View Full Version : Help! Anyone else with whole body nerve problems from Interstim?

11-02-2005, 02:43 PM
:) I'm so glad I found this message board!
I need to know if anyone else has experienced nerve problems with the Interstim throughout your whole body?
I have tingling, burning, cramping, almost like your limbs are falling asleep, painful sensation that travels through my legs to my toes, up my back into my shoulders, down my arms into my fingers, and up my neck. I went to the doctor today and everything is fine with the device itself. My doctor had no clue why my Interstim would be effecting my upper body. It does not hurt, tingle, and get real sensitive with the interstim turned off, only when it is on. I have had this sensation for months and only got better after I turned the Insterstim off for a month. I can finally now stand to be touched. With my nerves being so raw, just to be touched or for my clothing to rub against my skin sent shock waves of pain through my limbs. (like I was over sensative) I also have my arms and legs jerk out of the blue.

I have the Interstim turned off for now until the doctor calls Meditronics Corp. and hopefully gets some answers to what's going on. So now my I.C. is flaring up and making me absolutely miserable again. I don't know what is worse the nerve problems and pain or the constant urinating, leakage, and burning of the I.C. The Instrstim did help me with the leakage and constant urinating not so much with the pain; when its working. This is not the first problem I have had with the implant. I have had the wire moved because it was killing my legs, I have constant pain were the unit is implanted-the corner of it sticks out and is very painful, and were the wires go into the sacrum all my nerve endings are real close and I always have to go in to get the wires repositioned. Sometimes I wonder if it was really worth it but it was kinda a last resort for me before getting my bladder removed. ( getting my bladder removed scares the heck out of me plus you still have the I.C. so for me it is not even a consideration)

I would really appreciate your response. I have been through so much with this Interstim and I.C. I'm just so appreciative of this message board and reading all your stories. I wish I would have found this years ago, I can use all the support I can get. Please let me know if you have any suggestions or solutions for my problem so I can discuss it with my doctor and see if we can figure out what is going on.

Once again, Thank You and bless you all! I will remember you all in prayers tonight!

11-03-2005, 05:50 AM
I'm very glad you found the IC Network. Hopefully you'll get some answers from others who have had problems with interstim. I agree that seeing a neurologist would be a good step for you to take.

Sending warm healing thoughts,

11-03-2005, 06:31 AM
Thank you Tracy, Dustin, and Donna!
I'm calling a neurologist today. I have never had these problems before I got the Interstim. I'm very disappointed. I wish I would have found these stories a year ago I would have never have had the implant. I'm so scared I'm going to have permanent damage to my nerves. You all have been very helpful and I can't thank you enough for your care and concern. I'm 35 years old and hope I can lead a normal life some day. (Don't we all though) I will keep you in my thoughts and prayers. Good luck with your fight. I have a long road ahead of me and hopefully I'll find some answers, I will keep you updated and hopefully this will help others. I would like to find some good in this mess to keep me going. I appreciate your support - it brightens my day and life just to know I'm not alone. Its just so sad that you go through so much and have no answers from the providers of your health care. I think lots more research should be done before the continue to put the Interstim in anymore patients. For those of us who have had the problems and no answers it is a scary road on top of everything else you have to deal with having I.C.
Once again thank you so much!

11-04-2005, 03:13 PM
I had a successful trial (08-29-05) & then went on to the permanent (09-13-05), but had to have the leads replaced & anchored because the lead migrated (10-25-05). I had it set at 8.5 or higher and barely felt anything. Now I have it at 2.3 and totally feel it better than ever before. When I had it set that high I did notice tingling, especially in my hands and feet. But I didn't put it together until I just read your post (thank you so much!!) I have not felt that pins & needles in my feet at all and only once in my hands since the 3rd surgery. Of course, having it repositioned wasn't a joy ride. It was surgery. I didn't even realize that it was in a bad position until serious pain started. My Doc did an x-ray and could easily see that it had moved.

Deciding on another surgery was totally up to me. I had 3 options. Live with it. Remove it. Try 1 more time to fix it. I figured since the trial was a huge success, then it was worth it to try.

How high do you have it set? Could the lead have moved? Is it causing other pain? Could you ask your Doc for an x-ray to check position? Be your own advocate and chose for yourself whether or not it is worth it. Is the IC better now than before? How is the urgency/frequency retention/leakage? Is this a tolerable side effect?

Good luck & God Bless.

11-05-2005, 04:46 AM
I am glad they were able to help you and things are better. That was a real blessing.
Hope now things continue to get better for you. I know what it to cath all the time
because I do that. I am thankful we can have that option though to cath. That would
be awful if there was no way to empty the bladder on our own without a doc.

Good luck to you,

11-05-2005, 05:22 AM
I have decided that I am too much afraid to have an interstim. Knowing about how many problems it can cause is enough to make me see that this just is not for me. I hope my doctor understands or I will have to change doctors.

Dusty, I am sorry you are having so many problems.


11-05-2005, 08:56 AM
This section of the boards was set up just for people like you, me and the others with
problems from interstim. I would not worry about any problems on here. You need to feel comfortable posting even the negative things as well. This is how others going through this know they are not alone. This how others going through this know there are people that can relate and support them. It is very hard when something you thought was going to help you ends up causing some problems. The purpose for you being here is to get help and in voicing what your dealing with in turn you will help another. The bottom line is that your having problems and you need help. You came to the right place. I am sorry your having problems. The nerve problems your having I a sure are of a real concern to you. I would not worry about scaring anyone either. As interstim is big step medically for one to take. So knowing what people that have had problems have to say is very important. So what you have to say is very important to those that are considering it and those that are going through what you are. I am glad your here. I am not happy your having trouble. I hope they can get to the what the cause is. Are you seeing a neurologist as well since you are mabye experiencing nerve problems?
Thank you for coming here and telling your side. I appreciate it. I know others who have run into this with interstim are also.

11-05-2005, 10:10 AM
I do agree that since you are having problems you should go and see a neurologist.
If you believe it is the interstim have it removed..

11-06-2005, 07:07 AM
I decided to delete my last post. For those of you who read it I was just depressed and having a pity me bad day. I am just trying to pull myself up by my boot straps and buck up. I am just discouraged right now. I've been calling neurologist and finding out they are so booked the closest appointment date I can get is in January. Plus I know I won't hear from my doctor for quite awhile because he's waiting on Meditronics to call him back with answers. My I.C. is so very flared up. I actually kinda forgot how bad it can be without the Insterstim. So in a way the Insterstim is a good thing. My legs are still tingling and numb even with the Insterstim turned off. I just am getting antsy for answers. I'm just so very thankful I have support to get through the bad and good days and you continue to stick with me. I will update if and when I get more answers. Still looking for some relief and answers, never quit-never give up-I'm not going to let this win. I can never thank you all enough for the support. You give me the spirit and strength to not ever give up. You are my :angel: 's

:grouphug: X-tra big hugs and thanks to Dusty and Tracy for all your x'tra help and support to everyone and ME!

11-06-2005, 04:01 PM
:grouphug: Hugs to you for going through such difficult times. I too had an Interstim implant and some complications afterwards. Mine was implanted in December 2004 and removed in 2005 due to the unit itself migrating up into my back and my entire back and pocket where the interstim unit was was so full of infection. My uro told me that the infection was life threatening and we (hubby and I) elected to have the unit removed due to all of this. Since then I've had some trouble with my legs giving out when I'm sitting and trying to get up. My legs go numb alot and the pocket where the unit used to be is very hyper-sensitive. If someone even touches it, it sends pain spasms up my back. I never received any pain benefits from my unit but it did cut down my frequency/urgency in 1/2 but had to have it removed because it was moving around in my back and the infection.

My best advice is to do what we did and call Medtronic's customer service right away and tell them what's going on so it can be documented for possible future information and then call your neurologist and tell them that you're experiencing severe side effects from the unit and that it's migrating around you lower back and demand an emergency visit or see if someone else can see you possibly. When I called Medtronic about mine, they called my uro and helped me get in the NEXT day. It's nothing to mess around with.

A dear friend of mine has had unreversable complications due to her Interstim and it's a daily struggle to keep going. Please don't give up, keep calling your doctor and let them know what you're going through.

I'm not one to preach and I know that this is very controversial and the Interstim has helped many and those are really "for" it, however, for me it was the opposite as well as others who share complications.

I'm just worried about you and hope nothing permanent becomes of this situation and you don't end up with any infection. Is your pocket filled with fluid at all, that's the first sign of infection.

Keep us informed and if you have any questions, feel free to send me a private message and I'll answer what I can, alright? I wish you luck & let us know how things go.

Tracy K.

11-06-2005, 04:55 PM
Hello all, I have not been on here in a while. My interstim was permanently implanted March 2005, I am having the same problems. My legs feel like they are going to fall off they ache constantly and sometimes it is immpossible to move them. My URO told me last Thursday that she wants to move it to my left hip ASAP. Has anyone here had thiers moved. She seems to think mine has not healed properly. I am scared to death...I know how it felt from the first time and how sore I was now they are going to take it out of the right side and put it in the left side. I will be cut in double. Any suguestions. I have cried for 4 days about this. I also have mine off now and I am not feeling the problem in my legs. Even my neck hurts terrabley. If anyone can help please email me at kmbrlywds@yahoo.com Thanks for caring. And as always I will pra for you all.

11-07-2005, 03:14 AM
Ok sweetie first of all you have every right to be scared and crying. It is ok..not what it is going on with your body but that your so upset.
I had mine implanted on both sides..so yes that is done.
Please listen to me....get it out. I do not think at this point moving it is going to help you. I thought the same and no it did not. Others thought so too.
What is happening to your body is not alright at all. I have serious interstim damage.
What your experiencing is not what should be taking place. Your best bet here is removal. Your doctor may not agree with that but it is your body and it needs to come out. The problems you are speaking of are already serious complications.
Try not to panic sweetie your not alone as many have gone through this and are here for you. I know this is soooooo scary. I have been there myself and so has Tracy and others. A lady wrote me on these boards ages ago when mine went so bad and she told me the same thing. I am so glad I did. Once you have it removed you need to go see a neurologist and you have healed you need to go see a neurologist and have full evaluation done.
We are all that have been where you are here for you.
Let us know how you are so we can help you through this.

11-07-2005, 03:25 AM
I have a dumb question... do you feel the interstim sensation? if you do you may want to turn it down till you don't.. IF you still have the pain, shut it off, and consult further advice.... If you having bad pain from it I would say that moving the device is not going to help.... call medtronics patient hotline yourself...
sending you hugs and prayers.

11-07-2005, 03:39 AM
Yes! Definately turn it off. Then proceed with getting help.
I have had this product do this so I know.
Tracy, Patricia, Jess214 and many know.
Those of us that have experienced this are here for you.
Hang in there,

11-07-2005, 04:47 AM
Kim W, I strongly suggest that you consult with a neurologist before making your decision. And if the decision is to remove it, if it were me, I would want a neurosurgeon to do the removal. Just my thoughts, but I'd want someone who is skilled in dealing with the nerves in the spine.

Sending healing thoughts,

11-07-2005, 05:28 AM
Kim I am sorry about the problems. I got my first one in Sept 2001, then had a car accident and had a revision done in May 2005 due to lead migration. Also I lost a ton of weight and where the unit was upper left hip area stuck way out and got in the way.

The decision to re-do it was not done easily. I spent well over a year trying to find a dr who could do the surgery. So I had a long time to consider what I wanted to do. For me when the leads movement I had major left toe curling and my left leg would shock when I had to have a BM. During this time the orginal doc who did my surgery said it was normal. For me when I first got it done I had a 6 mths of relief. After the revision I am still having problems. Found out that out of 4 leads I only have 2 that work right. I dec. on the revision because I wanted to do the least inivasive thing at that time. But the surgery was HARD for me. Alot worse than the first time. I was not prepared. Granted I had 4 yrs of scar tissue to deal with, but I was miserable and was not expecting it. So beaware of that. I also had 3 inicision to deal with. 1 removal of old implant 2 insert new implant 3 removal of old wires and implanting new ones. My surgery took an 1 hr longer than expected due to damage and removal of old leads.

What you are experiencing is not normal, and I do not think its from not healing right. This decision is yours not the doctor and do not let the pressure into it. Some damage can not be reverse. If you need anything let me know.

I do not want to scare you about the revision, but I have been there and was not aware, so I only want you to know it could hurt really bad... :grouphug:

11-07-2005, 06:22 AM
Thanks so much to all of you who replyed. I am going to have a meeting with my URO before proceeding with this 2nd surgery. I feel like the recovery will be twice as bad. We heat by wood and that really conserns me as to how I will pick up the wood during the day while my husband is at work. How long did it take you all to recover? Was the 2nd one done outpatient or did you stay in the hispital? thanks for all the help.
God Bless

11-07-2005, 06:53 AM
I have tried every treatment except interstim....one ( Of the 7 uros I have seen) told me I HAD to do Interstim...I didn't want it after doing alot of research....I decided these uros had helped me all they could so I took it upon myself to research bladder removal drs..I went from Seattle to LA and saw a Dr at UCLA..I have surgery set for Dec 23rd, and until I can get it I have a Foley so I can have some sort of a life besides the toliet...I am so glad I did not do interstim....

11-07-2005, 08:19 AM
I have had the second operation. It is done on as an outpatient surgery. I went in early in the morning and had to get prepped and the i.v's in ect. for the surgery. I was then hauled into the operating room and the neurologist, doctor, anesthesiologist, and the nurses were all there. They did the moving of the wires from the right side to the left side. I was awake so I could feel were the pulse was going from the wires so they could make sure they had the correct placement this time. I really don't remember much of the surgery itself because they say the anesthesia they give you makes you feel like your drunk past the drunk point to forgetful and can't remember exactly what happened just bits and pieces. After the surgery I was moved into recovery. When the anesthesia started to wear off I had major pain where they moved the wires and around the device itself. So much pain I started to cry and one of the nurse rushed over to make sure I was o.k. It hurt so much just to go to the bathroom for about a month. I could not lift or do anything for 6 weeks. I mostly layed around in pain. They don't want you doing much after the surgery especially lifting, pushing, pulling, sweeping, ect.. because you could damage the wires I guess during that period. To this day from having it moved, it still hurts were the wires go quite a bit and I have a lot more scaring and scar tissue. Plus the end result for me is I still have the same problems and more. I'm sure you have read all I have to say in other posts and this is all after the second surgery to fix the tingling, numbness, heaviness, tow curling, ect.. in my legs. So in conclusion for me it didn't help and just put me through more pain. I hope this has helped you a little. I have sent a private message your way with more detail. I'm here for you as others. I too cry and am scared but everyone here has helped me so much. I will keep you in my thoughts and prayers.

11-07-2005, 04:09 PM
Thanks to all of you. The surgery you are having IMUSTPEE is it to remove your bladder??? I was a little confused. I have a cousin who just got one made and had hers removed. She seems to be doing GREAT>>Better than I am.As for the Interstim surgery. I do not know what other options I will have since I already have it in and it is causing problems. Do you all feel that you would have been better off to have your Interstim taken out completely???I have had mine off a few days and the IC is back and raging hard, so what is worse the IC or Interstim??? HELP!!!!! I hope you all do not kind but I let my mom in on these comments, even though I am 37 and it is my decision, just wanted her and my husband to know what you all have been though. She has added all of you to her prayer list.
Thanks so much for taking the time for me.
Kim W

11-07-2005, 04:17 PM
What complications do you have now after having it removed?? Is the nerve damage permenant? Can we do something about this?? Medtronics should be responsible for this infraction. I never knew all this before I got mine. My DR. made it seem to be a MIRACLE>it has been far from a miracle. I could not even get out of the bathtub tonight alone, my husband had to help me and I am not a fat person, not skinny either..ha! ha! But that is not normal...my back and my legs are killing me tonight and when I tell the URO she says do you have plenty of pain meds??? I am sick of meds>>>>they make me feel like crap.I realize I am rambling on but believe me when I say I AM SO CONFUSED RIGHT NOW!!!! I want to make the right decision. My parents and my Husband are behind me 100% whatever my decision.
Thanks so much
and God Bless

11-07-2005, 07:36 PM
Kim...yes, after 39 years of IC running my life, that sucker is coming out and going straight to the garbage can for all I care.. :woohoo: ..I am getting a cystectomy and creation of a continent pouch. I can't wait!!! I have never been normal, so I am looking forward to seeing what that is like...instead of peeing 40 times a day I will "Pee" 4....

11-08-2005, 12:46 AM
I'm so sorry that you are having a tough time with the Interstim. It's like a constant battle of good and evil that plays over and over in your mind. It can make for alot of sleepness nights & extra stress that is NOT good for IC.

I also have the interstim implant (April 2000) and it has been a long road to haul. It has helped me tremendously with the frequency but the problems I've encountered outweigh the implant itself. I don't feel that I was given enough info on the implant, to make a sound decision. I wish I had seen these boards before I had the implant because I wouldn't do it all over again. I was working in a dental office until Sept '05 and had a tough time working around the sterilization equipment. I finally had to leave the job because of being jolted. I loved my job, coworkers, and particularly my boss. I really hated to quit but the pain in my legs and my lower back was more than I could handle. My hobby is photography & and I enjoy taking Sunday drives for photo ops. Sometimes while traveling the backroads, I come up on power stations that can cause me to lose control of my bladder. The implant will shut off by itself as a safety precaution, but not always quick enough.

I have to be reprogrammed on a regular basis because the implant will lose it's effectiveness. That means traveling 4-5 hours for Doctor appointments and sometimes staying overnight, it gets expensive.

I'm not bashing insterstim or Medtronic because it has helped so many other IC patients and I do have less frequency than before. I just feel that it is the responsiblity of Medtronic to inform Urologists of the pros and cons. Then it becomes the responsibility of the Urologist to have a consultation with the patients. Literature should be given and information provided.

I posted a message about premedicating for dental appointments a couple of weeks ago. I couldn't believe the response I got from other interstim users regarding the lack of knowledge about this subject. I was actually more surprised when I learned that some implantees weren't even provided a manual! It's scarey!!!

I would like to make a suggestion to you. Go to the Medtronic website, its web address is http://www.medtronic.com and click on "contact us". Send them an email and tell them what's going on. Or you can call them, they have numbers listed. I really advise being proactive here, because it sounds like the implant is failing you and you need help, now! You can't be playing the waiting game here, January is too far away! And don't wait on your Doctor who obviously doesn't know what to do either, because he would have referred you to a neurologist at your first complaint of tingling & numbness.

Good luck & please keep posting and let us know how you are, as I'm a worry wart by nature and this will keep me up nights!

11-08-2005, 03:27 AM
Thanks So Much I Am Contacting Medtronics Today. Do Not Loose Sleep Over This. I Will Be Fine.

11-08-2005, 03:02 PM
I hear where you are coming from, but I also vividly remember signing a waiver. My operation was performed at the Mayo Clinic in Scottsdale, Az & there policy is "all paper work -- all signatures must be completed at the pre-op appt." You meet with a nurse who explains everything. Each time they read every word of every paper to me & asked if I understood. My first pre-op was on a Thursday & the surgery was on a Monday. After each pre-op they sent me hope with a folder & encouraged me to read everything. It had everything I signed & hand outs on Medtronics & InterStim & possible side effects (not just of the unit, but of surgery).

I can't say I was less than full informed (heck, I was over informed). I went hope petrified!!!! I also had to sign a paper with huge print explaining that Medtronics says the InterStim last 7-9 years, but my Doc's experience that number was closer to 3-5. Differing sources had differing experiences & I was entitled to them all, but was responsible for choosing or not choosing for myself. They also gave me about 50 alphabetical phone numbers of InterStim patients (all across the spectrum of pos & neg experiences) to call & ask any question I had. In big bold red letters was a phone number to call & cancel the surgery after hours over the weekend, if I so chose.

I didn't do much research -- my Doc forced it on me.

11-09-2005, 02:33 AM
I did not sign any of that kind of paperwork. The only paperwork I signed was for the usual risk of going under anesthsia and risk of surgery. That was it.
I don't feel that matters though as in other surgical procedures that things go wrong people file lawsuits. I know there are suits pending on interstim.
I do wish doctors would stop forcing this on people. I think they greatly take advantage of women and the pain there are in when it comes to interstim. They need to stop that.

11-11-2005, 06:21 AM
I'm with Dusty. I too did not sign any kind of paper work but the usual. I did not even know the interstim lasted 7 - 10 years. I never saw any of the paperwork that Libby had to sign. I also felt the Instrim was forced on me and that it should stop. They made it out to be my only option and choice; otherwise there was nothing more they could do for me but remove my bladder. I had no idea there was any problems but maybe infection around the site of surgery, and the wires moving, and that you have to have the batteries replaced. That was all I signed beside the usual. I'm not feeling well today but I just had to respond because some of us never had the Doc who gave us research options. You are very lucky to have a great doctor and you should thank him for his xtra care and concern. Some of us just got pushed by the doctor and medical staff and they made it seem like it was no big deal and they have done lots of them with no problems what so ever. I seriously thought it was my answer to everything and my life would be so much better. Well it sure didn't turn out that way for me. We all need doctors to do what Libbys did ,then maybe we could make better decisions for ourselves. When I had my interstim implanted I looked it up on the internet and found very little info. about it but now there is so much info.

11-11-2005, 07:37 AM
That is one of the problems for those of us who got the Interstim several years ago. I also found not alot of information on the internet or from my doctor when researching the Interstim. Though he did not push it on me, when I developed problems with mine he and his staff told me that was normal side effects of the Interstim. Being that it is such a relativly new treatment not many side effects are known and the long term is really kinda of new also. Granted now a days you are able to find more information, thanks in part to this site, and doctors are trying to learn more, there are still some doctors out there for the money only and not really learning about the Interstim from Medtronics that they should. Hopefully in the future this will change and when someone needs a person to lean on they will be able to find it here with us....

11-12-2005, 06:03 PM
Hi all, I am reading all the interstim stories and wishing I had listened to you all in stead of my doctor last year when I had my stim put in. I too have had many complications all the ones you all said plus I feel like I have the flu ALL the time I believe I have a deep infection, so mine is coming out, I have had it "off" for 14 weeks now, the pain is lessened in areas, but my bowels are in a mess.(no pun intended)
My rep wnated to switch sides with me too, but there is no more padding on that side than the other, so what will that help?
I think for me the thing that upset me the most was that they sure don't tell you the truth about how long recovery will be , I was told that by 2 weeks I should be good to go, in truth it took2 months before the bruises and stitches went away, and two more months before I could walk stairs, and by then all the side effects had started.
But I still believe in the concept,not the product, which is why I am having bion done, it is tiny, no wires, no huge IPG, one tiny 1/8" incsion and well,nothing else works so.....
But yeah interstim is not ready for IC patients and my Doctor said so, he said it works best for incontenience,but when you are desperate it is easy to see hope where it really isnt.Medtronics rep told me that they really don't understand enough about IC to know how to use interstim effectively, that it is really patient trial and error that they are going with, that is a scary way to do business. But at $40,000 per I wonder where their mind really is?
Hoping for a better future,

11-14-2005, 05:09 AM
Sonja please dont beat yourself up for giving the Interstim a try. Unfor. this happens and hopefully being able to post our stories here will give other considering more options both pro and con. I agree about the healing. When I had my revision done I was not prepared at all for the pain I had. It was worse the 2nd time around.

Also because I lost alot of weight after having the first one when we did the revision mine could not be put back in the hip are due to no fat pockets either. He put my new one in the middle of my butt area. I do not sit on it and the only time it has gotten in the way is when I have had to get shots. It is right in the area where they put them.

Again dont beat yourself up over what if's. Just be there for others considering it and let them know what happened to you. Be there for the ones who choose to do it and also for the ones who now have problems.

11-17-2005, 07:34 AM
Dusty I am fine thanks for asking. I finally got my new computer 2 weekends ago. Here is my new email trishawalker123@aol.com. Email me anytime I enjoy them alot. My interstim is just that an interstim. No change really. I just dont want to fool with it. Right now the kids have me running in 20 different direction. My daughter is doing cheerleading and playing basketball, the middle boy is doing basketball. I think this week is the first week since school started that I have not had cheerleading practice and basketball practice 2 nights a week. Then they were having 2 games a week. They go to a small private school so for the away games we have to drive them. Plus my youngest had 3 f's and 1 d on his report card. He is in 4th grade. I put them in a really small private school last year and he got really far behind. He made is first c on a spelling test last week. So between all that and his report card life is hetic to say the least.

How are you....

Hugs and :kissing:

11-17-2005, 07:52 AM
I am just getting over the flu. So am finally feeling better.
I will take your email down and am soooooooooo glad your back on line. I have missed you and worried about you. I am just the same with my probs from interstim..had new test as the pain in my legs has gotten pretty bad.
Will talk to you about it.
I can tell you are quite busy with your family. Your a good mommy for sure.
Love ya,

11-17-2005, 08:40 AM
I feel like that without the Interstim!

11-20-2005, 12:46 PM
Hi there, to all of my ic friends, I myself had 2 interstims implanted approx 6 months ago, my dr. told me that it would be my last resort, if this failed then, i should consider having my bladder removed. Well, I wished that i had never, had the 2 implants, i have had a terrible hurt in my legs, that is just so un bearable at times, i can hardly deal with the pain. I, have discussed, this with my dr, he told me also, to turn off my interstims, and, if it still hurts, to go and c my family dr. Well, i did so, and i'm still dealing with the pain in my legs, i discused with my dr. if there had ever been any known cases, of nerve damage of interstim, and my dr. told me there had not been. I, would appreciate it if there is anyone, who has had the interstim implant, and has experienced the same problems, as i have to e-mail me back,

11-21-2005, 03:19 AM
Hi sweetie..there are alot of us unfortunately. Many are not on here all the time or
seldom. Many are dealing with alot from the interstim. I do as you know. And yes there
are people with nerve damage. I just had another gal tell me that her doc said the same thing. Well I asked her who her doc was as I had no idea and she lives in a different state than me. It is the same doc that did my third revision. I was so angry and like dang it these doctors are not telling. As her doctor knows about me and he knows he refused to take mine out. Now she is dealing with exactly what I did. She has the legs problems too. She has alot too.. She is going to have to do like I did and find someone to take hers out now because this jerk in Iowa City refuses. So no your not alone and yes there is nerve damage. I guess that is a lie they just can't bring themselves to be truthful about. I am so sorry you too are dealing with this. We are here to help you though. I am sorry about your legs. I have terrible leg pain. I know what it is like. Turn your unit off if it is not already off.
I am sorry. You may want to consider having it out. I am so glad I had mine out when I did. I had to search hard to find someone to take it out as doctors connected with it wouldn't. A neurosurgeon took mine out.

11-21-2005, 06:54 PM
Hello All, Kim Here In Tn, Just An Update, I Have Not Had My Interstim Moved. The Dr. Is Still Waiting To Hear From The Ins. Company, In The Mean Time I Am In Terrible Pain, So I Have Taken Some Of You Alls Advice And Made An Appt. With A Neuologist On Dec. 1st. What Questions Should I Be Asking Him??? I Know The Symptoms I Am Having But Is There Any Specific ?'s I Should Ask?? Thanks So Much For The Support.

11-22-2005, 02:46 AM
Kim, I would specifically ask about having the deviced moved. Sometimes it's difficult to get a real response from a physician --- I find that if I ask it by saying, "If your wife had an interstim, what would you do?"

Basically, I think it would be a good idea to write down all of your symptoms you are experiencing that you feel are related to the interstim --- and any questions you have. If you're like me, I can feel very uneasy seeing a new doctor for the first time and having that list is very helpful.


11-22-2005, 02:51 AM
Ask him to schedule you for surgery and take it out. Also ask him to seal it in a container as you would like to keep it. Medtronic likes to have these back but you paid for it with and so did your body. Then ask him if after you heal from surgery. Mine was taken out so easily by the neuro in no time at all. Ask him if he would do a complete evaluation on you as you are having difficulty and tell him what they are. Do not mention lawsuits as this seems to put a fear in doctors. If you don't make a big deal out of the interstim issues he should take it out. When they find this out they are concerned about being involved. Then just tell him all that your experiencing with the legs, toes, everything you can think of. Like is it effecting your bowels,your lower body besides just your legs. ....get everything that you know of at this time and write it down like Donna said. You kind of get in there and there is so much you can't remember it all. I will pray for you he takes it out for you. Then you can go from there to get evaluated and get help.

11-22-2005, 10:14 AM
Hi there, to all of my ic friends, I myself had 2 interstims implanted approx 6 months ago, my dr. told me that it would be my last resort, if this failed then, i should consider having my bladder removed. Well, I wished that i had never, had the 2 implants, i have had a terrible hurt in my legs, that is just so un bearable at times, i can hardly deal with the pain. I, have discussed, this with my dr, he told me also, to turn off my interstims, and, if it still hurts, to go and c my family dr. Well, i did so, and i'm still dealing with the pain in my legs, i discused with my dr. if there had ever been any known cases, of nerve damage of interstim, and my dr. told me there had not been. I, would appreciate it if there is anyone, who has had the interstim implant, and has experienced the same problems, as i have to e-mail me back,

I am going through what you are right now, also. I've had mine implanted for a little over a year now and have had surgeries to move the wires because they were causing me extreme leg pain. Well they did'nt help and I still have the leg pain your are talking about and more. My implant was also a last resort for me before getting my bladder removed (which is very scary for me). I can hardly deal with the pain and have just been told by my doctor that he also doesn't know of any known cases of nerve damage from the interstim but would call meditronics. Well he then called and told me meditronics said it was nearly impossible that the interstim was causing my tingling and nerve problems. Well to make a long story short. I know my doctor has seen patients with nerve damage from the interstim and knows all about. He saw them way before me, yet he denies it. You know why? Its the money. They are all in it for the money and not the patient. My doctors were good as gold to me until I started having problems with the interstim and said I wanted it out now they deny its the interstim and won't help. I have had it turned off now for 2 months and refuse to turn it back on. I'm getting it removed. I am just now looking for a doctor to remove it. That has been a hard road also. Please keep yours off. I know it is the interstim causing your problems, there are to many of us with the same symptoms for it not to be, plus I never had these kind of problems before the interstim and when I do turn my on my problems are worse. If you need someone to just talk to that is going through the same thing don't hesitate to private email me. I'm sorry you are also facing the same problems with no help from your doctors. I know how scary and upsetting it is. I am very angry right now and hurt by my doctors. I feel very let down. I also felt alone until I met a good friend on here that has helped me alot. I know we are all here to support you and only wish you the best. Once again I can not tell you how sorry I am that you also have to go through this. I just want to help get the word out and maybe save someone else from going through what we have to on top of the I.C. God Bless You! I will Keep you in my prayers. :grouphug:

11-22-2005, 10:21 AM
Donna and Dusty,
Thank you for all your advice for dealing with the new doctor. You have helped me also. For i'm in the same position as most the people who post on here looking for help. It is very true: i'm def. uneasy about seeing and new doctor and forget everything. You two are great help. God Bless you!
You make life easier when it is really hard to just get out of bed! I'm very grateful for all you who post and try to help others.

11-22-2005, 12:02 PM
mcgraapster I also had problems with my first uro, the one who did the surgery, when I started having problems with my Interstim. I know it was money for him, because I had lost my health insurance during that time. he told me the problems I had were normal. All of my toes on my left foot curled under and I would have shocking so bad during BM that I could not move my left leg. I would have to turn it off just to move my leg. It then took another 8 months to find a doctor here who could help me. It is a pain I know. I am still having problems even after my revision..

11-22-2005, 01:39 PM
are you getting the device removed? I don't recall seeing it if you posted it..
hope all goes well for you, and you don't have any more problems.

11-23-2005, 10:44 AM
No I did not write anything about getting it removed in the past because I wanted answers before I made my final decision. So I could make this decision with knowledge this time. When I had the implant implanted I only heard the good. Not what could happen. I just wanted to make sure I made the right decision this time and the right decision for me is to get it removed. I also wanted to see if Meditronics or my doctor were going to help me with the problems I am having but they are in great denial about the problems and have been. l live everyday in worse condition than before the interstim and I do know it is the interstim causing my problems. I had one of the best doctors and he will do nothing to help. I have lived a year in horrible pain and have many things done to fix the prob. with the interstim with no relief so it is time to get it removed. If it doesn't work properly and causes more harm than good it is time to have it removed. I have done everything in my power I can to get it to work properly and have success. I had great big hopes for my life with it and they have been crushed. I feel I have no other choice. If anyone has any other options i'm willing to listen. I am not getting it removed because others have made me feel like I have to. It has been something i've been concidering for months now and have done all the research and contacted all the right doctors and meditronics and have made this decision. I'm happy it is a life savor for some but for others it is our worst nightmare, only you can't wake up from it and every turn you take you are being critisized for your problems and wanting it removed. :headbang: It seems like everyone is so much denial over the nerve problems and damage when there has been so many of us with the same problems. :hmm: The only conclusion I can get from that is: it is the insterstim. I also know my body and that it is the interstim. So to make this long story short. The interstim is going to be taken out of my body and hopefully I find a little relief. ;)
Thanks for everyones care and concern. I do also hope I have no more problems. God Bless You all. I will update when I know more.

12-14-2005, 06:13 AM
I am sorry that I haven't posted back.. I had so much to do befroe my hysterectomy on the 28th on Nov. I think you should do what you think is best for you.. Advice is gret info, but in the end it is your body, and you know how you feel. I think it is great that you have researched, and horrible that you are in a bad sitituation.. If you are going to have it removed I think tat is best for you. There is no reason to keep it in if it is hurting you and you are worse off then before.
Keep us posted and let us know how you are doing after you have it removed.

12-14-2005, 01:16 PM
I will be thinking of you, I am having my interstim removed Dec 28th, but I have been in the hospital for over two weeks due to the infections it has caused. They had to clear them up prior to surgery to prevent spead (it is staff infection)
So I havent posted for awhile, I am on at home IV therapy for one more week then one week to rest my body for surgery, which I am told I will be an inpatient for up to a week!!! All because I wanted to feel better.
Hopefully I will have no permanant damage and I hope you will be the same.
I am going into the BION program after healing and I will hope this is the right choice for me, as nothing else has worked for me. I wish you all well, and I am getting to keep my stim unit in case of further need ,I have heard that there is a lawsuit and I want be make sure I get to keep my unit, as I hear medtronics does not usually let you keep it. Why? Do they have something to hide? We are not even contacting medtronics about my removal as they would try to interfere. I have heard it happen too many times.
I hope your hysterctomy went good, and you are well on the waty to healing, Cindy.

12-14-2005, 01:50 PM
Sorry to hear of your troubles, I am so glad you were able to get it removed and will start to hopefully feel better. Take it easy and sending extra thoughts and prayers to your recovery.

12-14-2005, 04:58 PM
Hello all, Kim here, Well lets start by saying I had the interstim moved from my right hip to the left on Dec. 6th, today the 15th I just got out of the hospital. I went in on Monday because of a fever. They said I did not have infection just inflamation. The site where it was remaoved is doing great. But the new sight is very sore tender and bruised. They seen to theink after all the antibotics and the pain killers that I should be fine now. I am not to cut it on for a few more days. I will keep all of you posted.
You are ALL in my thoughts and Prayers..and especially here at the HOLIDAYS!!!

12-15-2005, 02:28 AM
HUGS KIM, rest and feel better soon. We will all be waiting to hear how your doing.

12-15-2005, 04:19 AM
hugs sonja I hope that you heal quickly and have no more problems. I also hope that bion is your salvation.. sending you lots of hugs and prayers..

Kim I am glad you are doing better, I hope that you are up and around soon and the pain and brusing all go away quickly.

12-15-2005, 09:31 AM
Sonja I am so sorry and I hope you start feeling better soon. I am glad your doctor will remove it and I also would not let Medtronic know and like Dusty said have it sealed. Also make sure you report your event to the FDA's MAUDE watch site so it can be noted that you got an infection from yours. This is the only way we will be able to have our voices heard when something happens.

Kim when I had my revison in May and had it moved from the right hip to the bum area I had a harder time also. I stayed in pain for a good 3 weeks....I hope you start feeling better soon.

12-19-2005, 05:56 PM
:kissing: :kissing:
It is so wonderful to know I am not alone going thru this mess, yoi all have been such a support, never telling what to do, just giving much needed advice abd a shoulder to cry on when my dream of a miracle cure turned into a nightmare rhat I cant wake up from.
Such a huge part of this whole interstim "experience" is the emotional roller coaster ride. I had to go back on anti depressants, having the rug yanked out from under me was tough. I think I knew right away that the implant was not a suscess,but I just wasn't ready to let go of my dream, so I decided to take up residence by a river, you may have heard of it, it is called DENIAL :loco:
I feel for all my friends out there who have had to let go of there dream,it is like a death of sorts, the death of the life you want and was being held out to you to get,it sounded so easy..........should of known,nothing in an ICers life is easy .
So now I am praying the pain in my legs and tailbone and hip goes away when the stim goes away,,,,,,please pray for me that this isnt permenant. I pray I dont have longterm nerve damage, my Doctor is pretty honest, he said up front it was a possibility that my nerves could be damaged, but all I could think about was how winderful I felt during the two weeks of the trial.
I was out of pain,freqeucy/urgency like a normal human, it was incredible.
That was the only rhing I could absorb.......just put in the stim and I will be normal....I was high with excitement....I fell a long way down to earth and iy has been painful in so many ways.
So, I guess it is time to pick myself up,dust myself off and move forward.
But, I will not lie,if they have damaged my poor abused body permantly, well, I have a good med-mal lawyer and I won;t take it laying down, I will fight, not just for me, but for all the other's who had a miracle shown them and were given a nightmare.
I may be down girls, but I aint out yet!! And I am fighting mad and as my grandma would say"fit to be tied".
Anyone else ready for a fight?
There is gonna be some honesty told to potential interstmers by the company whose name I won't mention, even if I have to sue to get it said.
Thanks for letting me blow out some steam,I am nervous, only 9 days until removal, and I am more afraid than I have been about a surgery than I have been in many years, I will be so happy to be on the ither side of this surgery, bruises,drains,stitches ans pain notwithstanding,,,,I just want it over!!!! :headbang:
Dusty a special :kissing: and thank you, you have always responded to my posts and been my angel. :angel:

12-25-2005, 02:39 AM
Hi Sonja,

Merry Christmas!
I just wanted to wish you luck with your surgery on Wednesday to remove Interstim. I will be thinking about you and keeping you in my prayers.
I'm still waiting for my doctor to resume the Bion study which has now been on hold for about 6 weeks. It sounds like it's only my research center with the Bion hold.

I'm hoping that the New Year will bring us much success with Bion.
For the 10 weeks that my Bion was working, I did have pain relief and my Pelvic Floor Dysfunction did improve. I'm just so tired of waiting for the study to resume and to get some relief again!

Again, best of luck on Wednesday and Happy Holidays.
Looking foward to a better year with Bion#2 (hopefully soon)!