Interstim

[IcyAngel22]

I posted a message about my interstim and the frustration with it. I didn't mean to put a bad spin on the treatment or not to encourage others to try it. I just wish someone was there to give me objective info about it. I feel like i'm fighting a never ending battle and I like this forum. So if I offended anyone sorry. I didn't mean to. Sometimes writing to others who undersand let's me vent. :)

[janetm]

I can not find your original entry. Do you have questions about Interstim? Do you already have one installed?

[dyno]

Don't feel bad about posting on the board you did. That is what it is here for. Not only that, Interstim is not the answer for everyone and people need to hear when people have problems with the device also. For the ones that it works for, I am very happy that they have found something that works.

I am sorry you are having trouble. You will find support on here so don't hesitate to post.:kiss:

[littlebear]

I didn't see your original message (and can't find it myself either). But, I'm so sorry to hear that you've has so much trouble and frustration with the device. Sending you gentle hugs and best wishes, little bear

[ICNDonna]

I have looked at all of your posts and didn't find any that have been edited. Did you perhaps post under a different name?

If you'll email me with what you posted, I'll be happy to have a look at it. We do want to hear from people who have had problems with interstim therapy, as well as the success stories.

I absolutely agree that anyone considering this route should have access to the good and the bad stories.

Warm hugs,
Donna
donna@ic-network.com

[IcyAngel22]

I edited my post and erased it because when I checked the thread there was a post about rules on this forum and I thought it was directed to me so I erased it and changed it to what you all read. Thanks for your kind and supportive words. Having this message board as an outlet really helps. To answer some other questions I do have an interstim and it stop being effective for me seven months into the process. I've had it implanted Aug 2003. I was wondering if anyone has gotten a second lead put in on the other side. That's what my doc wants to try next.My doc told me that he doesn't know why it worked for a while and no doesn't. Has anyone had the same thing happen?

Thanks to all of you for the support and information.





Kristin

[rachelm]

Please know that we are all here to support you through whatever your experiences are with the Interstim. I have heard of many people that their interstims stopped working for. I have talked to another patient that has bilateral stimulation and she was disappointed that the results were not as dramatic as the first implant had been initially. I also see the same dr. and he placed two leads during the stage 1 trial so that I could experiment to see which side or both was the most effective. On some days I thought two were better than one but ultimately I decided to start out with one. I was already prepped with the pocket incision ready to place the device in stage 2 and I figured if I need to add a lead later that's always an option. My dr. left the decision up to me because he knew I was the only one who could judge the benefit. I thought their would be more chance of complications with two initially and that it would probably be easier to do an additional one later after the first had healed up if I even needed it.

So far I'm happy with my decision and I'm glad I took the conservative approach. Could you do a trial on the other side to see if it helps? If it doesn't then you wouldn't have to go through with the rest of it.

I hope you find something that works for you... I know this is frustrating.

Rachel

[ICNDonna]

The intended purpose of this board is to give people a place where they can discuss their failures with interstim. Those who are considering the procedure need to see the "bad" along with the good.

Warm hugs,
Donna

[BLOORE74]

I have an interstim device and am just as frustrated as u! I had it done originally in 9/02 & for a while i was ok, I went back 2 work & i really felt great for a while. Then one day i didn't notice or feel the stimulation, the docs & stuff said your just used to it, or turn your machine up, i knew something was wrong, cuz i was in extreme pain once again. There was a break in the wire that attaches to the sacrael nerve in my spine. I knew it, had it replaced in 4/03 & it hasn't helped since. It helps with the frequency & urgency but it needs to be reprogrammed periodically. Mine every 5 weeks. The docs charge my ins $976.00 every 5 weeks or so, & it doesn't do much good. The bills I have for this are crazy, w/ no income.I don't think i would've done this if i know now about it, but maybe someday it'll help again.

[peiti]

Bloore,

I am sorry that InterStim stops working for you. I have a feeling that it does the same thing to me. I had mine done on in 10/03 and it worked well for a while and then frequency was back.

Since I am in a clinical trial and the Medtronic put me to have some nerve exam to see if my nerve is damaged by the device. I have talked to the nerve specialist a few times and he told me his experience with other similar device on Parkinson patients. He said a patient got used to the stimulation and the device stopped working after a couple of months. I didn't mean to scare you. I don't know why it suddenly stopped working, but guess that is possible. His explanation makes sense. Just curious how Medtronic looks at things like this.:confused:

[janetm]

Peiti,
If it is not too much trouble, I would like to know the name of the nerve test you are having. Maybe it is something I can request from my doctors.
My situation is really bad. I am almost bed-ridden, can not go anywhere, am always in pain. Steroid injections in lower back (called caudal) help me alot but do not get all the way to the pain and then it gets worse again. I have been in pain all the time since September 16th and am getting pretty desperate.
I hope things improve for you and that you are not in pain.
- Janet

[IcyAngel22]

I would like to know the name of that nerve test also. Sorry to here all of you are in alot of pain and I truely understand. Good luck to all of you and I hope you can find another treatment to help.

[peiti]

Jane,

I am sorry that you are in so much pain. Hope you can find relief soon.

I will call my Medtronic rep tomorrow and find out the exact name of the nerve exam.

God bless you.

[Teri]

My implant also stopped working after 9 months. (no explainations) I had the revision surgery and it never worked again. Tried adjustments for 2 years before having it removed. It was the longest 2 years of my life, I was so sick.
Medtronics was of no help to me. Their rep said that the reason it wouldn't work was because "I didn't want to get better"......Nice, huh? ITs' bad enough you struggle from day to day and then you get some know it all salesman come off with an ignorant statement like that.

I too would like to know the name of the nerve damage test. My neuro is sure that I have nerve damage and I would be very interested in knowing..........

KP~ you are in my prayers:pray:

[rachelm]

Teri,

I am so sorry tha your rep was awful. There is no reason or excuse that anyone should speak to a patient in pain that way. I hope that your neuro is able to find some answers for you. Noone deserves to be treated that way.

Rachel

[janetm]

Teri,
I am so sorry that you went through all that. And to say that you didn't want to get better. How arrogant!

- Janet