interstem problems

[debbie40]

I'm looking for people that have had problems with their interstem implant and their experencies ie: back, stomach, knees and legs.
I recently had an interstem implanted and it has gone drasticly wrong. looking for anyone that had had the same reaction.

debbie

[Jazzy Baby]

I had lots of problems with the interstim, and still do. Even though I had it removed in March, the pain has not gone with it. About 2 months after I had my permanent put in, the device went haywire, and started shocking me, and the stimulation moved to my spine, and the docs, nor the rep could get it to stay where it was supposed to be. I started getting really bad pain in my lower back, up my side, down my legs, in my ankles, and toes. They figured out that the device was faulty, and had reprogrammed itself back to the original state. They wanted to replace it, but I wouldnt let them, I told them to just get it out of me. They waited over a month to get it out, and I was in horrible pain the entire time. After it was out, I thought the pain would be gone, nope, its still here. I have bad pain in my spine, and down my legs to my feet. I am currently on nuerontin for it, but it doesnt help. I am getting ready to call my uro right now, to make an app. to find something that might help me. Good luck with your removal, I hate what this thing has done to me.

[deborah b.]

Debbie40 I respond to your question look back.....

[chady]

Yes, there are terrible problems with this interstim product. I just had mine out last week after almost 16 months of pure hell. My legs,my spine,even the bladder was effected,nerve damage,cannot walk,sit or stand long at all due to the interstim. Will be going into physical therapy now as soon as I heal to try and help. Mine too was a serious problem from day one. Jazzybaby and I both have serious damage from it. It has completely changed my entire life and not for the better. A neurosurgeon took mine out to help prevent any further damage. It also took a long time to get someone to take it out. The surgeons putting it in refused and Medtronic refused to help me once they knew they could not have the device. This is an ongoing nightmare for many and Jazzybaby and me will both tell you it drastically changed our lives for the worse. These things do malfunction and more. Everyone please before getting this insist your surgeon sign an agreement with you that he will take the device out at the first sign of trouble and that you get the device as it is yours. I received in the mail well over 100 adverse reaction reports from the FDA..on Saturday. I requested copies of their reports under the Freedom of Information Act..they photo copied the adverse reaction reports that were sent to them and sent them to me. I cannot believe what I am reading in these reports...the problems that Jazzybaby and me are having is repeated over and over in these with others....and even worse reactions to this interstim..it makes me wish I knew about this before and that the FDA was keeping track of those with damage. I am convinced now more than ever at the first sign of trouble it should come out and I am also convinced more than ever after reading these that this product needs far more reasearch and until then it should not be put into anymore bodies and the research should not be done on us. Those of us with the damage are paying a high price and alot of us the damage is irreversable. I am convinced researchers will find a cure for IC and even more helps than already available very soon.....interstim is not it and definately not at the cost of human beings well being and their quality of life.
Chady

[Dawn Marie]

I had my interstim put in Feb. 15th. Ever since I have been having cramping in my toes to the point where I limp. They have tried all of the ajustments and leads. Now on Sept. 25th I am going in to have mine redone. I know alot of these posts seem very depressing, but I am still hoping that this will help with my pain.

[Teri]

Dawn Marie~ wishing you the VERY best outcome biggrin.gif I know the miracle this device can be and am sending prayers your way......

tons and tons of hugs~

[deborah b.]

<img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> I'm having problems with mine. I woke up this morning with tingley in both of bottom of my feet. Also been having cramping to with my legs, feet and toes for about 5 weeks. I tryed to call me doctor today and the girl so that he was in surgery and wants me to see the rep next Tue. But I told her I want to talk to the doctor to tell me want is going on... Does anybody have problems with tingley in there feet?

[chady]

Interstim is not for pain. For some it made the pain worse and I was one it did that too.
My legs,feet and all tingle and go numb....deborah.
Please research this interstim and read that it is not for pain.
Pain is horrible and I wish your pain was gone. They do not tell you anywhere in the literature this is for pain. I know you hope it will help that and maybe you will be lucky and it will.
Chady

[deborah b.]

Chady you do not understand what I am saying. I did not have this put in for pain but I think the problems is coming from my interstim!!! I've have had this in for about 15 months and this just started about month ago.

[chady]

deborah b....I know you did not have the interstim in for pain. Others have or are considering it for pain. I also know from talking with you that you are having problems with your legs and so on from the interstim you think. I know you went through test to see if, it was something else. I am sorry you are having so many problems and this has gone on with you for sometime now. Maybe it is time to talk to your doctor about taking it out if, you believe it is your source of problems in your lower extremeties now. It is not worth the risk of even more problems if, that is what is causing your problems. You and I have talked for a few months now about your problem and you constantly say you did not have those problems in your feet and all till the interstim...my thinking would be maybe it is time to consider having it out as alot of time has gone by and you are no better. It appears your problems tend to get worse instead of better. I was just laying here as I rest from having mine out...and was thinking of you tonight and all you have said about yours. I was wondering why you since you feel it is your source of problems that you have not mentioned taking it out. I knew right away it was my source of trouble and right away sought to get it out. I would not wait too long to make that decision if, you are thinking that is what is wrong. I hope this resolves for you soon as you have dealt with this issue a long time now and it is not getting solved for you. Please take care. I have hoped for a long time you would feel better and I will continue to hope and pray that for you.
Chady <img src="graemlins/hi.gif" border="0" alt="[hi]" />

[deborah b.]

<img src="graemlins/hi.gif" border="0" alt="[hi]" /> Chady I have apt with the rep on Tue. and hope to take to the doctor to. What was your first simpton you had with your interstim when you where having problems with your interstim? I hope you are feeling better!! <img src="graemlins/angel.gif" border="0" alt="[angel]" />

[chady]

deborah b....my symptoms started within an hour or two of my tester being put in. I had severe pain in the area of the lead wires. I had pain shooting down my leg and into my foot. I could not get up or get down. I was in Colorado for this and my friend was with me. We could not get me into the car as the pain that shot down my back and into my legs felt like someone had hit me with a severe electrical jolt. This was not what I expected at all that day. Soon after the the real deal was put in and I started immediately having constant programmings to try and get it out of my leg and foot. My foot would bend uncontrollably with each sensation at the arch. My foot would soon start to feel numb and tingly all across the one side along the big toe. At times depending on if it was worse than before that foot would turn color and loose its circulation. My foot would bend so bad at the arch that I had to keep a tennis shoe on to try and help. This only caused the foot to swell by nightime. When I would lay at night the entire leg would move with each sensation and the toe would pull completely up. I could not sleep and was getting very sleep deprived so I started turning the interstim off at night to help relieve what it was doing to my leg and foot. I wasn't going to waste a phone call on the doctor to know what I needed to do to help me...I would try turning it down and then off due get relief. There was no way I would of kept that turned on considering what it was doing and the pain I was enduring. I walked with a serious limp and started to get where I could not walk far at all. I eventually go to where I could not sit and still sit with my leg up under me to take the pressure off my spine. As you know mine is now out but, it was there for 15 months to do its damage. Mine never 100% turned off...even in the revision I had when they moved it from the left to the right it remained on and we all thought it was off. Mine also after I'd leave the doctors office would reprogram itself. I still have the numbness,tingling,loss of circulation,pain in my leg and spine. My feeling in my big toe area and along my foot has never returned. The mobility in the leg that was effected the most is still very weak. The pain in my spine is severe and there are times all I can do is lay on my side off of it as sitting gets to be too much. I too had the cramps in the legs. My bladder actually hurt worse. When I turned my interstim off I first turned it down as low as it would go because we knew it was not turning completely off. That is when I knew that it was making my bladder and urethra hurt worse. The severe pain I was having in my bladder stopped. It had been so severe I would bend over in pain. The constant trips to the bathroom stopped also after some time went by.
My legs have never come back to before this. The foot only does not bend anymore because there is no interstim sensation. My spine now has pain and problems to above the waisteline as it has traveled. I read alot where people talk to the reps. This I do not understand as they are not doctors. If Medtronic is not going to help us when these problems arise and I called them many times then why would the reps know what is going on. I do not understand this business of the reps. Why aren't the doctors being more concerned with these problems also when we report them? Yours has gone on for awhile now and I do not understand why they do not say to you they need to take it out. I also am reading where there are many revisions. Those revisions are also doing damage as they are going back into that area once again. The neurosurgeon that took mine out said to repeatedly go into those areas is causing damage itself. To get my leads he opended me to the side of the spine as he did not want to operate in there once again. I have alot of scars and look like I have slits for pockets on both sides of my butt and probably should do like Teri is doing and get a tattoo. I thanked him for going after the leads that way as my spine area had been operated on three times and the nerve damage there is alot already....so he gave me another scar but it will be worth it.
What is up with the reps? This I do not understand. Why aren't the doctors answering these questions for their patients when this arises? Are they for the most part like the doctor I had and he either can't or won't answer questions. He never answered mine about what was wrong when I asked. I asked alot too and so did the people that witnessed how I was.
to him I say <img src="graemlins/toilet.gif" border="0" alt="[toilet]" /> with you mister and to Medtronic I say down the <img src="graemlins/toilet.gif" border="0" alt="[toilet]" /> with and thanks for ruining my body for the rest of my life and offering zero help.
Chady

[deborah b.]

Chady, I went water aerboics last night and had hard time doing it because my feet hurt me. When I got up this morning my feet are hurting and cramping on me. I took advil and is not really helping me. I can't to see the doctor on Tue. It making hard to deal with plus taking care of my MOm. I hope you feeling better Chady!! <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[chady]

deborah b...I am sorry you are having so much trouble and hope you feel better soon and get some kind of resolution to your problems. I hope your doctor is able to help you. I am not feeling well since my surgery as I had too many of them one right after the other. I have congestive heart failure. Sending my prayers. frown.gif frown.gif frown.gif frown.gif
I cannot believe this. What I have gone thru from the interstim has really taken a toll as I was so healthy before. Best of luck to you.
Chady <img src="graemlins/eek.gif" border="0" alt="[eek]" />

[Dawn Marie]

chady, Did you have congestive heart failure before the interstim? I have no idea how old you are but I am so sorry that this has happened to you. I will keep you in my prayers, as you have been through so much.

[chady]

Dawn Marie, No I did not have congestive heart failure before my interstim. I was in very good health excpet for the IC. I was just recently turned 49. I just had too many surgeries with this and so many problems that it took a toll on my body. Thank you for your prayers as I really need them. My lungs keep filling up with fluid and makes it very hard for me to breath and I get exhausted. I appreciate your prayers. Please take care of yourself.
Chady confused.gif frown.gif

[deborah b.]

<img src="graemlins/hi.gif" border="0" alt="[hi]" /> I've got apt with my rep and hope to talk with the doctor tommorrow about my interstim problems!!! Those anybody have problems with cramping with there legs, feet and toes. and have tingley& numbness in there feet. Other night a had tingley up my back and down in my arms. I would like to have feeback today if anybody has any of these problems with there interstim. I've had the interstim in since last April 2001 and revision done in Aug. 2001. These problems started about 5 weeks ago. Everbody have a nice day.. confused.gif

[Kara]

I had small problems with my Interstim. I had leg and toe cramping but it was fixed with the correct adjustment. I had 6 adjustments before they finally got it right. The problem seemed to be having to wait for the darn Medtronics Rep.to come out to do the adjustments. He takes care of all of New England and the surrounding areas so he is a bsuy man. There was only one of him to thousands of patients. Waiting when you are that uncomfortable is disturbing. I hope you find the right adjustment soon and get some long needed relief!


Best Wishes,

Kara in MA <img src="graemlins/banghead.gif" border="0" alt="[banghead]" />

[chady]

I cannot get over how this interstim is handled so differently everywhere. That may be part of the problem with this is that there is no consistency in how they do things. In Denver I was reprogrammed for months on end up to at least three times a week...by the doc. In Iowa I was programmed by the doc's nurse who was trained to do that. I read this all be doning in so many ways. I do not understand why they don't do the same everywhere with this. Waiting to get help when it needs programming is very difficult. I would sometimes have probs on a Friday and could not get in till the next week and so you go through the week-end. I read the same thing on the revisions that are being done differently also. Why are they not following the same procedures with this and some docs do this all one way and some another way? Why are some docs giving adequate information to their patients and some not any or very little? Why aren't their guidelines that must be followed by all? I talk with discouraged from Denver and she is going for her test tomorrow...I have answered all her questions and told her what to expect as she wasn't given any info.....and she got some off the boards. Seems to me there needs to be stronger guidelines for this and maybe there would be less problems later.
Chady

[deborah b.]

Hi!! Chady

I can not wait to see what the rep and doctor tells me tommorrow about my interstim. How are you doing?? I hope you are okay. I hope I will get some of my questions answer.. confused.gif

[Teri]

Sometimes we are so desperate that we don't ASK the right questions. We are just so happy that there is some hope that we can't see beyond that. So, all of the blame doesn't fall on the dr's.

Some of the dr's in the US have learned to do the adjustments, or have someone in their office that is qualified to do them. Having 3 adjustments in one week is a bit much. Doesn't give the sacral nerve time to 'think'. I know that when I was having problems waiting for an adjustment I would simply turn the unit off. I go thru periods of where I go into complete retention mode and I have to turn the unit off.

This trend seems to have turned into all negative and no postive which is not a good thing for the girls who are considering having this procedure done. There are so many 'ifs' involved in this and they are not being covered. What works for one person may not work for another. Just because one person has had to have dozens of adjustments does NOT mean that everyone will. Just because one person has to have a revision does NOT mean that everyone will.

This procedure is still new and still HAS NOT been FDA approved for the treatment of IC....let's not forget that. It's a tool to help an IC patient but it's not the miracle that we all pray for.

tons of gentle hugs to all~

[chady]

You are right on the fact this is so new and not FDA approved....we cannot forget either that there are numerous people with injuries from this. Guidelines must be stronger and how the docs handle this must be more consistant....as in constant reprogrammings like I had.
There may be people concerned and afraid when they read about this negative stuff....I never heard anything so imagine my surprise when I found out that there were all these problems nation wide. My first response was......"You knew about these problems and injuries?" I ran into problems getting mine out as doctor's had heard of these problems with Medtronic's and they did not want to get involved.
I am sorry if this information causes fear in some. This is where those with the injuries leave the boards. I talk to women by private email and I hear over and over that they will not post their truths here .......or the statement they do not feel comfortable doing so. I can tell you this. I am aware of only two of us that have injuries that post. There are so many with injuries that one manila envelope full of adverse reaction reports to me is only part of those reports.....as the envelope cannot hold them all....and these are sheets after sheets of reports of damage......"Who is helping all these people in these reports...each sheet represents one person.....and where are all these people?" Not here. I sometimes wonder if, we need our own support group because our added health problems are more now. I am angry for all of us with the damage...we were lied to as I hear over and over,we were mislead,misdirected and left with this by the docs and Medtronic. We do not count that has been the message loud and clear.
Chady

[deborah b.]

<img src="graemlins/banghead.gif" border="0" alt="[banghead]" /> I had my apt with my doctor and rep yesterday. So the rep tested my interstim and reprogramed it. But she could not give me a reason why my feet are tingley and the cramping. And the doctor did not give me any reason at all about it so we decided to get my back X-rayed again to see if the lead has moved. Maybe I may go and get a second oppion about my interstim. I've got a apt this afternoon to get some places of my neck and hand down in Wheeling WV at plastic sugery office. I hope everybody is doing great!! Deborah <img src="graemlins/hi.gif" border="0" alt="[hi]" />