FOR SUSAN

[jd]

I HAVE SENT YOU SOME PRIVATE MESSAGES ABOUT MY INTERSTIM. MY IMPLANT IS WORKING WONDERFULLY AND IT IS THE BEST THING THAT I COULD HAVE DONE. I WISHED IT WORKED THIS WELL FOR EVERYONE.

[Susan2]

HI Jd,
Thank you so much for your letters. I answered them in P.M. Very intresting!!!
Thanks again!!
Susan

[PhlFx]

I have had the Interstim implant since Dec. 02. It worked great until 3 weeks ago. It started ramping up to max speed on its on. They have tried to adjust it twice and we are going to try one more time and if that does not work I have to have the whole thing redone. But it did not stop the pain just the other stuff.

[Teri]

{{{{{PhlFx}}}}} wishing you the very best on your "re-do". I know how depressing it is. I've been there and it hurts

sending tons of prayers your way~

[mary a]

I'm soo sorry for you Phlfx !, if it is not your fault, does Medtronic will replace it for free, or do you have to pay?

[Susan2]

Hi PHLFX,
I'm so sorry for what is happening to you. Did you do the trial, and did it work for you? The dr., wants me to have it done, and one day I'm o.k. with it, and the next I'm scared to death! I worry that the same thing is gonna happen to me. Keep us posted as to what they are gonna do to you
I pray things will get better. Did you stop going to the bathroom sooo much? I know its not suppose to help the pain, but was wondering about the bathroom trips??
GOD BLESS YOU
HUGS
SUSAN

[maryfair]

Hello, PhlFx, I have the same questions as Susan does. I hope you will answer her in here so that I can see your responses.

My urologist has suggested an InterStim trial. I have been trying to get as much information on it as possible.

[PhlFx]

I had the trial done in the hospital with basically twilight sleep. I felt very little. But wearing that thing for over two weeks was a big pain. You cannot bathe, scoot, bend over, have sex, and work. You have to just kind of lay around. But the test was successful. I had the implant Dec. 9th and it worked great for urgency and frequency but my lower back pain increased and so did the Restless Legs. But I am willing to go through it again if it makes me feel like I did. Of course right now it is cut off because it will go to max speed on its on. That really hurts. But yes I was satisfied and I did not get a UTI through the whole thing and that is amazing for me.

[deborah b.]

HI PHI-X HAVE YOU HAD YOUR INTERSTIM REPROGRAM YET?? DEBORAH

[Susan2]

HI PHLfx,
So are you saying the 'trial' did what it was suppose to do since, its not suppose to help the pain, but the frequency?? Would you do it again.
Believe me, if I could slow down going to the bathroom, I would gladly wash myself off in the sink for 2 weeks! That part would be easy compared to going to the bathroom 35-40 times aday
Thanks again and God Bless you
Hugs
Susan

[Susan2]

Hi Mayfair,
Saw your post, do you think you will have the interstim done? I am getting to the place, I think I am going to give it a try. I live in the bathroom! How many times do you go aday? I usually go 35-40 times, more if I have a flare.
I read EVERYTHING I can on this subject, and some of the ladies have been wonderful, if you want to talk, please write to me.
HUGS
SUSAN

[deborah b.]

SUSAN ARE YOU GOING TO HAVE THE INTERSTIM DONE? DO YOU HAVE JUST URGERCY&FRQUENCY ALONG WITH PAIN? DEBORAH

[Susan2]

Hi Deborah B.
Thanks for asking. Yes, but the interstim is just in the talking stage right now. He wants me to meet a couple of his patients, which I will do.
Yes, the urgency and frequency is terrible. I live in the bathroom, never go anyplace except to the dr. This is not living! I have really bad pain also, somedays I feel like I am peeing broken glass, to me this can't go on!
Are you the one that had the interstim taken out, if so, HOW could a dr., put you through all you've been through and tell you , you don't have IC??? That blows my mind!!
GOD BLESS YOU
Susan

[Michelli]

Hi susan

I was scared to try the interstim trial..........it was a miracle, it worked great cut my bathroom trips down from 30x aday to 7x aday. they took my wires out yesterday.........back to peeing all the time. I am in the process of setting up my surgery date, yes I am scared but I have got to go for it. Good luck, I hope you decide, you want know until you do.


Michelli

[Susan2]

HI Michilli,
Thanks for your most encouraging letter. Yes I just got back from my URO., and the plans are finally in the works. My Uro is going to be the one that does my surgery, that is what I have been praying for. Its a long story. I just cannot go on living like this. I go to the bathroom every 15 min., and I stay exhausted all the time.
If I still have the pain afterwards, I will deal with it, but this urgency and frequency is killing me!!
GOD BLESS AND KEEP YOU
Susan