INTERSTIM IMPLANT

I am getting the Interstim implant on January 8th and I would like to find out if anyone has it and how long was it before you could feel it was working? How long was recovery?
Frances

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Hello - Just got back from having stage 1 of the InterStim surgery done. Went much smoother than expected. Just a fair warning. After the wire/lead is placed, you will be awake enough to report various sensations, painful ones included, as they need to know for sure they were in the right place and that the temporary device works. Had a very short stay in recovery with some pain meds administered. Over all, I feel like I have a back ache with a tingling sensation going on. Compared to other surgeries, this one was a breeze. Anesthetics given were in a much low dose to where I didn't have my normal issues and stayed awake. I was rather impressed as there was a Manufacturer rep who assisted before, during and after the procedure. Was glad to hear that they used two hi-fi x-ray cameras (one on the top, one on the bottom) to guide them, which was much different than my idea of them just fishing around aimlessly until they hit the nerve. Thought I was going to be awake the whole process, but that wasn't the truth.

So far, so good, but remember, I just got back from the hospital and still have yet to see what day 1 is like after surgery.

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Day after surgery: I toss and turn at night. Last night the temporary device on the outside bumped itself by 1 1/2 notches. For the first time in a long time, I was able to go on my own this morning without self-cathing (have urinary retention

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Hello,
I've had stage 1 done in the doctor's office but after 1 week the doctor removed it. Now tommorrow I'm going to the hospital for the Interstim implant. They are going to have to put the leads back in so actually I'm getting stage 1 and 2. For this surgery they are giving me a general so I will not be awake. When stage 1 was done it was nothing all the doctor did was give me a local. What I didn't like wearing the stmulator during stage 1 was I couldn't shower, sleep well and I kept bumping into this things with it. Now with this surgery I won't be able to shower for 1 week.
I was told that the rep will be there before and after and during. I also have an ambassador with Medtronic and she has the Interstim and is very happy with it. She said it works great and she too had retention. I have OAB, IC and IBS. I have heard that it will work for all three.
Take care, Anne

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I will let you know how recovery goes. Would you please keep me posted how the Instim works and let me know when you get the Interstim implant. With the Intersim you won't be able to have MRI's. Did your doctor tell you that?
Take care, Anne

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Hello There!!! Didn't know if you were checking the sight as it is new to me! It's interesting how our docs have done it differently. With the stage 1 I went through, he put the leads in, already attached to a flexible wire that comes out to the outer device. That way if it works in the next two weeks, all they have to do is attach the implant to the already placed leads and remove the temporary hook up. The Medtronic rep and directions said that I can unplug the device and take a frontal shower only, which I'm going to pass on that. The concerns is about keeping the wound dressing dry, clean and in place as long as possible to avoid infection(s). My biggest things right now are the device knob moving up notches... Sometimes I don't realize it unless I'm in a lot of pain down below. Driving was a little tricky - probably shouldn't have done it!!! I also noticed tonight that being out in cold weather makes my entire lower back ache similar to someone who has rods, screws... in their bones. Was not a pleasant experience at all. I wasn't out for too overly long when my back got stiff, after I felt the leads go cold.

I also have IBS, so you have given me a slight chance of hope that the device will help me in that department.

Yep, I know MRI's are out of the question. I figure if I have a serious enough condition that merits a MRI, I'll have the device temporarily removed, but only if I have to.

My urologist has been doing the implant during his residency before it was FDA approved, so I do trust him. Before I agreed to do the trial one, I just questioned him right and left about all the side effects that I saw on the net. He addressed them beautifully. The main thing he focused on, other than MRI's, is that if I were to fly anywhere, I would have to have the device taken out before hand.

Best of wishes and keep me posted n how your surgery went... My stage 2 implant or lead removal, depending on if the temp device works, is scheduled for January 20th.

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Hello,
My surgery went well and I can already tell a difference. After 1 week I was able to take a shower. My incision is healing up well. All I have to say is that I wish that I'd had this done sooner.

How are you doing? I know that your surgery is coming up soon. Keep me posted as to how your surgery goes and how you are feeling.

Best of wishes,
Anne

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Hi Anne: I've been wondering how you were doing with your Interstim, and just read your post. Is the interstim
still going well? Anything unexpected? What's the best thing about it? Worst?

I'm getting my urethra dilated in the hospital under anesthesia on Feb. 11. This hasn't been tried with me yet, so my doctor want to do this next. I'm excited about it. I love my new urologist - someone who listens to me and cares, for a nice change!

Good luck with everything, Anne.

Carol

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Hi Carol, I'm doing pretty good with the Interstim. I was getting up 3-4 times a night now I'm only getting up once. That has helped that so far. Now I just have to be patient and wait for it to help with the OAB and IC. On Feb. 8th it will be 1 month since I got the Interstim put in. The Interstim does not take away all of the problems completely but it helps. The nurse is trained as to how to use her stimulator that has many, many controls. My stimulator I can increase the electrical impulses or decrease if needed. I have it turned up to where I can feel the impulses but yet not hurt. I never turn off my stimulator it is on all the time while in the shower when ever I go out in public, etc.
The worst of the whole thing was the soreness from the surgery where the doctor went into my back by the sacrum and made 2 small holes to put the leads in and then he put the leads under the skin and attached them to the implant.
I've had several urethral dilations done but that did not help me and mine was not done under anesthesia. It was painful to me because all the urologist did for me was give me a local. I wouldn't advise anyone to have it done by a local. Your new urologist maybe going to look in your bladder more than just a dilation to see if there might be something else that is causing your retention.

Good luck and best wishes, Carol
Anne

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Hello Anne - Sorry it has been so long. For anyone else who is reading this, my problem is urinary retention. I had stage 1 done. The day after surgery I was just tickled pink as that morning was the first time I was able to go on my own. It had been so long! That lasted throughout the day into part of the next day. The setting quit working the other part of day 2. The rep and I were touching base almost on a daily basis. he would have me switch the settings, didn't work... I did have him puzzled as it worked before, showing him that my body was responding to it. It took about a week's worth of trying different settings. As a last ditch effort, he tried the last setting there was. Wah lah! It started working again! Tickled pink! Well, same story, different days. Quit working... He kept telling me that the stage 1 device was "brutal" compared to the implant as the implant had a whole array of different settings that the device didn't offer. I added things up as far as the percentage when it did work and didn't. I did quit documenting things when it quit working. I improved by around 38%, which it needed to be at 50% in order to qualify to get the implant. I decided to have things pulled. I was very hopeful at first. The numbers just didn't add up and even though the rep wanted me to have the implant, I decided that I didn't want to be a guinea pig for trial and error. It was a quick 15 minute procedure on January 19th. The main incision is having issues right now. Plus, I was allergic to the adhesives used to keep the incisions air tight... So, on my part, I'm working on acceptance. Ever since I quit being able to go on my own, I did view it as being a temporary thing, that my body would heal on it's own... The stage 1 process was my attempt to feel normal again. Well... now you know the rest of the story. My urologist didn't use a local either time with putting in the lead and taking it out. He used a light enough sedation to where he had me wake me up in the OR (with stage 1) and they tested whether or not the lead was placed in the right area. Let me tell you, I hit the ceiling (so to speak) quite a few times. It didn't appear as if the device stimulation intensity was done gradually. I was barely able to report to the nurse who was by my head where I was feeling the stimulation at before I got zinged again. Can't remember how many times it was done and I was sure relieved when they stopped!!! I spent little time in post OP for both the placement of the lead and the removal of it. Eh, every once in awhile I can go on my own. I've had issues off and on with feeling my body is failing some. Keep in mind that I had my left ovary and fallopian tube taken out Aug 29 because they decided to literally twist themselves to death. Then a lump removal Sept 3rd, then back to OR to repair a hernia and to relieve a hematoma that I acquired the morning after my surgery on Sept 9th just to have a seroma (sp?) develop (my body was healing form the outside in vs "normal"). Since my body has a tendency to do that, I'm guessing that it is true of the incision area as I have had unpredictable zapping of pain. This morning it just aches. I have a post op follow up with my urologist today. Maybe he can see better what's going on back there. All I am able to see is 1/4 inch of stitching just hanging out. What fun.

I am truly happy and supportive for those who have had the device work for them.

Will check in every now and then to see how ya'll are doing : )

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ILuvMyCat1996,
Sorry, to hear that you had such a bad experience. I wonder why it worked at first and then stopped? It sounds like you were in alot of pain and that is not the way it was with me. I had stage 1 done in the office with a local it did hurt but it could have been worse. Then after 1 week everything was removed. So when I went into the hospital for the implant I had a general.
I'm having to go every 2 weeks for adjustments on the settings until I get relief from all the symptoms. The Interstim is not a cure all but it will help with some symptpms to where they are not so bad. My incisions are healing well but I'm still sore and sometimes I can actually feel the implant especially when I lay down. How is the incision looking now? Let me know how you're doing after your post-op?
Do you have IBS?

Take care,
Frances

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Hi Carol,
I hope everthing goes well for when you get the dilation and hopefully your urologist will be able to help you. Let me know how it goes after the dilation or whatever the urologist tells you.

I'm doing well but I'm having to go every week for right now to get the correct settings to help with the symptoms. The Interstim is not a cure all but it will help with the symptoms to where the OAB and the IC won't be real bad like it had been.

Good luck and best wishes,
Anne

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Hi everyone! I am so glad I found this discussion board! I just saw my Urologist on Wednesday and he brought up the InterStim procedure. I have been having bladder problems for a year now, I had a cystoscopy done under anesthesia Feb. 13th and my Urologist had to dilate my urethra, I am so glad he did it while I was under because recovery afterward for a couple days was painful, I can't imagine if he had done it while awake! Well...symptom's have not gotten better, so he put me on Amitryptiline because it is supposed to help with symptom's related to IC. I am not sure about trying this, but I have done what he recommended and I am trying it. I take it at bedtime and I sleep ALL Day the next day because I am so exhausted from it, it makes me moody and depressed. When I saw him he told me if the medication doesn't work we can look into InterStim therapy. He was very confident about this. I have been unsure and whatnot about it, so I am glad to have found this board, to get others input etc... it has been quite a comfort reading from others!

Renee

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I have had Interstim implant and had no idea what I was embarking on. Long process of surgeries and damages from Interstim. I am now on a support group of women who have been left like I have from this device. My heart just breaks everytime I hear someone is getting one or has one in. Some damages are not apparent until device is in for awhile, some right away and some pretty serious ones after. I agreed to device out of sheer desperation and did not realize the dangers (most of which I was unaware could even happen) prior to actually getting the Interstim. I will hope and pray that is not how it goes for you. I would be willing to share my specific experience with Interstim with you if you would like or any support I could offer, just let me know. God Bless You, Raelynn

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I have had Interstim devices and am willing to share experience (sorry, it is not good). You are not alone and if I can offer any support or experience sharing with you, I would be happy to. I pray your experience with Interstim is not nearly as tragic as mine has been. God Bless you and my prayers are with you.

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I have had Interstim device and would be willing to share my personal experience with you if you would like. My experience was long, painful and damaging, and my prayers go out to anyone who has it. Research can be done on FDA website also and I know I am not alone in dealing with the damages left from Interstim, most of which I did not even know were possible. It was a life-changing device, but definitely not for the better. I have been on support sites for other like me to get help in dealing with long term damages. May God Bless you in whatever you decide.

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Hello Raelyn,
I am so sorry that you've had such a bad experience with the Interstim implant. When did you get yours put in? How long was it before you begin to have the problems? I'm afraid the wires might come out so I'm trying to be very careful? Did you notice any help with the Interstim at all? MIne was put in January 8th.
Take care and God Bless You,
Anne

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Hi Annie! Thank you for replying to me. I am new here and was happy for response. The interstim for me wound up with 11 surgeries total from beginning to end (actually, no end because of so much damage that even after last device, I was left with array of permanent damage). I started with "test" device, like everyone does. Test is only leads so one really doesn't get a complete picture until entire device goes in. It worked great at first - I was overjoyed after being so desperate. There was slight shocking but nothing big at first. Seemed worth it. When entire device #1 went in after weeks it began to cause pain and shocking increased. Was told it was infected and the device would have to be removed and re-implanted on other side. Rep assured me this was very rare. After removal wound had to be packed closed (very painful,months long process). I went for re-implant on other side when I finally healed. Device #2 was in for about 4 mos. during this time shocking got more intense and "reprogrammings" done often to try to stop them. Feelings of being electrocuted from the inside out increased in intensity to the point I was driven to the floor when device was on. I was finally told that leads had "migrated" (moved) and device would have to be removed and re-implanted. It took 9 days inpatient in hosp. and 2 wounds requiring packing to close (took 3 mos. 3x's a day by nurses). Was assured again that this was very rare. Bedridden again. It may seem hard to believe that I agreed to another device, but it did solve issue of not cathing and I was desperate. Was assured by Dr. and Rep. how rare lead migration was with Interstim's. Device #3 was implanted. No infection and just slight shocking. Not bad at first. This device was in for almost 3 yrs. during which I had countless "reprogrammings" for shocking, began to get numbing in foot and left leg, tingling, toes curling and leg reflexing on it's own, loads of neuro issues. Rep. would reprogram and send me off. Then device began sticking out from under skin. Was losing feeling in left leg and foot more freq. and began to fear driving. Device #3 had broken and was removed. To my horror, I awoke from surgery with no feeling at all in entire left leg. Was told the nerves had to heal. Bedridden again - this time 7 mos. wounds were packed and had therapy at home to work on leg. Slowly feeling returned accompanied with severe nerve pain. It took a year to walk unassisted. Wounds from this device "tunneled" resulting in more surgery to re-open and pack closed again. Immediately after removal I began with cardiac arrythmia and had to be put on medicine for that. Apparently, having constant stimulation in the body can cause heart to "rely" on it. Hence, it works like a "pacemaker" to the bladder. Was I surprised to realize at Cardio's office that it is the exact same device only put in a different part of the body? Not by this point! Suffered two strokes last year because meds. weren't controlling arrythmia enough. I will require life long medication for this problem and possibly a pacemaker...guess who makes that device???
I am not alone. FDA website (MAUDE) has loads of cases like mine. Support site: I_shine (Yahoo Groups) supports women like me "after Interstim". Let me know if you want an invite. I pray you won't go through near what I did - and others like me. Sorry this is long and sorry if I am scaring you or anyone, but the truth is what I wish I had gotten. I am blessed by God to be alive....and yes, I am still catheter reliant.

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Hi Raelyn

I have been thinking about getting the intersim and am very grateful for your reply, and I would love to join the Yahoo group you mentioned. Could you send me an invite please.
Thanks and hope things improve for you
Maggie

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

Wally

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HI all,
Me and my friend above started that site for IC,Bladder problems and interstim damage. I asked her to help me as for 8 years I have helped people with interstim damage. I had interstim when hardly anyone was talking of the damage that can happen. In the 90's there were already people reporting awful consequences. I was not on the computer at that time. I am eight years out of several interstim surgeries, too many reprogrammings to even count,two different surgeons to revise and implant it again. I was like many abandoned by the surgeons when things went bad. I didn't walk anymore and we went on a nationwide search to try and find someone to remove it. I had my first implant in CO and two surgeries on it there. I had the second one in Iowa City. Yet my problems continued. I got to the point where I was being shocked in so many areas. I posted to Wally more detail and you can read there too. I couldn't walk anymore before it was out. I can walk now but not far at all. I am not longer active because my whole lower body is damaged. I have permanent nerve damage in the spine and sacral nerves, internal paralysis. I am so not alone with these kinds of damage and there are those worse off than me. I have helped people endure interstim when things go bad for years now. I helped Raelynn when she contacted me for support and to endure getting through what she was dealing with until it came out finally. I was one of the ufortunate ones in our nation that the surgeons choose to just abandon with it in. I found out later I was not alone on that. I walk wtih a cane now,walker, and have a wheelchair prescript. I tell people before you even consider interstim please research it to the best you can. It is extremely hard to find adverse reactions on interstim. It is not in any brochures you get from the manufacturer. It is not told to most all patients by the doctors putting them in. Like I told Raelynn you can find some information in the FDA reports especially in the Maude reports. Leads have moved causing real serious problems. And yes if you have any issue at all, or any thing that is sticking out of your implant site that is a medical emergency. You call and get help right away that is not ok. If you get shocking anywhere that it should not be shocking you call and get help. I was reprogrammed constantly as was told that was all I needed. Then I was told I needed revision surgery. I had that. It has done permanent damage to my spine and sacral nerves. it has effected my heart like Raelynn but not been to a doctor to look further into it. Lead movement or migration is not alright. Infections in the implant sites are not ok. Infections in the pocket are not ok. I urge any of you to please before getting interstim do your best to find information. We are not the only two with serious damage. We are two of a number too high to count anymore. It is extremely difficult to get a doctor to admit to these issues as they don't tell patients. To hear heartbreaking stories and people in such need is so difficult. To help them get through till they can get it out is a pleasure. There are so many alternatives to interstim so please look into all things. Please remember it is your body and you have the right to say no. Please remember this is a implanted device and it sends electrical impulses. I see a neurologist for my damage once a month and forever will have to. The damage effects the whole lower body and is traveling up my spine. There are some worse than me and some not so bad. Any shocking down your legs is not ok. My unit malfunctioned and would not turn off. I tell people that are going to get it to make sure you get it in writing from your surgeon that for any reason what so ever you want it out they have to take it out. I tell people when your getting shocked in places you should't turn it down low or off till you get to the doctor. I tell people if you end up with damage please report it to the FDA as they are keeping track of this. Please be careful.
We would love to have any of you that would like to join the support group. It is for bladder,and neurostimulators.
Sharrylynn

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