Interstim Implant - should I get it?

I posted this earlier as a reply tro Anne5762 posted on Dec29 08. I guess if I want an answer, I should start a new discussion, so here it is again.

I’m in the test stage now; the leads were inserted on April 7, 2009 under general anesthesia. While I was under the Urologist also did some bladder and urethra stretching and some biopsies which caused irritation – I’m just now getting over the irritation. .
So for I have had little relief from the InterStim stimulations, but it could be the irritation from the stretching is not allowing the stimulations to help. I’m being pushed a little by the Medtronics Rep and the Urologist to decide by Monday April 20 if I want the implant or have the leads removed.
A little background: I’m 69 years old. I was treated for aggressive prostate cancer in Nov. 07 with seed implants and external beam radiation Jan- Mar 08. Since then I have had severe overactive bladder and urgency problems- some episodes with a lot of pain. Overactive bladder drugs do not work. I typically have 6-8 nightly voiding episodes and upward to 30 in 24 hours. I use a package of 52 male guard pads and 20 adult undergarments every 10 days or so.
The voiding diary being kept now during this test phase shows 20 to 27 episodes in 24 hours, but the nightly episodes have dropped to 4 in the last couple of days. However, the Interstim stimulation seems to make the urgency worse. I pray I can make the right decision on Monday.

Wally

Report post

45 replies. Join the discussion

I had complications from the moment the tester was put in. I was told those things would change when the real one was put in. The interstim went in and had complications right off. If your having nerve problems that is not good. That is why myself and thousands have nerve damage and have difficulty with our legs.
Have difficulty walking. Interstim is not for pain, not for IC and won't keep a person from flaring. If you were told those things they told you wrong. Everyone that tries to educate others knows to make sure people know that. It is suppose to be in Medtronics information that it is not for pain. It has never been approved by the FDA for IC. It has not changed since any of us had it a couple years back like people are told. It is the same device. Put in the same way. It is still causing injury to people all across the nation on a daily basis and unfortunately they won't tell patients that either. If your nerve is already effected then please proceed very cautiously. Consider your pros and cons and what your life is like with the ability to move about, go and do, and so on. If you have pain at those sites or in the tailbone, spinal cord area then consider life with pain there forever. Just keep a very close watch on what is happening and any changes. Anything different at all. Any pain in the lower body,legs,toes curling,shocks going down your legs, or elsewhere,problems at implant sites. None of that at all is normal. None of that is suppose to happen.
Please go to the FDA site and read the injury reports on this device if you want information your doctor may not give you. Reps won't give it either. Please go to the MAUDE reports and read them there. Each one of us that has had injury and serious problems files a report with the FDA called a adverse reaction report, and more as they are keeping track of this. If you have any issues make sure your surgeon attends to it. Not a nurse, not a rep from Medtronic but the surgeon. Look at it this way a Rep. is just a rep. We go to reps for all kinds of things in life but not for surgery. They sell us cars and all kinds of things.
I hope your issues resolve very quickly. It is in your best interest for long term well being that they do.
I wish you the best.
Sharrylynn

Report post

HI all,
So many horror stories about the Interstim- this is the same thing as the sacral nerve stimulator, right?
I can't handle the pain emotionally or physically or financially at this point. The level of pain is so high; I read its like cancer. Anyway, I saw my urogyno, we're still doing the installations but the pain is always there. It affects every aspect of my life. Actually, if I lose this miserable job and lose my healthcare, then I lose everything.
So, I'm going to compile info about this device and I'm probably going to go through with it. I feel like this is the end of the road unless I want to get some heroin. I just can't lead this lifestyle anymore.
Comments?
-Gloria

Report post

Interstim is not for pain at all and is not to be marketed as such. It was never approved for IC either. Some instills make these IC bladders hurt worse and sometimes a person has to back off of them or change them to another kind. DMSO they have found make the bladder worse.
Please research interstim further before making your decision. Go the FDA site, and also read the Maude Reports. Talk to people that have had it personally. I know it is marketed as the miracle cure.
I am sorry your so miserable and those of us with IC completely understand.
Best of luck to you,
Sharrylynn

Report post

Well...how discouraging it's been to read all the posts. I am 34 years old. I get up anywhere from 9 - 28 times a night. More often than not, I get up about 15 times from 10:30 at night until 2:00 in the morning. In the wee hours of the night, I find myself desperately wanting to just go to sleep and be done. I have tried more medications than I knew existed and tomorrow I am going in to have the implants put in. I am so very desperate that I am willing to risk all of the complications. We have done the cystoscopy and the deficiency tests...and any other of the humiliating tests you can think of. I have been endoscoped to see if there was endometriosis tissues attached to the bladder. I have had ovarian cysts removed (2) to see if there was pressure on the bladder. I am currently taking antispasmodic drugs to afford me minute relief. I can't live like this... I am newly married, 34 and already wearing adult undergarments and sleeping with a plastic cover on my bed. I left sexy behind a few years ago. (yeah...vain and yet ...) If this doesn't work, what else is left?? I was recently diagnosed with severe sleep deprivation and a severe depletion of potassium due to OAB. My GP was mortified at how often I've been getting up and how little sleep I am getting and is considering taking action against my drivers license (I fell asleep at a stop light.) I apologize for the rambling. I am frustrated and yet still somewhat excited to have found others that understand. Hubby is supportive, but he doesn't have a full grasp of the desperation that has a hold of me.

much love and healing thoughts to all of you.
~hrf

Report post

Maybe there is no one using this board anymore... but I am going to post anyhow. I was desperate when I found it...and maybe some else will do the same down the road....so in case this helps, here I go.

I am very much a baby interstim user. I had my phase one implanted yesterday, for the test run. I get up an average of 20-30 times in an 8 hour sleep period. I am 34 years old. I change undergarments at least once a night, 3 or 4 times a week. Last night, with the interstim on for the first time, I had to void 4 times, including my bedtime and waking voids. My urgency just DROPPED.

Having said that, we tried to do the in office implant last Thursday and they could not get me numb enough to proceed, so they had to pull out. Yesterday's proceedure went very smoothly, under general anesthesia.

I do want to say this....I can feel it. It feels like a small electrical shock at first (that is what it is, after all), each time I adjust my settings. It then mellows out to what feels like a muscle twitch after 10 or 15 minutes until I can't notice it all (about an hour after an adjustment.) I started mine at the lowest setting and have been adjusting up each time I get comfortable and no longer feel it.

Research your surgeon! The device really needs someone who excels in the OR. This is a very serious procedure and you need a comfort level and trust with the person installing it. I also believe it is an end-of-the-road, no-where-else-to-go option. Try everything else first!

Good luck and many healing thoughts to those of you traveling this path.

Report post

I read your post about your "nerve damage". I am a practicing urologist who has tested over 400 patients and implanted nearly 300. I have 6 patients who have had issue with Interstim since implantation. The issues were related to falls, damage etc to the device. Do people need reprogramming? Yes. If you needed it done 3 times you should have had it removed. It is clear to me that either the lead was placed incorrectly or you expected to be normal following the procedure. I tell my patients they will never be completely normal and that you will have good days and bad days. Your post is a disservice to the thousands of people who get Interstim each year and do very well with it. Your previous posts overestimate the true incidence of problems with Interstim. In my practice, it has been a low-maintenance solution to a very challenging problem. There has never been a reported case of permanent nerve injury relating to this device. I check all the time and I'm confident it offers a good solution for my incontinent patients. I wish you well, but also wish you would get some hard facts before you start dissuading people from at least getting tested. If things are as bad as you say, bring suit against your doctor and the company. Or have you already done that?

Report post

Bladderguy,
I never fell or anything else with my interstim.
I do have permanent nerve damage due to my interstim and it is well documented by neurologist. I know hundreds with damage. We are all reported to the FDA and in the MAUDE reports. However it has yet been acknowledged by manufacturer or most all surgeon's putting them in. Until it is and the manufacturer acknowledges this you will not hear of it. I have talked to hundreds of women for over 8 years now and not one has had a doctor admit to this unless he is one that refuses to put them in. So like many of us it is very offensive to once again run into a doctor who denies this happens.
I also did not know doctors were allowed on support sites and that changes how a person can get information on interstim from those that have been there and had the damage.
I think it is also important that people go to the article in the New York Times on the manufacturer and a former employee that blew the whistle on them for giving doctors kickbacks to implant their devices.
Many of us have all said we had the best of the best surgeons. I know I did and even traveled to Iowa City for a revision.
Sharrylynn

Report post

In my practice, it has worked well. If it didn't, I wouldn't use it. Why set myself up for lawsuits or loss of business from unhappy patients like yourself. If it caused nerve damage, go after the company.

In response to the NYT article. I also read that. That was from their spine division and NOT the Interstim division. I have worked hard to build a successful practice and will not risk my reputation or livelihood by taking any form of payment from a company I do business with.

One of my nurses found this site and said I needed to take a look. Glad I did. Sorry you are having issues. I don't want to discount that. However, in my world, Interstim has been a very good addition to my practice. Before I used it, all I could do was write prescriptions for $100 + prescriptions that worked about 10% of the time. Those patients were also unhappy. Is this therapy perfect? No. Is it without complications? No. Name me one medical procedure that isn't.

What kind of damage did your neurologist say this caused? As a physician, I am curious and would like to learn more.

Good luck to you and I do hope you find resolution to your pain.

Report post

You will have to go to other places as i cannot help you on this matter. I will tell you this. The interstim did damage to my sacral nerves and the spine where the leads are anchored. Causing nerve damage to the lower body both internally and my functioning ability of my legs and so on.
This is a difficult situation as most support sites do not allow doctors on them.
I have a great team of doctors and have lived with the damage for several years that I am use to it now.
However if I could choose I.C. with the Hunner Ulcers over both now I would gladly go back to just my I.C. with the Hunner Ulcers.
I cannot be a part of this discussion as feel it is not appropriate. I cannot be a part of a support group that a doctor is on. It doesn't seem appropriate to me and fair to patients looking for honest answers from those of us that have been there. What you stated just cancelled out anything anyone would ever have to say negative against this product or the company.
Even on kickbacks.
Best of luck you in your search for whatever it is your seeking.
I have my device and it was removed by a neurosurgeon to keep me from having more damage. I need the device as it is evidence.

Your fortunate you do not have a bladder disease. Not sure why your on here since this is for that.
I know of this issue with nurses to going to sites. It has gone on since the late 90's.
You have a good day. Happy you are one that can put those in without any issues ever. Your patients are lucky compared to thousands across our nation.
I will be leaving this support site for obvious reason.
Sharrylynn

Report post

Hi Sharrlyinn,

I am with you on this issue and have thought doctors have given false reports on this site before. One by the of Barb assured me that she just had the implant in and there were no problems at all. She made me sound like an idiot for asking and made me very wary of her advice.

I have seen 2 neuro and 2 urologists and they all told me I would be a fool to even try the interstim. Sorry to lose you.

Maggie

Report post

Hi Maggie,
Most neurologist will give that same advice to people.
There is such a denial with the medical profession over this issue. There were women that went to the same doctors I did in CO and at Iowa City and they have damage. It would be nice to get us all collectively together from the entire nation. People will read a story here or there and none of the damage or injury is admitted by the doctors, or the manufacturer. It has been a difficult thing for those that went in with high hopes and ended up with more trouble. I didn't have high hopes as mine was put in as a first line of defense for I.C. and I was never told their were meds, a diet and so forth. I was told this is your only option as I.C. is incurable. I lived on a ranch and was too busy for a computer and never looked into it. Had I looked into it I would of never ever agreed. Women with damage helped me till mine was out as the surgeons were real good at abandoning patients with problems with interstim. it is still happening and I have offered my neuro to women who cannot get it out. I know it is a good thing for some women. However for those that things went wrong with it is not. And for those that were just left hanging with a implant in their bodies it is not. There are people in the medical field working to make changes to all of this. And yes most neurologist don't agree.
I tell people do your research really well. Read the FDA reports as they are public. You can even order them and I did. I had a stack of papers with adverse reactions. It is a battle I won't get involved in with the medical field that put these in. I will along with others help those in need when things go bad. People are shocked,in disbelief,worried,scarred,depressed,and do not know where to turn. I have heard so many stories of this statement, "My doctor won't listen to me when I tell him I am having shocking down my legs,or any unusual symptoms I tell him." Then this one, "He tells me he has never heard of that before." It is a battle that is not worth the time to get involved in. Not worth the time or energy. If people look deep enough they will discovere some very serious injuries from this product.
You do what you need to do for your life as it is your body. Your decision. I wish you the very best.
Your not an idiot. Knowledge is power. You hang in there.
Stay in touch as you know how to reach me.
Sharrylynn

Report post

If it was causing your nerve damage, why didn't you just shut it off?

I didn't mean to upset you. IC is a moving target and I do not even try Interstim for patients with IC. Were you also having Urge Incontinence, or just bladder pain etc.?

Report post

It was shut off but they discovered in Iowa City where I went for a total revision that it never shut off. Which I found out later others had that happen as well. I turned it as low as it would go to help me out.
It was put in for I.C. only and as a first line of defense for I.C. I was never told of Elmiron or anything else until I got to Iowa City and asked once again is there a med for this or anything. Same questions I had asked elsewhere. Right down to is there a diet for this disease. The answer was no to all and that interstim was the only thing for I.C.
You did not upset me but you need to research the background of the inventor of interstim and what happened to him in CO.
I just feel your extremely defensive of interstim and really need to do some research on some of the extreme serious injuries that have taken place besides me.
Sharrylynn

Report post

Hi.

I have this device. I had the battery replaced and then I had serious difficulty with walking.
I was told it was severe cartiledge destruction, then it was osteo arthritis, then it was cysts, then it was "imagined"!
I was given drugs for medical problems that I did not have to cover up for what was going on with this device.
Then they replaced the whole device and they could not remove the wires from the first device. I was told this would require serious surgery and that it would cause "serious" nerve damage!
They will not put this in writing/
But I knew there was a serious problem when I had wierd symptoms with my legs and difficulty walking, leg pains and cramps thru the night and toe twitching non stop, spasams.
I am seeing the doctor again and I want answers to what has happened.
I was told by one doctor and Medtronic that they have never heard of these problems.
I thanked God when I found this site and one other where I read, with great alarm, that I am not crazy or alone, that this is real and that it is never going to get better.
I use a cane, a walker, bath aids, a raised toilet seat and drugs for pain that I have had severe reactions to
.
I know when I confront this doctor, and I need to do this, that he will no longer treat me and I will be left with this device and the remains of the old device inside me and that there will be no one to take care of me.
It has cost me my job of 20 years, my good benefits and a healthy life and even more problems that the reasons I had to have the device put in.
If there is any one out there who could talk to me about this and even e-mail me I would really appreciate this.
I was on one site but when I said I was going to the media with my story no one would chat any more.
Everyone is scared to speak out.
I just think that it cannot get any worse than living in silence and having the medical profession turn on me for what they have done but what else can I do?

Jane R

Report post

Hi Jane, I don't know exactly how all these postings work or the string, I find they bounce around. I wrote a while back that a Doc I know said not to get the implant, I do not have IC, but other issues. Anyways he is a medical practice consulting dr all over the country and said that clots get around the leads basically and this is what is causing problems, the leads move because of it. That's all I know I want to talk to him some more.

Report post

Hi Remi,

Thanks for the reply.

I do not know how this site works yet either as I just joined.

But I am terrified of walking around with one old device left inside of me and no one looking after the new one that is in there.

Medtronic just pretend they have no idea what you are talking about. They do. But no one is talking.

Thanks.

JaneR

Report post

I have had the implant for 1 yr. in Oct. and have just figured out that the pain and discomforts that I have been going through is caused by this thing.
I have suffered with a burning sensation alright, but it is in the private areas of a persons body NO ONE should feel burning.The literal feeling of a burning rod being inserted into your body and the skin just melting off. Went straight to the gyn and I was fine. He said the "feeling" of electricity on a human organ has got to be felt somewhere !! WHAT !!...I'm talking extreme pain, now !!
Just recently I have been having a burning, throbbing in my legs with shooting pains that make me cry out loud and decided to find a discussion room about this implant and I am appalled and scared to death , I might add, to what I have read !!
I have shut off my implant as of 09-23-09 and have made an app't to get this thing removed !! I just pray that I will have no problems getting it out of me !!
I wanted this implant so I wouldn't have to take the"drugs" that had so many side effects. My urologist suggested this interstim, but did not tell me about all the side effects of this. Even the "reps" that follow you through the whole procedure (which seemed to be very comforting for me) don't mention any side effects. So sad !!
I have had lung cancer and have had my share of side effects from drugs. I am a survivor of 8 yrs. and pray for all out there who suffer from side effects from the poisin doc's give us to make us feel better.
I will keep you posted as how this story ends !!

Report post

DON'T GET IT WALLY !!!!!!!!

Report post

raidermom,
I am sorry about your cancer but congratulations you are a survivor.
I pray too that your interstim comes out and comes out soon.
They refused in both states they operated on mine. I had so many problems from when the first one went in that I got a new doctor in Iowa and there they removed it and did the whole surgery again. It is called a revision for which you already know. I was told nothing of any issues with interstim. I did find out later though that there were people all over the place with injury or damage. I also found out real fast that doctors did not mind putting the device in or collecting their money and they also did not mind leaving a person with one in. I had to search for doctor to remove mine. In the mean time I just kept getting worse. I shut it off and kept it off. I never stayed on it's programming anyway. It needed to be off from the shocks it was sending down my legs and elsewhere. That is a good idea to do that. I also tell others if your going to get it then get it in writing that your doctor has to remove if it you want it removed for any reason at all. Take a witness and get it in writing. Let us all know when you go for removal. I wish you the very best and I understand the not taking medicine. I take more now than ever before due to my interstim.
I hope all goes well,
Sharrylynn

Report post

Wow now I am really worried after reading some of these replies. I am scheduled to see my urologist tomorrow. I have had terrible burning and frequency-urgency for over two years now. It is terrible. I have been to 6 different urologists in the 2 years I have had this problem. They have told me I have IC, Prostitius, Overactive Bladder, Prostage Problems and the list goes on. It seems each Urologist has reached a different dicission about what is wrong with me. I have even been to a psycologist because the Urologists made me seem like I was crazy. They just can't put a finger on my problem so natually they say it's in my mind...anxiety. This is ruining my life. The last 4 Urologists I saw said I had to get the Interstem Implant it's the last step. I have talked to a rep from the company and of course they say it's a great thing and should give me near instant relief. My girlfriend is ready to leave me cause I have become all consumed by this. All I want is to get better. I am 57 years old and this is the second time in my life that this terrible bladder thing has come around. The last time the only "cure" was getting cranial message thearpy along with massage thearpy. But it cost me thousands and I soon went bankrupt.

Now I am spending so much money on drugs and dr. visits. I am facing the same financial situation again. OF course I'd pay anything to get rid of this terrible burning I get almost every day. That brings on frequency and urgency. So when I go to the dr. it appears it could be nearly anything. So I get mixed diagnosis and take tons of pills. Right now I am taking vesicare, Levsin, Bactrim and many days Peridium which doesn't really work to stop the burning. Truthfully nothing seems to stop it. I am working hard to stop drinking coffee and I am working to not drink energy drinks either.

I work at an arts school and play in a band on the weekends. This problem has really interferred with both things I love and is nearly breaking up my relationship. She is very tired of hearing me complain and spend all my money on looking for the magic pill. The doctor I am seeing now say's the pill is really getting The Interstem Implant. I was considering it until I read the negative reviews on this post. I have copied them and will be bringing them into the Dr. tomorrow. I know he is gonna push for me getting the implant. I am afraid he will not try to help me with more traditional methods. Almost everything I have taken hasn't worked. He has me on Bactrim now and it is only the second day but I have done the Bactrim trip before and still have many pills left from the last failed experiment.

I am gonna end up alone and broke soon. My poor girlfriend has been through allot including 4 retention emergency room visits and me getting hooked on Ambient. I just wanted to sleep and forget the problem but Ambient is horrible and I ended up in the hospital on the verge of a nervous breakdown.

My girlfriend say's just get over it but I don't think she really understands my frustration of being sick nearly every day. I have a hard time going to places like Garage Saling, Picnics, Flea Markets, The Movies. And when I do it is hell most of the time and it rubs my lady the wrong way. I also take to many days off at work and generally come in on the late side due to trying to get that last pee in before I leave. Now my attitude is I might as well get paid while I am feeling low. Zanax helps some of my freakouts and I drug myself so much at night that I can hardly function the next day.

OK that's the problem to date. Now tomorrow I am gonna get the same lecture that the Interstem is the only thing left for me. I have gotten bladder surgey and also Hernia surgery and it took forever to feel better...like a year plus. I know being the nervous type that I will most likely feel bad from this implant and I just can't imagine things being worse then the are already so I have pretty much made the decision not to get the implant. I was really hoping for more positive reactions from this website but now I am even more frustrated since "the last step...the Interstem" has so many bad reviews and not just bad but scarey. I have had to cath myself in the past and it was horrible and painful and I got constant bladder infections. I have had so many different types of Anti-biodics and pills that I have become an expert. I tend to self medicate and found out that some of the meds I was taking were having bad reactions with new medication I was being given. I just want to know what is really the problem. If it's IC then would the Interstem work? Would it get rid of the burning? Same goes for Chronic Prostitius which one dr. told me was the problem. I live in constant fear that each day will bring on bad feelings and me getting totally consumed with the one goal of getting better. My girlfriend has said that it is all I talk about and she misses the fun guy. I want to be that fun guy again but it is hard. I always have to wear the happy face mask since I am a teacher at a very prestigious institution. I can't let the students see the pain face so it's Mr Happy when I am teaching. It is tough cause I can't just run to the bathroom when I feel the urge and it is pretty constant. I have to stand there and do my best to get into the lecture then the hands on experience. Usually I just tend to clock watch cause I just want to get out of there before it get worse.

Well now the decision Interstem or not! I can't go to a 7th urologist cause it's starting from scratch and my insurance is not going to allow the same tests over and over. I have had them all. Most of the time the answer is Non Remarkable. Nothing they can really see except I have a small bladder and my prostate seems slightly enlarged but not anything to worry about. yesterday I had to drive 100 miles an hour to leave a urine sample so they can look for an infection. In the meantime I am back on Bactrim and can't take Cipro cause it doesn't gell with Cymbolta. I also take amplitriptaline at night. I feel that the real me is trapped inside this other person who is always sick.

The long and tall of it will be me reading copies of these post tomorrow when he starts to push the Interstem again. So now what.........live with this? Is there any other answer. I have resorted to drinking baking soda shots when the burning is unbearible.
And taking many of the drugs that I have had before in desperiation. I am glad I found this site in time but am also sad cause I thought the Interstem was gonna save my life. Like I said...now what. I just would like a solid answer to as what I might have. Not ten different opinions. I am at the very end of my ropes as most of you all seem to be. Has anybody got some suggestions that might help me? Witches Brew for Holloween. I can't enjoy my life again till I get over this. I just can't bare the thought that I have to live with this for the rest of my life.
OK I have said allot and sorry for such a long first post. Thanks for your time and hopefully support. I have no family, no real living relatives and a girlfriend whom I love dearly ready to dump me.
Saxman

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Discussion topics

Community leaders