Question To The Failed Stimmers...

[ICNJess]

Hi ladies,

Though I'm sure this will only get a few replies since there aren't many of us who are willing to come out and post, but...

I am trying to get an understanding of the failure of the InterStim. I would really like some input.

Did you have to have your stimulator re-implanted?
Why was it deemed a failure?
How many stim surgeries did you go through total?
What are the lasting effects of the removal?


I hope more of you come out to share your stories...I would really like to hear them and find out if we all share a similar pattern with our failed device.

Hugs,
Jess

[tigger_gal]

gosh Jess.. I can't help ya.... I hope you find your answers..
Brat

[Elle]

I hope some of those who have had failed interstim problems will post. I'm considering it and would really like to know all sides before I make my decision. Jess - I hope you get the answers you need also.

[ICNJess]

Thanks, I think it's really important to read about the other side of InterStim. Elle--did you read about that new less invasive answer to the InterStim? You should consider that, Jill posted about it, and it sounds pretty interesting.

Elle--here's the link to Jill's post, give it a look over--

http://www.ic-network.com/forum/showthread.php?t=19138

Another thing about the InterStim is that it is pricey...I am still trying to dig my way out of the $40,000 it has cost me...

[Dusty]

In my case I was not told there was another treatment for IC even after I asked if there was a medicine for this disease. My surgery for the test was not a good thing right off....I barely could walk or move after the test leads were put in..I was told this would go away and was a temp problem. I also was given no information on the tester or the implanted device. Some have referred to me as stupid because I did not research this interstim on the computer and so forth. I however am not. I did not even use a computer except at work, and was not going to do personal matters at work. Other than that I had no reason for a computer as my life was busy. I had always trusted my doctor and anyone he referred me to so I had no reason not to trust at that time either. I look at it as a pacemaker for a heart patient...the doctor says you have this illness and you need this implant to make things better.....so I did I felt he knew what he was talking about. After the test failed he said that was not important....his words.."You need this so we will go ahead an put it in." He picked a side and did the implant. I had numerous reprogrammings on a weekly basis, as he said that was the problem. I had the generator move out of the pocket and up under my bone...he put it back after I insisted he move it back. More reprogrammings, trouble with my legs and feet,numbness and so forth. Then I fired him and looked for a new doctor. Found one in Iowa City and traveled there for the surgery to be entirely done over..the whole device and leads were placed on the opposit side, as they said it was in wrong. I had lived in Iowa at one time and trusted that huge hospital there that they knew also. They did tell me about Elmiron however. I was given a prescription for that and scheduled to have the interstim removed from the one side and place in the other side, leads and all. It was at that time that they and I discovered my generator was not turning 100% off...when they went to turn it on after the surgery they discovered it was still on. This I knew as I tried to turn it off when things got real bad with my body before I switched doctors. I noticed it would not turn off.( I by the way kept my device. When it was removed I asked the surgeon that removed it to seal it in a medical container for me and he did). It was discoverd my device would go low but not turn off. The problems with the shocks and all did not improve, shocks to the legs, and so forth..lower extremeties..it got to the point where I could barely walk from the bed to bath. A family member came for me and kept me with them until a surgeon was found to remove it as the two surgeons that operated refused to remove it. Even though they were paid by insurance. A neurosurgeon removed mine as I wanted the best to work in that area. I was operated on both sides, revision twice, numerous reprogrammings,the generator moved once out of the pocket and I was told they are not suppose to do that. I also like others was told when the shocks were in other parts of the body and causing difficulty with the lower body it was alright, they just needed to get the right programming. My bladder worsened during this time as it would spasm most of the time. The device is out and I would never agree to having one back in. My left leg has permanent and irreversible nerve damage, the spinal cord has nerve damage, and so does one of the two generator implant sites, the left leg is weak, gets numb, tingles,cannot keep up with the right when I walk, sitting is difficult as the damage is to the tailbone area also,feeling in my lower extremeties is not like it was especially in the left leg, has changed my bowels, and my bladder for the worse, sitting,standing and walking are very difficult and I am always in pain, nerve damage for me is permanent and nothing can be done about it. We tried physical therapy but the doctors involved with me are afraid to manipulate the body at all. So we decided not to go that route. I use a cane for walking and am suppose to use a wheelchair for distance walking. I live in severe pain but can handle alot of pain so I seldom take the morphine prescribed for me. I will when it gets beyond what I can deal with day after day. Nerve pain is a hard pain to treat and get rid of. So prescribed for me is 90 milligrams of morphine a day. I do not take that amount at this time by my choice. Everything I do has changed as the lower body cannot do what it once did.
There are others worse off than me and some not as bad. Hopefully they will respond also. There are some that do not come on here so do your research and look into the Maude reports and so forth.
I won't tell you to do it and I won't tell you not to. It is a choice you would have to make for yourself. I will tell you get all the information you can possibly get. Do not let anyone push you into this. It is not something that is easily corrected when it goes wrong. Try all the alternatives for your IC first that you possibly can. Only allow a surgeon to put the interstim in once you know beyond a shadow of a doubt it is for you. Then make sure you have it in writing also that at your decision it will come out any time you decide so. From what I have read the doctors and some are very pushy about putting in interstim. Let no one push you towards this decision. Remember this is a device implanted in your body and once it is there you will need someone that knows how to deal with it at all times. There are medical procedure like MRI's and so forth that you cannot have with interstim either. You can find all that information on here also.
Also a rep is just that a rep...to sell a product. Get your information if you can Elle from a surgeon and doctors that do this procedure. To deal with just a rep in my opinion is not O.K...it is a rep that makes a sale of a product whether it be a car, appliance or medical device. Talk to doctors.
Good luck to you and I pray you make the decision that is needed to help you and make life better for you.
Dusty

[ICNJess]

Dusty,

Did the neuro leave the leads in? Was the generator at fault, or did something jolt it to work badly? Why did the generator move out of it's pocket?

Sorry about all the questions, but I am just desperate to find stories like mine...kinda gives me insight as to what I am in for, you know?

[Dusty]

The neruosurgeon that took mine out told me due to the damage he was going to leave the leads and not operate in that area again, as it had been operated on too many times. He said he would try to pull them and see if he could get them that way.
I did not want the leads left in as I had heard there was problems with that in some cases. However I trusted what he was saying since he was a neurosurgeon and that part of our bodies is his specialty. I already had enough problems at that point. Remember I could barely walk at all by then. To me the most important thing was getting it out and getting it out as soon as possible. When I woke up in recovery he told me he could not pull the lead wires out. So he made a small incision off to the side of the original on and pulled them from there. Yes they are out. My generator did not every turn off completely. It would lower the intensity and that was it. It also would change its programming on its own. Nothing jolted it or anything else. I was very careful when that was in my body. The surgeons would reprogram it and I would barely leave their office sometimes and it had already changed programming. It send such strong shocks it would bend my foot at the arch. That foot droops as I read another lady on here a few weeks ago say hers did too. It will forever now. Why it moved out of the pocket I do not know. I had not lifted, strained or nothing...the time span for me was very short..this all went on as in all those surgeries and reprogrammings in a matter of a few short months. I had not even recovered from one surgery before I was back in surgery. So I never was able to even get active in life again due to back to back surgeries. Why and how that generator moved I do not know. I was like I said always recovering from surgery and not active yet. When it did move it went up under my bone and that was very painful till they moved it back. Then it was eventually moved to the other side..then as things progressed it was entirely removed by the neurosurgeon as no one else would, and I wanted a doctor trained in that are of the body to deal with nerves and all. I was given the heads up from other ladies on here at that time to keep my device and I did.
I do not know how many times you were operated on. You should be alright on the removal and all. To remove it is really not all that bad. I knew the second I woke up in recovery it was gone. I felt better right off in that respect. I could not lay comfortably or sit comfortably as it would hurt. Once it was out all that went away and those areas healed fast. The one pocket has nerve damage in it from so many surgeries.
I do not remember all your dealing with right now. I think you said yours moved???
Are you having problems with your leg or legs? I thought you said that also Jess.
I think once it is out you will find you feel better.
I know it is difficult for now. I remember that time period and thought it would never come to be. You also know your doctor is going to take it out so that is a good thing.
Both mine refused as others have run into also.
I finally gave up on that and looked for a neruosurgeon and am glad I did.
Hopefully you will be so much better when it gets out. I think you will. As what you deal with now should either go away or lesson greatly. We will pray for that.
Dusty

[Dusty]

It is very pricely..the surgeons that dealt with me made a bundle off of me. Especially in the reprogramming department. They had it made in the shade on that one...kept me coming back weekly as I called everytime it was not ok and the shocks were too intense..I wanted it fixed and fixed now. There answer was more programming to get what they called just the right one. And what they called would take time to get.
Dusty

[ICNJess]

Well total surgeries for stim I have had is the 2 trial, then a re-implanting, but it moved again, because the pocket is damaged from it moving freely around before. I do have some problem with the leg where the lead and generator are. It goes numb and falls asleep and gets the pins and needles feeling.

My uro said the leads will be left in place--and this is curious to me--because he said that scar tissue has completely surrounded the leads by now and that disturbing that could cause serious damage. So I guess we will see what happens by next year. I'm not going to think too much about it, because it is a long ways off yet. But I'm sure even more scar tissue will be wrapped up by nearly a year's time.

It's been moving around for quite some time, and when he reimplanted it, the damage had been done, the pocket was so damaged and stretched out that even implanting it further down and deeper did not work.

[patricia1]

First off I will say what happened with my first failed implant: First was a 40 pound weight loss then topped off by 2 (yes 2) rear end wrecks within 1 1/2 hours of each other. First one happened at stopped red light, 2nd one involved road rage 3 cars total and hit from behind doing 65 mph. We were the first car and slowing down to go around object in road. I think it was the 2nd one that messed up my stim.

Did you have to have your stimulator re-implanted? Yes I had it reimplanted from the waist area to the left butt area. Could not put back in waist because not enough fat for a pocket could be made.

Why was it deemed a failure? Mine was deemed a failure because 1 it would not control my symptoms. 2 I had MAJOR left toe curling. All toes would curl under when unit was on. 3 Major shocking when need to have a BM movement. It would shock me so much I could not move my left leg and I would have to turn unit off just to move my leg. If my kids were not around and remote was else where I was in a world of hurt.

How many stim surgeries did you go through total? Total 2

What are the lasting effects of the removal? Because I did not have total removal but elected to try again right now I dont have any problems from where it was removed from the first site.

Now that being said I am having pain every now and then where the new one is put. And I can still feel it and move it slightly. I also think it has moved somewhat. It also is not as good as controlling symptoms as the first one was in the beg. But because of the crap I went through just to get the new one, right now I am not dealing with it. It took my over 1 1/2 yrs just to get the new from the time problems started. Also for me, and I have said it before, because of scar tissue the 2nd surgery was by far the worse I have had. I hurt really bad. I had my first one done Sept 2001 and 2nd one May 2005 so almost 4 yrs of scar tissue. I also believe that my leads where moved down from where they were put to start with. I had alot of pain with that site and the new scar is lower than the first. My butt looks absoutly UGLY. Glad no one looks at it but me and hubby :biglaugh: . Glad I am not trying to hook another man with the way my back end looks :biglaugh: .

Try not to worry so much about the removal. I have heard that sometimes they do leave the leads in because of scar tissue. And if you realize ahead of time that it can be real painful you will be more aware. That is what took me by surprise cuz no one told me how bad it would be. The doc said the damage was worse than what was thought when he got in there and the surgery took 1 hour longer than what was thought.

I would tell anyone considering having this done to weigh the pros and cons. And think about insurance also. I lost mine and that is why it took so long to find help. The doc who did actually told me my symptoms where normal. I had to find out from Medtronics that they were not. Then when I told him this he would not return my calls. Also they need to be aware that anything from a small fall to wreck can move leads and then lead to another surgery. Also weight loss is a issue. We said this before. Mine stuck out far after I lost weight. Some people suffer life long side effects when it goes bad.

**I would honestly say, for me personnally I would not do this again if I turn back time to 2001. I had great results for 6 months then total H*** afterwards. What I went through has been awful not only physically but emtionally. I went through with a re-implant because I wanted to do the less invaise thing first. Not because I wanted another one. I research this option for several months before dec. and was never told once that any of what happened to me could happen. I knew of lead movement, but not to the extent I had. All the other I knew nothing of. This procedure SHOULD ONLY BE DONE ON A LAST RESORT OPTION......

I only wish the best for those dec to have it done and pray that they never suffer what I, you, Dusty or Tracy have been through. But hopefully we can give enough insight to where if they have it done they can go through with the procedure with full knowledge and know what they are getting into. Okay I am done preaching, for me this is a sensitive subject.....

[dancemomof2]

Jess,

So sorry you have to wait to have it removed, but don't to bother baby. I thought from reading other post that you knew what the problem was with yours and it was weight loss related. I assumed that this was the only problem you had was it moving out of the pocket when you lost weight. I thought I read that that was what was causing you to get shocked and have trouble.

Hope all is well with baby, love reading your journal, it brings back good memories.

[Dusty]

I know exactly what your talking about Patricia..in adverse effects. I have all of that except the foot and toes do not curl now it has been removed. I even will sometimes get the shocks and that is just due to nerve damage. So don't be surprised on that one anyone either. Tracy contacted me on that one as she was still feeling that after removal. I told her I have that and always have. It did improve somewhat over time and I do not get it as often. Usually if I have overdone and the nerves are more irritated.
Jess I have heard about the scar tissue building up and that is why some doctors choose to leave the leads. They do not want to cause more problems by digging for them. You should be ok on that as I have read they have been left. The generator out will keep you from having those signals it sends to those leads. Therefore you should be able to resume any and all medical test thereafter. Check with your doctor and ask him if he leaves the leads if you can have MRI's and so forth. I think you can once the generator is removed. It makes sense to not to want to cause more scar tissue and that the leads would be grown there by now. The difference with mine was that they were never there long enough to have much built around them. My surgeries were done like I said back to back continually. In all less than 9 months from start to removal....so there was no time for anything to heal. As far as help me with IC..never...did nothing for me except make matters worse. I bled more in my urine even. I just pray that once removed your problems with your leg go away. Hopefully they will. The curling in my toes left soon after removal and the bending of the foot. Your generator is turned off because your pregnant so that should help matters some.
Patricia has gone through alot with this also. So she understands totally too. I never consider you preaching however Patricia...lol...you just tell it like it is for you and are honest about it. You are sincerely concerned for another and that I appreciate.
If a person knows all these things it is far less of a shock than to find out later. I personally would rather know up front what can and does happen than to not. I cannot change I did not know anything about this and I trusted my doctor completely back then. I don't trust like that anymore.
Have a wonderful day ladies,
Dusty

[ICNJess]

Leslie,

Mine is weight loss related--the weight loss affected the pocket. So when the stimulator moved from loss of fat, it moved freely--thus damaging the pocket. Oh well there's no going back now. I thought maybe my leg problems were circulatory so I didn't first post about them, but after speaking with a doctor, they are not, as my arms and my right leg are fine.

If I had the InterStim on before, I'd get shocked, and I've had reprogrammings and they just didn't seem to get me back to satisfactory condition.

Patricia & Dusty,

Good grief you have been through so much. I hope so much that you don't have to endure much more, and that things work out for you. And I know what you mean about your backside...mine's a nice little map of pain.

And I am glad you are both so candid with your experiences. Hopefully some IC patients will benefit from your stories, instead of learning the hard way down the road...

Hugs,
Jess

[Dusty]

Jess don't let anyone make you feel bad about what your going through with interstim.
It is nothing you did or did not do. Just being honest with what your going through and what changes have taken place with your body is important to anyone considering this. It is also important to know that you are not the failure. I too will be glad when yours is removed and your feeling better. I am also sorry you have these problems. Just know those of us with the problems ourselves know what your going through as we can relate to it. I believe every woman that comes on here and tells what she is experiencing with interstim is honest and sincere about it. She is seeking knowledge and help. Some things change over time also. Mine did as one problem created another. Your pretty strong yourself to be able to talk about this as with so many this was their hope for help, and it turned out for you not to be. I know I appreciate your honesty and straighforwardness about what has happened to you and what your facing. It will help another when things do not work out for them. By reading what you say and the others like me, Patricia, and so many others, it helps people to know they are not alone in what they deal with. That someone else knows exactly what they are talking about.
That is why I feel this section of the boards is so important for those with damage, injury or problems from interstim. We know we can come here and talk to another. I am very grateful for this section and those that are brave enough to speak out with their stories of the failures of interstim. It is very hard to be able to do that when the hope was for a good outcome from interstim. I congratulate you for your strength in pursuing this subject and for all those with injury and so forth that respond back.
Dusty

[ICNJess]

Sometimes I feel like posting my story does no good--other times, I feel validated. I'll tell my story to whoever will listen, and I'll scream it if need be...I'd hate to see anyone else go through this. Nothing is worth this, not even 10 year's worth of relief.

[PurpleKitty]

After reading all the stories you all have had I'm ready to have mine yanked out tomorrow. Since I've ony had it in 2 weeks they should be able to remove it leads and all right. If I'm having problems with it already then what will happen in the future. One of you posted a really good point I never considered before, this is a life long procedure and will need medical follow-up forever. I'm tooyoiung for that. What happens if I lose my insurance or something. I should have done more research before I agreed to this. but like you all said, the reps and docs are soooo pushy. It's like their miracle cure all. I know having it removed means another surgery, but better now than later when there's damage. I just have a bad feeling about having this thing inside me. Then there's the question, if this was my last resort, what do I do now to cope with all the symptoms and pain? Will life ever be close to normal again? :hmm: :help:

[patricia1]

baileyrose being scared is totally normal....I have had mine since 2001 and had the revision in May of 2005 and I still get scared when I get problems with my new one. You are right chooseing and doing the Interstim is a big step that should not be enter into lightly. I am one who did lose my Insurance and after that when I had problems I could find NO ONE to help me. We have a charity/teaching hospital in Louisiana and when I first went to the urology dept they could not help me. It took another 8 months for the doc to get there that knew anything about the Interstim then another 9 months later for the surgery. Then it is still messing up. I always tell someone when they are considering this to think about the long term and whether or not they will have insurance and should they lose it and have problems with it can the afford to fix it. Because this is a very expensive treatment. And you are right it is a life long commi. should you consider keeping it. This is your choice and your body. And I do think the uros and reps are to quick to push this on us. I know mine was. But I still research for several months before dec to get it. Then I still did not know that I would have the problems I have had and to the extent at which they were. Then to be told they were normal, just b/c I had no insurance he basically kicked me to the crub. Which for me was very upsetting. All that being said there are some that have had GREAT success with it. And then there are us that have had nothing but problem after problems with it. I would never tell someone yes get it or no dont. I only let them know my story and I will do nothing but support their decision no matter what it is. You know I have never been told or seen anywhere that weight loss can affect the stim but for me and Jess it did. I lost over 40 pounds after getting mine and it stuck out so far in my waist it was very uncomfortable.

Now since you have not had it in that long I would think they should be able to remove everything the unit and the leads. For me I have alot of scar tissue and that was another problem encountered when I had my revision done. He moved the new leads down lower and I had alot of scar tissue. What ever decision you choose you will have nothing but support from us here. We have to stick together with this treatment and be there for one another. :grouphug: to you.

[Dusty]

baileyrose,
yes they should be able to remove your interstim very easily.
I agree totally it is pushed onto people. Mine was on me as the only thing out there
for IC.
And yes you will be able to manage all your symptoms of IC. It is just finding what works for you and adjusting your life to it.
My interstim is out now and dealing with the IC seems easy now compared to how I was with the interstim in. I guess for me I would rather deal with the IC. The interstim caused too many problems for me.
I agree this is being pushed as a miracle cure by some doctors. I also feel they candy coat much of the other side of this. That is unfortunate as then a person finds out later after the fact.
It is a life long commitment and you have to have a doctor that is skilled in this at all times. You don't want to get caught in the situation that Patricia or others have.
You also do not want to be caught in the situation of a doctors refusing to take it out either like I did or others did.
You must do what makes you feel good. If your not sure about it as a form of treatment for you then before you have it removed weight all the pros and cons for you and what you face in life. Then make your decision.
I do not know if you were told, but interstim is not for pain.
If your having problems already and I was like that with mine. Before I even left the hospital. Then I would definately really consider what you want to do.
I am sorry that your going through this. I hope the problems you are experiencing are not too serious.
I wish this was not presented as a last resort. Unfortunately it is by some doctors.
That kind of makes a person right there feel like they have no other options. I would not blame myself though. You are not to blame. If you are like many you trust your doctor and the medical community. I did too.
Please take care and know that those of us that have had problems are here for you.
Dusty

[ICNJess]

Bailey,

I never meant to scare you :( Unfortunately, InterStim is an option that is promised to be some kind of miracle cure--and that's all find and dandy if it works for you. I reveled in my months of relief and thought this was just so great. Then when all my problems began I was kicking myself. Why had I let myself get talked into this? What had I done?

On top of that, the medical bills that accumulated from this are growing. Stage 1 surgery. Stage 2. Revision. And the revision didn't work! So now it HAS to be removed. It is absolutely angering that there is no warning--at least that Patricia and I didn't know about--for weight loss and InterStim. My pocket's completely damaged; my medical bills are piled high to the cieling; I'm having other physical problems from this; and it feels like someone takes a bat to my lower back around the unit and my tailbone every night. And for what? To make the doctors and Medtronics richer? A few months of relief?

For me, and this is JUST me, it was totally not worth it. Some miracle cure. I am sure that there are people who will disagree with me on this point as they have had success, but that is great for them. For every success story, there is a failure, and I must say, the failures are just too darn important and dramatic to be ignored.

Ok I'm sorry I ranted so much, back to YOU...

If you want this removed, then do NOT let anyone talk you out of it. It's your body. I should have listened to myself when I wanted this unit removed earlier this year, but no, I let my uro and rep talk me into keeping it. Now there's no other option, it needs to come out. And now I have to endure at least 7 more months of pain from this stupid unit because I didn't have it removed when I wanted it to be removed. I sound like a broken record, I know...

But my main point is this;

Do not blame yourself...doctors push this treatment on people all the time, and yes, while we are to do our part in researching it, it's hard to come across the other side of InterStim. I see nothing on Medtronic's website about the WHAT IF's...maybe I suck at googling but I find nothing, except for here on the ICN, of some failure stories. Secondly, if you truly want this taken out, stick to your guns. I can't stress this enough.

Ok I'm done, I promise :)

Hugs,
Jess

[Dusty]

I too kicked myself over interstim. I was told as I said this was the treatment for IC..and there was nothing else. I had always trusted the doctors and so forth. I figured they knew what they were talking about. I had numerous surgergiers and the generator moving out of the pocket and so forth. I listened to,"We just need to get the right programming." As I went for constant reprogrammings. I also listened to what was going on with my legs, and shocks elsewhere in my body was more or less just me. The doctors acted confused that my body was responding to interstim this way and confused that I was experiencing shocks elsewhere. They implied this was not the normal for interstim. Jess is right in saying you won't find the information about the other side of this from Medtronic. There were people before me and they had problems. Nothing was said of these people.
I am afraid Jess is correct on another issue also....if you want it out..you will probably have to push and stick to your decision to obtain what you want. I was stuck with one that wasn't working properly and causing problems. They would not take it out. They sure jumped on the surgeries to put it in, revise it, and move it to the other side, and constant reprogrammings....but flat out refused to take it out.
I think if you decide to have it out Bailey you will have to really be strong and persue that.
Jess, I feel like you have every right to voice your feelings on this. I wish you would not be so upset with yourself for doing so. The only way to know there is another side to interstim is to tell the story of what happened to you also. I so wish you could of had yours out some time ago and not to have to wait all this time in such misery to do so. I understand the medical bills also from this. I am sorry.
If people only know one side of interstim....a good side told by doctors, reps and patients then they really are not going into this with full knowledge of what can happen. The only way to know the other side right now it seems is to talk on here. As I have not read these problems anywhere else either. I think some doctors are aware of it as they won't do the surgery. I also wish they would slow down on how many of these they are allowing to be done. And require the doctors to be far more educated that choose to do these. Also a huge requirement I feel is important is that if a person wants it out...then it comes out without the guilt trip, abandoning the patient and so forth. I would be far better off if they would of removed mine right away instead of just abandoning me as their patient with this device in my body, to find someone on my own to remove it. It is one experience I will never repeat.
Best of luck to you,
Dusty

[ICNJess]

Dusty,

I just get nervous sometimes, voicing up, because I know that opinions like mine aren't much appreciated. That's why I'm hesitant sometimes. But anyway, I sure hope that Bailey's appt went well today, and that she gets some answers and some relief.

On the bright side, Bailey, if you are going to have problems, better to find out earlier rather than later. And who knows, maybe your problems will clear up. I'm just stating my own personal thoughts and feelings.

Hugs,
Jess

[patricia1]

I agree voicing our opinions sometimes it can be scary, because not everyone appreciate or wants it. But others need to know what can happen cause you cant find awhole lot of negative stories about them. Here and the Maude site on the FDA webpage are about it. I agree Jess, I personally feel that my 6 months of success was totally not worth all the pain, emotional problems and crap I have had the last oh say 4 yrs. If I could go back in time and do it all over, I would not have done it again. I cant say that 6 months of urgency and freq free made any of what I have been through worth it at all. And again this my an only my opinion. Who knows maybe one day the FDA will listen to us and take alittle bit of a closer look at the Interstim product.

[ICNJess]

Patricia,

Can you give me the link to the MAUDE thing, and what exactly is it?? I've heard of it from a friend.

[PurpleKitty]

I just got back from my dr. and sure enough it was infected and there's a seroma (fluid pocket) around it. He drained a bunch of yucky stuff out of it and injected it with lidocaine. It was real fun! Right now it's numb so hopefully I'll be able to rest for a few hrs. My doc is so sweet, he told me the ultimate choice to have it out is mine and he'll do it anytime I say. He really wants me to wait though and see if it heals and I cont. to have improved symptoms. He can't take it out right now anyway cause of the infection. He wants me to see him again on Tues and have the rep check it also. I'm going to turn in for the day. Thanks for your advice and courage to stand up for myself. Hope you all are doing better. Don't beat yourself up about getting the stem put in, we were all convinced this would be the best thing we could do to help. For some it's a blessing and others is a curse. I hope this turns into a blessing for me, but I guess only time will tell.

[patricia1]

Jess the MAUDE site is with the FDA and you can report adverse events with a medical device. I reported mine. After you get to the site just type in Interstim and go from there. Here is the website:

www.accessdata.fda.gov/scripts/cdrh/cfdocs/cfmaude/search.cfm

[ICNJess]

Thanks Patricia!! I will definitely look at it. How do you make a complaint??

Bailey, I truly hope you heal up quickly and that it works well for you! I bet yours will work fine when you heal. If not, it's great to know your doc will remove it if you want that.

[HelenC]

I had an interstim in...it worked for a year. I never had pain...only frequency and urgnecy but after a year the pain started. Now I have puedendal neuropathy and I was told it was from horse back riding but I only do that 1 hour a week and make myself do it because i am not changing because of ic . I was told my reprogramming was needing to change leads from scar tissue. I wonder if the pain could be from the
implant?

[ktrncl]

I know exactly what you girls are going through I have had mine in for almost 8 months and already having problems with pain around where they put the thing in and it goes down my back and hurts my right leg so bad so bad that loratabs dont even take the pains away and all my symptons are returning the numbing down the legs and feet and a month ago my right leg gave out on me I go for a 2 reprogramming wednesday it took 2 hours for them to do the last one because it kept shocking my leg. I am really starting to have my doubts about this but I have honestly taken all the medicine and it wouldnt help my symptoms with Ic I thought this would be the best road but now I have regretted it for 2 months. 2 weeks ago having a real flare up and all the pain I honestly prayed to die because the pain pills or heating pad wouldnt ease my pain I suffered for at least 8 hours with intense pain . Remind you I have 3 children who needs a healthy mom. I was wondering the women who has felt pain in there legs if sometimes your leg feels very heavy like its hard to lift and move it? My doctor says he doesnt like the way this sounds and really dont know how to fix the problem if the reproggramming doesnt work.

[Dusty]

ktrncl.

I am going to be very honest with you, as from what your describe I feel this is your best solution. Have your interstim removed as soon as possible. Also go and see a neurologist after you heal to evaluate you and your legs. What you are experiencing is no alright. My legs hurt so bad to this day. I will lay awake at night in such pain as the pain is deep due to nerve damage. My legs are heavy just like you describe. I have numbness,and the left leg cannot keep up with the right. I see a neurologist and this is permanent damage for me. I think maybe too much time had gone by and
the damage was done. I don't believe however that is the case for everyone. Now we tried physical therapy for me and that is out. That does not mean that is the case for you. You are not alone with this as there are many that suffer like this from interstim.
After reading what you said however I would do nothing but get it removed. I am sorry this is happening to me. If you can do something soon hopefully things will return to normal for you. My legs, my spinal cord, tailbone area, implant pockets will
never be the same. It has effected my entire lower body as in the bladdr,bowels and so forth. I don't like what your saying is happening to you. I think the only way is to stop it is to have it removed. I was reprogrammed weekly and several revisions. The outcome was the same.
I know there are those that really push interstim. However I think if they were experiencing this themselves they would opt for removal. It is very different when something you thought was going to make life easier turns out to do more harm than good, and cause more problems. So I imagine you also have dashed hopes along with this. And like you said you have children to care for. Please take care of yourself. I hope that something is done soon to help you.
Dusty

[KathleenS]

After 5 (yes, 5!) surgeries (staged trial, InterStim, revision, Synergy device, and another revision) I am so ready to give up on neurostimulation. All this spans 3 1/2 yrs. I have never had relief from any of this. Like most of us, I did all this as a last resort, so now I don't know what to do. Once, several days after a programming I began walking with knees buckling with every step for 3 days (then realized it was the InterStim - don't know why it took me 3 days to realize). (I reported this to FDA device dept). Anyway, if I could go back to Jul 2002, I would not have done any of this. The Synergy device hurts me in most sitting positions. Also, in some positions, my right thigh becomes numb/pins and needles feeling (but implant on rt. side, so don't know??). I haven't gotten it removed yet b/c I had thought that I'd wait til I found some other way to control symptoms. But, like I said it is so uncomfortable. I feel so lost and frustrated about what to do. Kathleen

[Raelynn]

[I]I am new to this site (just found out about it), I have Interstim device in...have had 5 surgeries already (not counting initial "test" run)...I am in a dilemma - have it out or keep pushing my luck with "nerve problems", from total numbing to tingling, shocking (both internal and by incision). The longer the unit is in, the more it seems to "lag", the doctor said this is from "nerve desensitivity"...I have to wonder how long before the nerves no longer respond again. I am amazed to hear that there are "other therapies" that should have been exhausted BEFORE putting this device in - I was NEVER told of any of therapy...Doctor said this was the only treatment. By the way - I have this for retention (can't urinate AT ALL on my own)...even though I have never had any spinal injuries...prior to this that is! I did have 13 abdominal surgeries and nobody has been able to figure out why I even have this problem. Scared to do anything, scared to do nothing!!! If anyone has feedback...IT WOULD BE GREATLY APPRECIATED!!!

[Dusty]

I'm sure you do Kathleen and know that many of know how you feel.
Personally I wish I never would of heard of interstim or even let them put one in me.
I am going to the neurologist once again to see what we can do. My legs have worsened since I saw her last Fall and they only are getting weaker. The pain is worse and keeps me up all night. The left leg that took the blunt of the injury is in
constant severe pain now and for whatever reason worsens at night. The spinal cord area is worsening also. I will go on Tuesday and see her as I have serious problems from the interstim as it is. I would not keep it if I were you. Also the FDA is taking the reports and that is good and glad you filed. I just wish they would finally make a move with this. There are just too many with problems regardless of what some doctors are telling people and Medtronic. Mine is gone now but the injury from it will remain forever. The IC I would gladly have on its own. And I have the Hunner Ulcers, have to cath at times, have repeated trips to the bathroom all day long and night. I would rather just be dealing with that then this also. I wish there was a clear cut answer for you. However if your miserable and uncomfortable with it I would get it removed. I am so glad mine was removed before I let even more time go by. I know that lost feeling and so do others that have gone through this. We are here to help you and be there for you. I wish there was something I could do to help you feel better.
Dusty

[Dusty]

Raelyn that is so strange that is what I was told also..that it was the only treatment for IC. I would have it out sweetie. I would not chance the long term results it can leave your body with. Since you are already having problems I would not chance it.
I did not know either about other options. Had I known I would of tried them. I also would of never had interstim had I known there were problems. My problems are serious and will be there forever as they are irreversible. To me it is not worth it. I have trouble urinating also. For that I cath. I would rather cath than have this other also. I am sorry your going through this. If your having those kind of problems now..then I would get it out before they worsen. I started to get better at first when it was out, but that was just the initial beginning of it being removed. I have nerve damage in the spine and in the pockets, the legs also. To me the risk are too high once you develop a problem.
I wonder where your from as that is exactly what my doc told me that put mine in.
Best of luck to you.
Dusty

[Raelynn]

Thank you SO much for responding to me! I live in Connecticut (Southern). This is the work of "Yale"..who has done many of my surgeries. I have about 20+ questions I would love to ask you...I will try to only ask a few. How long was your unit in?(I am in the habit of calling it a unit for some reason!). Where are you from? Did your legs/foot keep going numb? Tingling? Toe twitching involuntarily? Legs having very delayed response? My doctor wanted me to go to a back doctor for eval. - I NEVER had a back problem in my life and never had these problems before the Interstim (all my surgeries prior were abdominal/internal/organs related), I went, and of course he said there are no problems with disks/vertebrae - I knew that! He then suggested a neurologist - that's supposed to be next. Please tell me the truth about what happened to you - IT SCARES ME MORE TO NOT KNOW, THAN TO KNOW! I stilll cath too...more and more the longer the unit is in (Dr. said that this is from the nerves getting "desensitized")...I can't help but wonder if they will eventually not respond to the device, as this unit has only been in 9 mos. now. I have to keep turning it up to get it to work well...at least until the "transient shocking" gets to be too much...then I turn it back down. They say I am not a good candidate for caths (this I KNOW) as it is VERY painful (massive amounts of scarring in abdomen from too much surgery and my urethra is not a "straight pathway"..not to mention ALWAYS having infections when I cath. Do you get them? Sorry this is so long! I am SO glad to have ANYONE to talk to about this!

[Dusty]

Raelyn our stories go very hand and hand. I have had many ab surgeries. I did
see a neurologist when I realized after removal of my interstim that things were not getting better. It is not a back problem it is nerve damage, and many of the nerves are completely damaged. The signals do not even get to where they are suppose to go to tell that lower part of my body to do what it is to do.
I do not understand why you cannot cath. I have cathed for years and am very grateful that I can do so. I use a very tiny cath and make sure it is lubricated well..it is easy and quick and nice to be able to empty the bladder. I am very careful when I self cath and clean my cath very well. I too am prone to infection and my doctor seldom caths me when I am in the hospital because those for sure will do this to me.
My unit was in around 9 months..numerous reprogrammings, several revisions, one generator moved out of its pocket twice. Went to two different surgeons in two different states to deal with interstim...and then finally choose a neurosurgeon to remove it as I could barely walk anymore. Then things felt good as it was gone. Once I recovered from surgery of the removal I knew things were not good and saw a neurologist. That doctor did several test to evaluate and see how much damage was done. Also that doctor did nerve conduction test to see to what degree the nerves are damaged. I walk with a cane and use a wheelchair for distance as I cannot walk far. My standing time is very little and I have noticed it has worsened since I saw the neurologist a year ago so I go back on Tuesday.
Yes I experienced all you do. I had curling of my toes, tingling down the legs,lower body,and so on.
Let me get back to you. Do not worry about how long your post is. I think any of us that have had these problems are concerned and willing to help.
Dusty

[KathleenS]

Dusty,

Thank you for your reply and words of support. I am sorry that it has gotten so bad for you, too.

Kathleen

[angelaharrell]

Hello to all,

I was interested to read all of your stories about the failed implant. I've been going back and forth over this topic for awhile. I have the implant (since April 2000) and now it doesn't seem to be working so good. I'm also tired of getting jolted when passing through metal detectors (some not all) and power stations. The tingling in the leg & hip doesn't feel great either. I won't even get into the expense of traveling 4 hours one way about 7 times a year for reprogramming.

Still, my potty time has been reduced. Back in April of 2000 I went from 20-26 times in a 24 hour period to 10-12 times. Now I'm back up to about 15-18. I'm beginning to see the increase in my voiding journal.

Also, I have a question about the implant, I'm 37 years old & can't remember where I parked my car at Walmart most of the time. I can't remember so many things that I've started keeping a journal (aside from my voiding journal). My uro thinks it is from sleep deprivation but I still wonder...Has anyone else had this problem when they had the implant?

[Dusty]

I am sorry your experiencing those problems. I had mine removed due to injury from it.
Actually saw the neurologist that treats me today. Because things for me are getting worse in my legs.
Now as far as your memory goes. I know that when your in pain or have these shocks it makes a big difference on your ability to concentrate. I did that too when my implant was in. My mind was kind of on the pain, difficulty walking and the shocks so I didn't really remember where I parked or so forth. I have dealt with sleep deprivation throughout the years due to health and I also know that will cause you to have problems remembering. I hope maybe if your not sleeping well you can get help for that. I take Prosom for that or I don't sleep well at all.
I hope things do get better for you soon,
Dusty

[patricia1]

I have had mine since 2001 and had a revision done in May. My problems started with a car accident that moved the wires. I was having all the toes on my left foot curl under and major shocking of left leg when needing to have a BM. After the revision things still are not great. Found out that the first 2 wires are not working right so that leaves only 2 left. They were twitching my left leg muscles. I opted for a revision hoping to do the less invasive thing for me. HAH hurt like heck and was worse on me the second time around. We moved the stim from the upper right hip area to the butt are and had to move the wires around to. It was a major pain. I have not experience the memory loss though. Good luck to you.

[KIM W]

As I Have Wrote Before, My Uro Said I Have To Have Mine Moved From The Left Hip To The Right. I Have Not Been Approved For The Surgery Yet, I Had To Sue Blue/cross Blue/shield To Get The First One Implanted. It Seems As Though The Dr Office Is Laying Around On This. The Dr Said She Wanted It Moved Asap And Now It Is We Are Waiting On Paperwork, Seems To Me That This Is Very Important And Why The Long Delay From The Dr Office. I Have Now Made An Appointment With A Nero. Does Anyone Have Advise On What To Ask Him. I Figure There Is Nerve Damage Because Of The Way My Left Leg Goes Numb,tingles,hurts, Toes Curl And Etc..i Want It To Be So Noted With The Ins. That I Had To Seek Help Somewhere Else Due To The Delay Of The Uro. Has Anyone Else Exp This Problem?? I Have Had My Family Dr And An Er Doc Say I Needed To See The Neri Because They Are Thinking Ms. That Has Scared Me So Much.
If Anyone Has Pos. Or Neg. Info Let Me Hear It.
Thanks For Helping Me
Kim

[ICNDonna]

I think seeing a neurologist before doing anything further with interstim is an excellent idea. They are skilled in this area. Let us know what you find out at that visit.

Donna

[Dusty]

Kim,
Hi, I do not know if your neuro has agree to take the interstim out yet. I do know this.
Many of us have run into a problem getting it removed. There is another gal on here that her doctor won't remove hers and she is looking for a neuro. Anyway the problem I ran into was when they found out about lawsuits and so on they for sure did not want to be involved. I had to get it out and that was more important at the time. We then started approaching doctors to just get it out for me. I wanted a neuro as I had had so many surgeries with my interstim that I felt they were the best qualified and the problems I was having. I simply asked him to take it out and he did. Then after I recovered from that surgery is when I sought out a neurologist and had all accessed.
I also kept my device. I had the neurosurgeon that removed it seal it in a medical container for me and he did. My husband was dying so I could not look into matters sooner than I did. When you heal get a good neurologist and go there. Tell them what you had and let them see where it was implanted. Tell them what is going on with your legs, feet and so on. Mine she did a complete evaluation on movement and how my nerves responded and so forth. Then she had a nerve conduction test run to see how much damage was in the left leg. She also had MRI's of the lower spine and upper spine. She also did a brain scan to rule out MS because I move and so forth like I had that. I have tremors and all also from the nerve damage. This is all documented in her paperwork and she saw it first hand. She drew her own conclusion right off after examing me anyway. She had the test done to see just how bad it was.
Mcgrapster on here can't get hers out. She unfortunately I found out yesterday was operated on by the same doc I was the second time. I do not understand why these doctors are doing this. If they put it in they should take it out and stop this complete nonsense of it just has to have this and that. I listened to her story with this doctor and it is exactly like he did with me. I thought by now this would stop. Obviously the device is more important than the human.
It is quite possible they are thinking MS for you because your symptoms are matching up. That was the case with me too. That she ruled out as soon as she had the brain scan and was sure somewhat before. She wanted the brain scan to be sure. I have the sypmtoms of it and the body reacts like MS but it is from the interstim.
You also need to file a report with the FDA and make it very detailed as to all that has gone one with you. Then you need to file a report with the Tennessee Board of Medical Examiners against this doctor that won't help you after he put it in. You call the board and tell them you want to file a report and they will send you the paperwork. You put in there also in great detail everything that has taken place and all he has said to you or did not say. Then he is investigated by your state board of medical examiners. First get your body taken care of and get the interstim out as soon as you can. You need time to heal and then go to a neuro and get evaluated on all. Even your pockets where the generator went.
I hope that helps you a little bit. I will be happy to talk to you if you want to talk more.
My neuro has been a real God send for me and I am so grateful I have her. I have a great deal of pain and she has worked so hard to help me find ways to lower that. She also helps me with how toos on getting around. I use a can and wheel chair for distance. I don't have a long period of standing ability. She also told me this last time to get a chair for the kitchen that is high and on wheels and use it for cooking. Like a bar stool type chair. I really like her because she is doing all she can to help with a problem someone else caused and refuses to take responsibility for and I get no help from.
One more time..try not to panic on the MS..I too was checked for that as my symptoms were like it. It was all connected to interstim.
You take care of yourself and the best of luck to you.
You will be in my prayers.
Dusty

[Raelynn]

I have had Interstim failures also. A nightmare! I have had a total of 5 surgeries to date (not including test implant, by the way). I believe you will find "hesitation" with people because if they are smart enough to sue for damages incurred - they would be instructed NOT to post on a web site regarding details. It is my suspicion that most people encountering the damages that are caused by these devices would most likely pursue it legally. The first device bled alot at first, then subsided with the bleeding but about two weeks later developed a hematoma (suspected) and became infected causing INTENSE SHOCKING. 1st device was removed causing 3 day hospital stay and 8 weeks of packing the wound, 3 times a day to close it (visiting nurses at a pretty penny!). Device #2 (other side) - implant involved staying in hospital only overnight. Experienced some bleeding (not bad that time) at first, then infection again after 4 weeks accompanied by SEVERE SHOCKING again, nerve pain and a feeling like the wires were being "pulled" every time I moved. Device had to be removed again. The surgery to take this device out was UNBELIEVEABLY PAINFUL....excessive bleeding, cauterizing, BOTH wounds had to be packed 3 times a day for 9 weeks after an 8 day hospital stay on the morphine drip (I still spent EVERY day crying and screaming to the point they had to move my room!) - I'm no baby - I have weathered 13 abdominal surgeries that couldn't compare to that!!! The doctor kept telling me that if we could "just get my body to accept it....life would be better off catheters....and I was DESPERATE to get off catheters because I am not anatomically conducive to cathing every time I have to urinate, which causes other problems. I agreed to try "one more time". Device #3 (surgery #5) - two days in hospital. Still have this device - have had plenty of problems, but have not developed infection/hematomas causing removal. Still have shocking, nerve pain, numbness in legs and feet, tingling, involuntary movement with legs and feet, etc. The other disconcerting thing is: the longer the device is in - the less it actually works! The doctor has recently informed me that "over time the nerves can become "desensitized" and not respond to the stimulation!!! I am AMAZED to just now being made aware of this! I sure would not call less than 1 year "over time". I am now stuck with: TOO AFRAID TO LEAVE IT IN and TOO AFRAID TO HAVE IT REMOVED!!! Approx. $200, 000+. has already been invested by the insurance company in only one year and I am inundated with thousands in bills for the portions they did not cover and can't see how I will ever regain ANY measure of credit again. The Interstim has horribly affected EVERY aspect of my life. If ONLY I HAD KNOWN!!!!