Please do NOT consider Interstim

[Charles Beverly]

I am a 44 year old male that was misdiagnosed by the supposedly prestigious Mayo Clinic in Jacksonville , Fla. I was told that I had overactive bladder even though I had all of the classic symptoms of IC. In fact one of the symptoms is very specific to IC and I kept telling them about it. In my opinion it was ignored because the Interstim is not for patients with IC. It canNOT help with the pain although some doctors will imply that it can. Anyways I am sure that all of you on this forum know how bad this affliction can get so out of sheer desperation I agreed to try the Interstim. It didn't work at all but when I told the Mayo Clinic doctor that it didn't work and that I was about ready to jump off of a bridge he told me that the ONLY thing I could do was get another one. I wasn't given a choice so I feltthat I had to agree. Obviously it didn't work either. In my opinion the Interstim is voodoo science. The reason some think that it is working is because so many are misdiagnosed with OAB when they really have IC and because IC has flare ups that can come and go for no apparent reason so people think that the Interstim is the reason that they had less pain. These contraptions are aggressively marketed to people with IC even though Medtronic knows that they cannot help with IC. Doctors are being paid to "push" these implants so they have an incentive to talk you into them. Of course that is just my opinion also. Look up the settlement that Medtronic had to pay where they admitted that they were compensating doctors to push their products. They paid something like 240 million to people that had defective leads to their pacemakers. There is a good chance that the same thing is going on with the Interstim leads. Look it up for yourself. You will probably have your eyes opened when you do. Look up the whistleblower that exposed Medtronic and how they really feel about the people who use their products. The whistleblowers last name is Poteet. The bottom line is the Interstim is not a good device and the studies they cite to back their product up are small and full of mathematical manipulation. When I complained to Medtronic that my doctor would not schedule me an appointment where I could tell him about the problems I was having with my two Interstims Medtronics response was basically to get over it. They didn't ask me who the doctor is which is pretty odd unless you believe that they have a very cozy relationship with the doctors and don't want to upset them. Hmmmm? I was not offered any help with how I am ever going to get these things explanted. I was told I would have to find a doctor and pay for it myself. Folks just please believe me when I say spread the word and do not let your desperation make you try this that will not work. Take care and good luck to all of you.....Charles

[bubbe1]

Interstim

Charles,
I'm so sorry the Interstim didn't work for you. This is such a frustrating disease since what works for one person doesn't work at all for someone else.
I know that the stim is not for the pain of IC, but it seems to have helped some people on this forum at least with frequency.
For my husband, who is using a stim for severe lower back pain, it has been a life saver.

[icnmgrjill]

Charles,

Your preaching to the choir... and you raise very good points. I simply don't understand how the company and/or the physician feel no responsibility for removing a device which isn't working or, worse, malfunctioning.

Have you filed your report with the FDA yet?? If not, please do ASAP!!!

Jill

[LithEruiel]

I'm sorry it didn't work for you and I understand you're very upset, but I just have to point out that not everyone with IC has pain (I don't.) I'm still considering it due to the fact that frequency is my only issue.

[jrow]

You Ain't Jokin"

I am a 44 year old male that was misdiagnosed by the supposedly prestigious Mayo Clinic in Jacksonville , Fla. I was told that I had overactive bladder even though I had all of the classic symptoms of IC. In fact one of the symptoms is very specific to IC and I kept telling them about it. In my opinion it was ignored because the Interstim is not for patients with IC. It canNOT help with the pain although some doctors will imply that it can. Anyways I am sure that all of you on this forum know how bad this affliction can get so out of sheer desperation I agreed to try the Interstim. It didn't work at all but when I told the Mayo Clinic doctor that it didn't work and that I was about ready to jump off of a bridge he told me that the ONLY thing I could do was get another one. I wasn't given a choice so I feltthat I had to agree. Obviously it didn't work either. In my opinion the Interstim is voodoo science. The reason some think that it is working is because so many are misdiagnosed with OAB when they really have IC and because IC has flare ups that can come and go for no apparent reason so people think that the Interstim is the reason that they had less pain. These contraptions are aggressively marketed to people with IC even though Medtronic knows that they cannot help with IC. Doctors are being paid to "push" these implants so they have an incentive to talk you into them. Of course that is just my opinion also. Look up the settlement that Medtronic had to pay where they admitted that they were compensating doctors to push their products. They paid something like 240 million to people that had defective leads to their pacemakers. There is a good chance that the same thing is going on with the Interstim leads. Look it up for yourself. You will probably have your eyes opened when you do. Look up the whistleblower that exposed Medtronic and how they really feel about the people who use their products. The whistleblowers last name is Poteet. The bottom line is the Interstim is not a good device and the studies they cite to back their product up are small and full of mathematical manipulation. When I complained to Medtronic that my doctor would not schedule me an appointment where I could tell him about the problems I was having with my two Interstims Medtronics response was basically to get over it. They didn't ask me who the doctor is which is pretty odd unless you believe that they have a very cozy relationship with the doctors and don't want to upset them. Hmmmm? I was not offered any help with how I am ever going to get these things explanted. I was told I would have to find a doctor and pay for it myself. Folks just please believe me when I say spread the word and do not let your desperation make you try this that will not work. Take care and good luck to all of you.....Charles

I just had an Interstim Device removed yesterday. I have IC and pudendal nerve problems. I had it in for a week on a trial basis, with a wire coming out of my body attached to a control device. It made my pudendal nerve problem worse, and irritated my bladder. Of course, Medtronics had a rep there during the surgery who demonstrated the device before hand. My doctor took it out yesterday. I met with him in his office the day before and we were both disappointed that it didn't help me. He has been my pelvic pain doc for 12 years, and we tried this as a last ditch effort for relief. I'm be starting physical therapy tomorrow to see if I get any relief from that, and I may end up having pudendal nerve decompression surgery if entrapment is suspected.

I'm so tired of this disease and getting nowhere. I just wanted to comment on the lack of success with my surgery in case anyone is contemplating going through it. This device is really meant for incontinent and retention problems. Not great for pain relief.

[bubbe1]

interstim

Hi,
So sorry for all of you that have had a hard time with interstim.
It's too bad that the implant doesn't work for IC since it is effective for other types of pain, if put in by the right surgeon.
My DH has has one for chronic, severe lower back and leg pain following five failed back surgeries. If he didn't have it, he would be in bed with terrible pain. With it, he can get out and function. He's never had a moments trouble with the device, fortunately.

I hope you can find treatments that work for you.

Good luck.

[jen74]

I was told by a pain doctor that the interstim does not help Pain at all. It is only good for helping with frequency. He told me it would be a waste of money to put it in someone whose major issues is Pain.

Jen

[LithEruiel]

I know many people that have IC and have been helped by interstim. Frequency and urgency are symptoms of IC also (I have IC, but only have frequency, no pain), not just pain. If you just have pain interstim probably isn't a good choice, but it can be very effective for frequency and urgency. Please don't make blanket statements like "interstim is not for IC" when in CAN help some symptoms of IC.

[momw/ic]

I'm so sorry you have had trouble with this device and I sincerely hope you get your symptoms under control. IC is such an awful disease in part because there isn't a medication or treatment that works in all or most cases. Everyone's IC is different and responds differently to treatments. What can be a life saver for one person can do absolutely nothing or cause more troubles for someone else.

I take issue with the doctors and the medtronic reps who refuse to help their patients. They give a bad name to those who are really here to just help us. I had the interstim implanted in march of 2006. I have severe IC with pain and frequency being my most dominate symptoms. The interstim immediately helped me so much with my frequency. I have had results with certain kinds of my pain but I think it is because of helping the frequency that it helps that kind of pain. My battery died and I had a new interstim implanted just this summer. I have had just as excellent results this time around. I'm so sorry your experience has not been like mine. Again, I blame the docs and reps. My first stim was implanted in Dallas by a doc and rep there and my new one was done in OKC by a doc and rep there. In both cases they were all very attentive to my needs and answered my phone calls and questions. When my stim died I had no doc here and medtronic was very helpful in figuring out it was the battery and how to find a doc/rep to help me.

I think just like in any profession there are those who are out to make money and don't truly care about the customer. There are obviously docs that are that way and medtronic reps I'm sure. I believe it is in those cases that are not successfull that it's most important for those people to be most attentive. I just don't get it! I'm very sorry you have had to work with those kinds of people. They have would probably be like that no matter what their profession. Unfortunately.

Again, I hope you get your symptoms under control. Just keep trying things. I know that there are so many people who have had tons of problems from interstim and I wish so badly I could give them my experience because it has truly helped me. I certainly believe that if it has not worked then they need to be willing to remove the device for you. My doc would do it in a minute!
Hang in there and keep looking for a doc to treat you and respect you as a person. They are out there!

[1982]

Charles I'm sorry you are suffering. I'm a twenty-nine year old guy living in St. Augustine. I went to the Mayo in Jacksonville as well and had a terrible experience. One of the PA's I only saw a DR. once told me IC was the diagnosis from hell an nothing worked except bladder removal. I asked about instilled medicine and he said it was useless. He tried the ankle stim but that was not effective it helped while the device was on but the second it was turned off everything came back. My main symptom is urge all the time. I don't feel like my bladder is full my bladder is just never quiet so to speak some times I have pain put the constant urge has me seriously depressed I just want some kind of help. Have you found any good treatment in jacksonville?

[LithEruiel]

Charles I'm sorry you are suffering. I'm a twenty-nine year old guy living in St. Augustine. I went to the Mayo in Jacksonville as well and had a terrible experience. One of the PA's I only saw a DR. once told me IC was the diagnosis from hell an nothing worked except bladder removal. I asked about instilled medicine and he said it was useless. He tried the ankle stim but that was not effective it helped while the device was on but the second it was turned off everything came back. My main symptom is urge all the time. I don't feel like my bladder is full my bladder is just never quiet so to speak some times I have pain put the constant urge has me seriously depressed I just want some kind of help. Have you found any good treatment in jacksonville?

Sorry you had such a bad experience. There are so many treatment options, that PA is full of it...everyone is different and different things work for different people. There's a lot of info on this site...There's also a database on this site where you can find places that treat IC, I don't know if there are any near you or not. http://www.ic-network.com/md/ Good luck!

[momw/ic]

Charles I'm sorry you are suffering. I'm a twenty-nine year old guy living in St. Augustine. I went to the Mayo in Jacksonville as well and had a terrible experience. One of the PA's I only saw a DR. once told me IC was the diagnosis from hell an nothing worked except bladder removal. I asked about instilled medicine and he said it was useless. He tried the ankle stim but that was not effective it helped while the device was on but the second it was turned off everything came back. My main symptom is urge all the time. I don't feel like my bladder is full my bladder is just never quiet so to speak some times I have pain put the constant urge has me seriously depressed I just want some kind of help. Have you found any good treatment in jacksonville?

I so sorry for your experience but please don't listen to that PA! It's not true! There are many things to try to get relief in your symptoms. Not only that but something that didn't work when you were first diagnosed might work for you on down the road. That happened to me. Keep hanging in there and just keep looking for a doc who will help you find what works for you!

[passion4life]

So sorry about your experience with the Interstim. My device was put in this past October. At first, I did not do as well as I had anticipated. My doctor and company rep re-programmed the device by widening the signal across my nerve bundle. I can finally feel some improvements.

I was told that Medtronics considers the device a success if there is a 50% reduction in symptoms! Wow...really?!

[Sarojini]

I'm very sorry you had a terrible experience with the Interstim. I have had an excellent experience with mine; my frequency/urgency is way down - with medication, I was able to reduce my bathroom trips from 40+ times a day to about 25+, but that was still way too much. My Interstim has reduced that to about 8-10 times a day. I also have a lot of pain with my IC, and like momw/ic says, the Interstim has helped somewhat with certain types of pain. I do, however, still require pain medication at times. I also had my Interstim replaced in 2010 because the battery conked out; I had no complications from either of the original stages or the revision.

It works for some people, not for others. Doctors who refuse to admit that it isn't working and try to force patients to continue the therapy anyway really shouldn't be practicing in my opinion. I know that my doctor would just take mine out and find other options for me should I suddenly decide it has stopped working; I wish all doctors who place these devices were as well-informed.

[Snowbird]

Charles,
I am very sorry for all you experienced with interstim. I had interstim years ago and several surgeries on it. I had doctors that put it in refuse to take it out. I can hear and undertand your frustration over what you have gone through. There are so many like you and you have every right to feel how you do.
I have wanted for years for Medtronic to reveal all the problems connected to interstim in public information but that has not happened. That way a person has any and all information when making a decision whether or not to get interstim.
There are many with long term and permanent nerve damage and more from interstim. Not to mention the emotional blow it delivers when things go wrong.
I urge you to please file an adverse reaction report with the FDA. They have been compilling these reports for years and they are so very important.
I am very sorry this happened to you. I know you probably feel alone but there are thousands that have had serious problems from interstim and you are not alone. Many that are willing to lend a ear and help if need be.
I hope you have healing in your body and your soul from all of this. It takes time. I have been there.
Thank you for your post on this subject and your honesty,
Snowbird