Interstim doesn't seem worth it

[Lynns' Molly]

[img]rolleyes.gif[/img] I am not sure at this point in time that the interstim implant is worth it. I have had it almost a year now. Was implanted on the left, then re-implanted on the right. I still will have times I cath, I puff up, I hurt all the time, it does not do the pain rally much at all, and you feel what it is doint on top of the disease. I still get constant bladder infections. I only shower, not baths because my doctor has never wanted me to bath. I am ready to say take this implant out. It will work briefly, and then not, and I have to travel a long ways for programmings, it is not all I think maybe it should be, at this point. I have a permanent prescription the other day for antibiotics for these constant bladder infections, hurt, and so on. What do you think? Has anyone said enough, and had this taken out?

[DebbieB]

Hi Lynn'sMolly:
I am confused why the InterStim was placed on the left and then placed on the right hand side, what was the reason for this??

I had my InterStim Implant almost three years now and it took my InterStim almost a year and half to get any kind of great results..
The big thing for me is that I went every four months for adjustments and I would go until I like the stimulation and the results I was getting..

If you were told that the pain would go with the InterStim , then your doctor was giving you misleading information about that..
I was told my by doctor it was only for frequency and urgency not for pain..

How many times have you gone for adjustments??
As you say you have to travel a long ways???

I take baths all the time with the Implant, why were you told not to take a bath???

I think you need to have adjustment done to get the results you need..
It take awhile and "patiences" is a big thing right now!!!

Good luck on what you decide to do !!!

~~~~Debbie~~~~

[yvette]

Hi Lynn's Molly, I'm sorry to hear you've had problems with Interstim. It certainly is not an exact science yet, of course nothing with IC is certain. I am the same way in that I can't take baths...they ALWAYS lead to infections and I know for some poeple they can cause those pesky yeast infections.

Debbie is right it does take patience with Insterstim. There is a lot of trial and error with adjustments. It took me over a year to get some-what satisfactory results. It does take time and I am a VERY impatient person. [img]wink.gif[/img] Gosh! We are all so different and what works for some may not work for others.

A woman named Dede just got hers removed. You can prolly still see her posts if you look within the past 45 days, unless they've been wiped from the server. (?) If there are others who've removed theirs, I hope they'd be willing to post their experiences. Interstim is not for everyone. Ultimately the decision is yours and you'll still need to find a way to make peace with your decision and with yourself.

I wish you the best of luck with whatever route you decide.

y. [img]smile.gif[/img]

[ICman]

For those of you who have said it took you a year or so to get results you were happy with, I was wondering about how many adjustment occured over that year or so. Also did you all have some results at first and then adjust for better results or did some of you have no results at first.

I have had my implant since the 5th of December and to date have had no results at all. In fact I can only feel two of the four leads. On I feel by the device and the other I can feel only if turned up to about 6 and while that is where the Dr says I should feel it, I am getting no results. Part of the problem was I never had a trial (no comments on this please as what's been done has been done) and my implant was put on the s4. later this month I will be doing the nonsurgical trial on the S4 thatnks foor any feedback.

[DebbieB]

Hi ICman:

Just to let you know I had about four adjustments up to the second year with the InterStim..
At my two year check up , I was told my Implant was not working and on May 8th , I had to have the surgery done over as he found my lead wire had crack in half at the centre of my spine this was due to a faulty lead wire..
I had a new thicker and longer lead wire replaced, then I had two more adjustments..
Each time I did my adjustments I had some results as time went on it got a lot better..
I think it all depends on if you get the right area on the sacral nerve and the right electrodes on..
I have to travel two hours so when I go I make sure I am able to feel the stimulation before I leave my doctor office..
The stimulation is around your rectum and private area, that where you should be feeling it..

I only have one lead wire on and my Implant was placed on S2 area..

I go for a check up every six months now and if I need to do adjustments I do it then..

I wish you well on your nosurgical trial and give it time, as it does take everyone longer then others and as I said lots of "patiences" is a big thing right now..

~~~~DebbieB~~~~

[dedeash]

Hi
I did have mine removed but it was not by choice.....after 3 surgeries to get mine in the right place, I got infected so it had to be taken out in December.

Dede

[icnmgrjill]

Hi Lynn,

I know of a handful of patients who have also had their devices removed... for a variety of reasons: infection, no response, and, for some, that it caused more pain. It sounds like you've given it a good try so far. What does your doc say??

Jill [img]smile.gif[/img]

[sue041]

Hello, I was reading the post about how many of you ladies had to keep going back to have the interstim adjusted or moved to a new location. Has your Dr. or Medtronics offered to have the pain pump trial and then the implant. It will be a year Feb. 22 for me and I have had to go and have it bumped up about 4 or 5 times, but that just takes a second and they do that on a computer type device.I am not in any pain and if I had to do it over I surely would get the pain pump. I pray they soon find something that will help with the nightmare pain your ladies are having. You are in my Prayers. [img]smile.gif[/img]

[julesb44]

Hi,
I had the Intrastim implanted in 99. It didn't work at all, (I was feeling the stimulation in the wrong place.) so it was revised 2 months later. I would say it handled about 50% of my symptoms. I was much better frequency, urgency, and painwise. My stream was better too. But I still had flares sometimes. It never took all my symptoms away. It worked for about 3 years. Then for some reason it stopped working. I had my own portable programmer and I couldn't get the right stimulation. It felt like I was getting poked by something sharp and I kept having to turn it down. Finally I turned it off and there were no difference in symptoms. I flared bad this fall with a new symptom, urinary retention. I tried turning the stimulator back on, but it made no difference. I was having neck problems too and needed an mri, so I had the Intrastim taken out. I wouldn't say 3 surgeries for 3 years of a little relief were worth it. It does seem to help some people more than me, but that is my experience.
Take care, Julie [img]frown.gif[/img]

[Carlye Kirby]

Just had to add my 3 cents.... I totally regret the intersstim, it has caused me nothing but more problems. It worked the first 3 weeks and then it fell apart. I hate the stimulation, it drives me crazy. I have trouble urinating whether the stupid thing is on or off. Most of the time I turn it off lately. I am seriously thinking of having it removed. I have bladder infections every 3 weeks for 2 years now. I have horrible WORSE pain. This is embarassing but I have herpes, had it for 10 years.....never had a breakout until I had this GD thing implanted, now I constantly have outbreaks or vulvadynia or whatever, I am a mess. I take more meds than a geriatric woth gout. I hate IC, it is wrong, I am tired of pain and burning and not being able to pee, and always feeling like I have to pee, and getting up all night to pee. Did I cover it?
I am going on vacation in a month, Jamaica. So I decided I was not going to do anything surgical until aftre I come back, doc wants to do another cysto, to try and figure out why the infection. Perhaps someday they will pull their heads out of you know where and figure out how to amke our lives liveable. Until then God bless places like these, and people like you who say, yeah I know what she feels. Oh and I just love the hard deformed lump in my *** , it's really attractive. NOT!
Carlye......not wanting to be bionic anymore.

P.S. All my love and admiration for Debbie, for whom the only person I know of Interstim actually worked, but don't forget, they told me it would make the pain go away!!!!!

[SM]

I was told by a doctor at Mayo clinic that 50% of patients want the units removed within a year.
[img]rolleyes.gif[/img] Not exactly what they told me at pre-op.
SM

[pwalker]

Hi I know alot of you guys have had a ton of problems with your interstim. I had mine perm. implanted in Sept of 2001. I have had nothing but great sucess so far with it. I feel as though I have gotten my life back. I did not have a lot of pain with mine. Mine was mostly urgency and freq. and feeling as though even after I used the bathroom I still had to go. I had a very good Uro. who was the first one in my area to do this procedure. When I first went to him he suggested I try it. I asked him then how many he had done and he said 3. So I told him I wanted to try other things first. When those did not work the Interstim was my last resort of what ever kind of normal life I could have.

I am sorry that you have had so much trouble with yours but with this disease remember not everything works on everyone. And hopefully one day they will find some way to cure us.

[Ruth N]

There are other interstim successes out there. I am one. I have had my implant for almost 3 years and am doing great. Sleep all night and frequenccy cut in half. I did not get the interstim for pain and don't believe anyone should.

I am much more reluctant to post about my interstim success since so many people are having problems. Even though I firmly believe that most of the problems or failures occur when the protocols are not followed for who should be implanted I don't want to lead anyone down a path to misery. I believe in the interstim in the right hands and for appropriate cases can make a huge difference in a person's life. But since I can't know who is seeing a knowledgeable, honest doctor I am reluctant to encourage interstim anymore.

At the same time it is wrong to state that Debbie (my bionic twin) is the only one who ever got good results. That is just not true. Many successes don't come to the boards anymore and others,like me, are more reluctant , to post about their success for various reasons.

[lucia]

you are right Ruth, I don't catalog myself as a failure. I still hope that I'll find (well, not me, my rep. and mu doc.) will find the right adjustment for me. I don't have IC, I have frequency and incontinence.
I went to my doc after searching for one that has done a lot of implants, and that had a lot of experience. I trully believe in him and in his advices.
I think that all the ones that as me, that had the implant in less than a year, should give it more time. I read a lot of people that are looking to remove the implant in less than 6 months!, It is an expensive device and surgery, they should give it a chance to work!

[Carlye Kirby]

Don't get me wrong Ruth, I was not being literal when I said Debbie was the only one with success. I am just very frustrated tha tit did not work for me and was just using Debbie as an example. I am really, sincerely happy that you too have releif, we all deserve it, we just don't all get it. Is it my docs fault??? I don't know. He is good at what he does, it just wasn't for me. Although I would not have known this had I not tried it. The only thing that sucks is that it has caused additional problems. I do think people should know about the positive just as well as the negative. No debates, I am merely devastated it did not bring peace to me.
Carlye