Update on 2-Interstim Girl

[SusanC]

Been awhile since I've posted, but been on these boards for years. Didn't quite know where to post this, since not a success, not really in surgery, and still facing many challenges, though not with the Interstim.

Had the first implant in Oct. 2000 and the 2nd in April 2001 after a series of the "old" trial procedure. (The only viable option, since it's non-surgical, in my opinion)

The first helped frequency, the 2nd helped pain to the extent that if I talk ALL of my meds, I can have 1 to 3 hours per day with a lower level of pain. Translation: Since the 2 interstims, my pain meds work!! That is the best outcome I've had.
Finally, after 3 years not working, and finally getting on disability, I was able to stand and sit long enough to return to teaching for 90 minutes a day last Sept. I was soooo happy!!!

But the 4 kids I taught became 7 then 9 then they were going to add more all the way up to a total of 15....without an aid! The stress of working with these students with serious reading problems and behavior problems caused by not being able to read finally caused me to leave in February.

This time, I did not take a medical leave...did not want to take more money from the "sick leave" fund that all of the teachers in our district contribute to....so I resigned. Sigh...did not want to do this...I'm ony 53....but found out that I would be able to volunteer to teach reading to some of these same kids IF I was not out on medical leave.

So, here I am....no work....forced retirement.....Yet, feeling better in some ways than in the last 5 years. I can take better care of myself and still study teaching methods to use on "my kids". That will be on my terms and when I feel well. toilet

So, that's my story for now....lots of gaps...lots of tears, etc. but I've made my peace. Perhaps IC was here for me so I'd do something different with my life. So I am....


Hope to hear from some of you who have made my life bearable since I found this site 6 years ago. grouphug

[Teri]

Hi Susan hi
So great to hear from you! Took me a couple of years to get thru the grief process of not being well enough to work but I did get thru it. And, slowly but surly, I'm working my way thru the other losses, the gardening part is going to KILL me this summer because I just can't fake it anymore. Sometimes I thinks it's my job just to make it thru the day BUT if I do make it thru the day, means I was sucessful

My interstim days, months, years have been a real rollercoaster ride too but I've finally got a dr who is not afraid of the FDA and he has me on meds that do give me a couple of hours a day and I am sooooooooooooooo grateful for that.

I know those tears, I feel them all too often. But, this site has kept me sane. I have been lead to a couple of real good friends here and to me, it's been a miracle that has saved my life.

Hope you say around.....us oldies need to keep talkin' lmao

tons and tons of hugs

[SusanC]

It's important for people to know that the Interstim is not for pain, but for frequency/urgency. However, I am one of the lucky ones who has been helped 'cause the devices allowed my pain meds to finally work. Yet, not enough to allow me to even work for a short time each day.

I've decided to turn my energy, like you have Teri, and others might NEED to, to doing what I can do....keep myself in as little pain as possible.

Gardening is also a hobby of mine...IF I am good, and ONLY go out for 15 to 20 minutes, I find it good for my soul and good exercise with all the bending and stretching. Sometimes, it's worth the pain to just do something I used to before this IC entered my life.

What do others do to keep active and keep from being sad even when in DAILY pain?? Need some help here. May go for counseling if I can't get out of this blue "funk". Help!!??!! I need a grouphug of information.

Thanks for your help,

[mary a]

Hi, I'm another one with 2 interstims. I don't have IC, just frequency, urgency and urge incontinence. I went thru a revision and the implant of a second interstim in the other side that is finally working on september 2002 (my first intrestim was implanted on october 2001).
I still need to take ditropan xl since the interstims have just helped my urgency. I felt very frustrated after my first surgery, because I was so sure that it was going to be my bladder problems solution...
Maybe because I was so frustrated I went thru a new test (the old one as Susan said) and just after the test I was able to not go to the bathroom for 5 hrs.!, it was a miracle for me! I did not cared to have 4 scars if I went thru a new surgery. At the second implant, he revised the first one because it was causing me pain in the scar where the lead is when I was in bed and my leg moved a lot. (What a long story, don't you think)
Right now, I'm very happy with these interstims, maybe they have not helped me 100%, but at least I'm not thinking about my bladder 24 hrs. a day. My doctor told me that at the same time I need to start training my bladder and to go every 3 hrs. whenever I wanted or not, and that it will help extend my bathroom trips. I can tell you that 75% of the time, I can handle it very well.
I hope Susan that you can get a new job that you are able to handle. (I hope you understand my english, I speak spanish)
Lots of Hugs!!!!!

[SusanC]

Posting this on a weekend in hopes that some others might see it...I have a feeling that many only look at "Today's Active Topics". Even with 2 interstims and all the meds, nearly every day I am not able to get up in the AM before 9:30...and then I have to FORCE myself since the drugs...Ultracet and hydroxyzine hydrochloride make me so dopey. eek

Then, If I do anything at all..like spending a few hours with my only grandson...it is laying flat for me in bed to prevent pain from escalating. Yikes!! I hate this...been going on so long and looks like it will continue until a cure is found.

Hey...that's it...all of us on this board are to be friends when they find a cure...we'll have annual reunions where we share our success. How cool would that be.

Just sharing....what do you think??!??

Bless you all, we share this crummy disease, but we also have real lives, don't we? hi

[mary a]

That would be great to make an annual reunion... But I think it is very hard to do it... We all live to far away from each other. But I'm so happy that I found this site, because it is the only site where I found intrestim stories from patients. not stories built by medtronics in the Medtronic web pages...
I'm so sorry that you still need so many pills and the two interstims...
How many people are on this board with two intrestims like you and me?

[Teri]

GREAT idea Susan

Mary~there is no way we are going to get space on the Medtronics site.....not unless that wonderful cure that Susan is talking about were to take place banghead banghead cussing