talking to one of her patients now about the interstim that is going to my previous doctor.

I will try to find that website that someone on this site posted that gives you all the information.

Tracey