lead migration?

Hi I am new to this site after researching problems with medtronic interstim devices. I have had it removed but am in severe pain/medtronic rep says its the surgeons fault. One device was faulty so op aborted. i am getting nowhere with surgeon or medtronic

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Hi, and welcome to the sight. Sorry to hear of your pain and the surgeon being blamed. Is the surgeon a urologist? I love my urologist and he is very open and truthful to me. I honestly don't know which direction to send you. I had the interstim in Nov. 2011 and have had no problems with it. If you don't have a urologist, try to find one in your area. Maybe the uro can be of help. I don't wanna reccommend another interstim since you had problems with the first one, but maybe you could talk with your doc about it? Keep me posted....

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I had the interstim planted in me on nov 9, 2011. At first I had many problems, usually around the programming part, I had no idea you had to program the device, I was under the assumption that once inplanted it would owrk regardless, but to my amazement I had to research several programs and change them to find the right one for me and finally I found number blessed three and keep it there, Now I go like normal people do every four to five hours and maybe get up no more then three times a night,not like 6 or 7 times a night. so far so good, its like anything else you have to adjust it, I was not crazy about the idea of getting a new battery put in every 2 or 3 yrs, depending on how much you used the programmer, but oh well, if it worked miracles on my bladder then I suppose I could deal with the battery every 3 yrs or so. I would suggest you do find the person whos to blaime or takes responsiblity for the pain, someone did something. God Bless and good luck

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The surgeon who caused me damage is a colo rectal surgeon as the interstim devices can be used for bowel incontinence too. The damage is definately where the device was as I have a great pain specialist who did an epidurogram that demonstrated the problem. Thank you for your support.

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I aagree with catlady... find who is responsible. Possiblity that the wires are either on the wrong neres, or intertwined somewhere. good luck

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Thank you all for your support it means a lot to me. I have a lawyer now and have done a formal complaint but have two issues, one I was told was a faulty lead the other that the device moved or was on the wrong nerve. Will let you know more later

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What device moed? l have the lead wires and battery implanted.

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Hi it was the lead wires, not long after it had been implanted. I knew something was wrong, the pain was unbearable if the device was turned on

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Did you move in an awkward way or lift something? I have heard of leads moving and was wondering what may cause it. Could mine still move if I had the surgery in Nov.?

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I doubt that your leads could still move this long after surgery.

The reason they suggest total bedrest or very limited movement days to weeks after the surgery is to scar tissue will form around the leads securing them in place (same with the battery unit). Some people take longer for the area to "seal" so it is definitely a person to person process. Sometimes a person can do everything correctly and the lead will just move so if that happens, the person shouldn't be made to believe they did something wrong (unless they were out bicycling, skiing or other stenous movement sport immediately after surgery) and the Dr. should re-schedule the person for a new lead placement if they cannot re-position the original lead. That is possibly what happened to me with my first surgery. We could not get any relief from any settings on my permanent device so my Dr. went back in and tried to "re-position" the leads but wasn't able to do so so she put a new one in on my other side. Anyone who has had lead migration should get their Dr. to fix it and it just happens sometime thru no fault of the patient or the Dr.

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Hi I understand what you are saying but I felt the lead move 10 days after surgery, my problem happened as I was not given instructions not to bend or lift etc. Then after I told the consultant he left it in a further 6 months. That is why I know he is to blame, this was the 2nd attempt at insertion the first device apparantly was faulty.

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Is your pain from the battery or a nerve, that is horrible as I am having mine removed after 3 months because of severe pain in both the battery area and down my leg. I have it off and it still bothers me in the battery area.

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I am sorry to hear you are thinking about having the device removed after only 3 months. I had my device implanted in September and I too had pain in the area where both the battery and leads were placed but at "some point" the pain went away.

If you are getting good results from your Device, I would ask that you wait awhile longer and try and dial down the setting to see if that takes care of your leg pain. As to the pain where the battery is, have you had your physician check the area for fluid? With my implant I had a fluid pocket around the battery that caused me severe pain and fever like symptoms that was only discovered when they had to go back in and remove the device to re-connect it to new leads. After the fluid was drained I only had mild "incisional" pain that went away after several weeks. Pain usually means something is wrong and may or may not be related to the actual device. Also, if your device is implanted very shallow under your skin like mine is, that may be part of your pain. Either ask your MD if they can "bury" it deaper under more skin or muscle or do what I did. I purchased several of the small "pillow Pets" and when know I will be sitting in a chair that does not have any padding where my incision will rub, I use the pillow pet to cushion the area. I am also careful that I don't sit down too hard or otherwise bump the area since it is implanted so shallow under my skin. Another thing I did was that I kept Ice packs on both areas for about two weeks following the second surgery and did not have any of the issues I had during my first surgery. I still use the ice packs when I accidentally bump the area or if I get sore because I had to sit in a very hard chair but forgot to bring my pillow and that seems to make the pain go away. You may want to get several of those "gel" ice packs that can be placed in the freezer and try rotating them on the battery site and see if that helps. The packs I am referring to are the type used for back strains and have a fabric pocket for the gel packs and have elastic straps that go around your waist/hip area to secure the pad. With those percautions, I have found that I have to actually look at my "backside" in a mirror to even know where my two incisions are.

I hate to have anyone think about having their device removed for pain issues that may be a result of issues not actually tied to the implant. I just caution anyone considering removing a device that may give them a chance at a normal life to think about it and try and investigate other possibilites for the pain before making the decision to have it removed. For those of you that may have pain because of damage to a nerve or other issues from their surgery, my heart goes out to you since obviously none of my suggestions would work for those cases. I know if that had happened to me I would be "twice shy" to even think about trying to have another device implanted even if I thought it would improve my quality of life.

Again, for my own experience I know my recovery and programing phase has gone thru several ups and downs including undergoing surgery to revise my sling and graft. However, even though my device has not provided me with 100% relief for my Overactive Bladder, the combination of my Sling, revision surgery and the device has made my life much, much, much better. Sometimes I think the MDs who do these surgeries give their patients too much false hope and unrealistic expectations about what type of relief they can expect and how long it may take them before they "completely" recover from their surgery and then are able to find the correct lead setting that will help them the most. I know I was starting to get frustrated that I would never find that "perfect" setting on my unit and then I had my revision surgery and whatever my Surgeon did seemed to help. The setting I am now on seems to be helping me even thought the same setting did not work prior to my surgery. Because my overactive bladder is so severe, I may be one of those patients that requires a combination of bladder surgery, Interstim and Botox (which may be the next thing to try) but I know that the InterStim has helped me quite a bit.

Good luck to you.

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I have the same issue, when I turn on the stim, after 2 to 3 days the pain starts up again, I turn it off and it takes a long time (several days) for the pain to go away. What did you do to resolve this?

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Hi as my pain is due to the nerve having been damaged I had the device removed and personally would not want another one inside me. I do wish you well with your pain but would advise you to take the matter up with your surgeon. Best wishes

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I feel the same way as with the pain I know it is a nerve, it makes me nervous to think of what is going on in there. Thanks for the info.

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I am new to this discussion sooo here goes. I have had close to 3 years of problems. First I had shoulder surgery , all went well until fell and broke my wrist , I was having problems with over active bladder and saw gyn. she decided it was my kidneys and did a scan which showed that I have horseshoe kidneys( this I knew and have had no problem with). They also found a good sized kidney stone that had to come out right away. Surgery went well no problems. Over active bladder got worse and when I mentioned this to the dr.she felt the surgery had nothing to do with the OAB. Next door was a uro-gyn he happened to be the most careing person besides my husband, after a long talk and exam he determined I needed bladder uplift. Surgery was more than expected bladder was full of infection. I have had more uti and meds for yeast and bacterial infections -pillls pills and more pills. Would get one infection cleared and within a week another would need meds. I had antibiotics injection for 10 days ( my husband had to do the injectin. 3 different times I have had botox 3 times and instilation 2 times. Every treatment seemed to help either with the pain or the OAB. Monday my doctor said he thinks we are chasing in a circle and ask me to look up on internet interstem. I have used a tens unit for my back and neck for 20 years and have had some benefit with it. After finding this discussion I am so depressed I am almost afraid to even think of having this procedure done. I think the world of my dr. and have always thought he was there for my benefit. So much to think about. Thanks to everyone with enough patients to read all this rambling. I will continue to read and appreciate everyone of you that tell what you know to be the truth.

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You will find many posts on this site that will honestly tell you the good and bad experiences with InterStim. For the unfortunate ones that have had bad experiences, reading their stories will scare the heck out of you. Then you read the stories of those of us that know InterStim has improved our quality of life and it gives you hope that maybe you won't be one of the unfortunate ones that have a nightmare experience.

The key is to find the best Doctor and it sounds like you found one that probably has the expertise to skillfully insert your device and provide the necessary follow-up to make your experience successful. Other than my initial contact with my Medtronic Rep after my surgery for the Trial Phase, I have not had any contact with him. All my follow-up and Programming is done by either my Doctor or her Nurse and both are available by phone or e-mail when I need them. They both have the "never give up" attitude that is necessary to provide the best results from InterStim since it is very, very, very very rare to hear of anyone that went thru the Trial Phase and Permenant Placement without complications or program "tweeking". The programming phase can be frustrating at times because you, your doctor/nurse or Medtronic Rep are basically doing trial and error at each visit to find which program, setting and what intensity works best for you. Also, what may have worked for you immediately after surgery might not work once your body and the areas where your leads and device were placed have recovered.

So, please read other discussions on this site and then go back to your doctor with a list of questions you may have after reading the pros and cons you read on this site and listen to what he says. Something I beleive all of us tend to forget is that any surgery or having anything implanted in our body will always have risks, consequnces and probably various side effects. Each person has to decide if their life has been so disrupted by the effects of whatever disease or condition they have would merit taking a chance that new medical technology may offer hope even with the risk of the unknown. For me, that decision was yes and it also meant that I have needed a COMBINATION of surgery, InterStim, more surgery and now possible Botox to treat my Overactive Bladder. I have had some horrifying experiences with many of my surgeries, various medications and even the initial Implantation of my InterStim but I would do it all again if I knew I had a chance to correct my condition.

Good luck to you and I hope I have given you a balanced view of what to consider and will be happy (as is everyone on this site) to answer any specific questions either thru a discussion post or private message. If you are interested in private messages, you need to be "friends" with whoever you want to message and I just sent you a friend request.

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So sorry to hear you are in pain and hope you get it resolved soon, please let me know how you are and how you get on. with very best wishes.

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I had a Medtronic Neurostimulator inserted by a Urologist 12/28/2009. 12/31 I had "pins & Needles" down my left leg and into my foot, and presented at our Clinic. They didn't know what it was, saw a Neurologist in 2010. I had a myelogram, electromyogram, cat scan, cat scan of brain, etc. etc. No answers. I had physical therapy - no relief. The device did work for my bladder. I returned to the Urologist in Feb. 2010 and he told me his notes revealed that during surgery on 12/28/2009, he loosened the left lead (which caused me troubles during the trial period) and since I was to have the right lead permanently inserted, he pulled it out. I continued to have tingling and pain in my left leg and foot, sometimes in my right. I talked to Med-Tronic a lot - they mentioned migration of the lead. I asked to have the device removed - even though they told me it wouldn't remove the tingling. I asked to have an x-ray of the lead to see if it had migrated. It was x-rayed in surgery and after surgery the dr. told me it was "right where it was supposed to be." Perhaps if he had x-rayed it before surgery I would not have had it removed. After it was removed I had a MRI which revealed nothing. I have had the "pins & needles" ever since. I finally went to a Chiropractor/neurologist - which was not covered by my insurance. It was greatly improved. Soon after I was diagnosed with Achilles bursitis- tendinitis in both heels.- and went to a Podiatrist (covered by my insurance). I could no longer afford the Chiropractor. My heels were improving with exercise, lifts in my shoes, etc., but still not cured. I will have to call back in April I guess. The "pins and needles and pains down my left leg returned, and I am back at the Chiropractor - I don't care what it costs! Sometimes if I walk (shopping) or stand too long, the strength in my left leg gives out and I have to lie down. The tingling and pain is especially bad in the morning when I get up - today it is awful. I have the tingling like when the device was in just before bowel movements in the a.m. I am wondering if when the Urologist removed the left lead if part of it broke off in there- is that possible? Yet, nothing showed up in the post surgical tests. This is really getting hard to live with. I have seen several (3) neurologists. The last one said I had "anxiety." NO KIDDING! Should I demand another MRI or something and tell the Dr. what to look for? Has anyone else had this experience? There has to be an ans. somewhere, I think. Thanks for listening!

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Hi I am so sorry to hear of your awful experiences, I hope you find out the answers soon. Please take heart from the support of another fellow sufferer.The lead and device that I had removed was the 2nd attempt as the first one failed mid operation which had to be abandoned due to 'faulty lead' according to surgeon but medtronic rep said it could be a 'user' problem. I am awaiting a report to tell me the findings when it was sent off to be analized. I had an epidurogram which showed the damage under x ray control dye was injected and the sacral nerve roots were blocked with the dye not able to pass down the roots. This was done in a pain clinic. Keep strong and believe in yourself.

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