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I am having my interstim removed and have questions

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    Hypnogal
    ICN Member

  • Hypnogal
    replied
    Re: I am having my interstim removed and have questions

    My interstim for neurogenic bladder was placed in 2006. Replaced in 2010 for a new unit due to broken lead.
    It helped my neurogenic bladder (happened after hysterectomy) but noticed over time I needed less and less simulation from it for good results. I also noticed over time (a period of 8 years) that the pain in my lower left back/butt area
    kept increasing in a very particular spot /// my (bad) nurse practitioner at my urologists office insisted my back pain was not due to the interstim. After she was "let go", the new nurse practitioner insisted that the area of my pain is directly in the place where at insertion site (of the interstim!). This after YEARS of steroid shots and pain medications for what I was told was sacroilitius! I had a urodynamic study done 8 years after the original implantation. My bladder tested normal - NOT neurogenic. Could that HAPPEN? Yes. It's rare, and not the norm but in certain cases nerves can regenerate and the bladder can regain lost function. I was one of the lucky ones. I had the interstim and all it's component completely removed 2 weeks ago. My bladder has returned to it's NORMAL functioning and my BACK PAIN of 5 years is GONE. Now, it's 2014 - I just had to tell my story. You won't read many like it and I in no way mean to give anyone false hope. I had IC symptoms/but not hunners ulcers when the interstim was placed and had to stick to the IC diet protocol to avoid an increase in IC-like symptoms / due to nerve damage from years of uti's. However was told I did not have IC. Very confusing. --- Well that's my story and it's nice to slap my butt now without feeling like a cyborg and I consider myself to be a "saved soul" now on my second life / with the message of never give up. The body is always healing. It's what the body does... so don't be afraid to ask "what if" once in a while... the answer might be better than you think.
    Of course, never never turn off your interstim without your doctors approval. However when I finally did get the "go" to turn mine off - I got my life back and if you go back some years and read my old posts.... you'll see that I didn't have much of a life at all back then (all about my pain/food/fear and isolation). Life can get better. The body can heal and I believe mine did because I believed just that (and I was very lucky!)

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  • Madi's Granny
    ICN Member

  • Madi's Granny
    replied
    Maybe they could move the leads away from your sciatica nerve and that would help. My uro still tells me that MRIs can hurt the interstim even though I have had mine 5 years. I think only time will tell if the damage is permanent or not to the nerve. Maybe since it only been 2 months it won't be permanent. Hope the new doctors can help.

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  • ademasters
    ICN Member

  • ademasters
    replied
    Oh man Purrball--- 1 week?
    Well maybe healing when they remove is easier then when they out it in ????
    But I would be SO over joyed if when I go to see the big "fancy smacy" In June that he can just fix whatever the DoDo doc did y'know?
    I still "WANT" to have that hope in it, because I've barely had it 2 months, the magnet issue is making the leads hit my sciatica (oh joy as if I didn't have enough "fun" already lol)
    I just don't know if the damages are temporary or permanent???

    Anyone know??

    Lost, young and Lost when it comes to this stuff, lol, but I'm positive about it all, about 90% of the time anyway ;-)

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    Oh wow ademasters. I can't believe your doctor told you an MRI or strong magnet would not affect the unit. I'm sorry you're going through all of that pain and that must be scary to not have as much feeling in your leg. I do have a quick question for you though. Are you using the TENS unit in conjuction with the interstim because I didn't think you were supposed to have any other type of stimulation with the device? I find it quite upsetting when doctors diminish the experiences we have. As though we don't already have enough to deal with as it is. I hope your new doctor helps you out. I feel so much better with my tailbone and leg now that the device is out. I asked my doctor if the lead had moved but she said it was highly unlikely since it has the tines in there, but I think it did. Keep us posted on your situation.

    Leave a comment:

  • ademasters
    ICN Member

  • ademasters
    replied
    I'm not alone!

    I am not alone in this InterStim issue thing!!!!!! Oh my goodness!!!! I'm SOOO sorry you guys have to go through ALL of this pain.

    I had my Interstim put in march of this year. Since then I can't sit without Extreeme pain.
    Often at nights I have thought how much more would it REALLY hurt if I just reached in and ripped that sucker out? I mean c'mon now! Lol.
    2 days ago I came in contact with a high magnitude magnet without knowing it until it was too late. My back was literally backed inches away from it, at my local library. My 5 year old daughter was checking out books for the very first time.

    I have had a nightmare experience, one that would sound almost fake if I went into every detail. it's crazy, from trial til today....

    My doctor refused to follow the instructions of the MedTronics rep today and did his own thing instead, so I have no clue if my leads moved, but what I do know, is since the magnet contact I can't feel most of my left leg, my back is killing me, my modulator site is extremely sensative to the touch, and I have to walk with a walker or cane depending on the amount of strength and feeling in my left leg.
    My doctor (who was fired today) told me that no magnets not even MRI's can do this to you, no matter what part of you is in the MRI. (which kind of contradicts MedTronics right?? )

    Ohhh my goodness, it's soo confusing. I had an appointment set up for a second opinion, but now they have become my main doctor whether they choose it or not. But one person can only take SO much abuse from a doctors office

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    Well, my procedure was a week ago and I'm doing pretty well. Most of the pain I was having prior to surgery has gone away. Now, I'm just dealing with the pain from my arthritis, but that should get better once I can go back on my Humira next week. I also have a little irritation at the incision sites since I have bandages on and the adhesive is causing me to break out.

    Kkrablean- How are you doing these days? I hope all is well.

    Watata- How is your recovery process doing at this time? Has your UTI cleared up at this point? Hope you're feeling better!!!

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    Well, my device is out now. I'm only having pain where the battery was, but the side where my wire was is actually feeling better than it has been, so it seems it may help in the long-run. They were able to get the entire unit and wire out, so now I don't have to worry about making sure doctors don't do MRI or ultrasound anymore. The pain is pretty bad at the moment, but I'm sure it will get better. Thankfully my doctor has me on stronger pain meds to help with the pain. She has got to be one of the nicestr doctors I have worked with. I will keep you all posted on my recovery process from the surgery, an maybe someone who may have to have this done will be able to use this information to lower any anxiety they may be feeling, although I really hope no one else ends up in this kind of pain.

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    Well, in about 11 hours I will be having my device removed. Feeling pretty anxious now and really hope that I feel better in the long run. I'm sure it will be a pain in the butt at first. Just a little humor to lessen the anxiety. I will let you all know how it goes.

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    I am having even more pain today. My left leg gave out on me so I fell on my right side where the wire is and feel like it moved into even a worse position. It makes me nervous that falling has made the pain worse and to wonder how bad it will really be when I have them go in and take it out. 6 more days and praying all is worth it. I'm so sorry your doctor is so invalidating and messed things up for you in regards to getting disability. I have been fortunate lately that my doctors listen to me pretty well. These days if I have a doctor who does not listen or have compassion or believe me I leave and go elsewhere. I don't have time to argue with doctors or the ability to mentally handle it. I have had so many issues I've been dealing with that I need people in my corner.

    Leave a comment:

  • kkrablean
    ICN Member

  • kkrablean
    replied
    It is understandable for you to be nervous! It is always that not knowing that makes things so much worse. I feel for you. I really hope that it clears things up for you or at least makes things more tolerable. Keep me informed!

    I have talked to his nurse. She is nice...but he pretty much keeps telling me basically to "suck it up". So I will probably start looking elsewhere. I lost my job (because I missed so much work) so we just had to switch to my husband's insurance so I need to see who/what they cover. The company that let me go was nice enough to help me through until I finished the waiting period to get long term disability and this doctor ruined that for me too. Ugh. I am feeling super frustrated and still in a lot of pain.

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    As my surgery gets closer and closer I am getting more and more nervous. I'm worried as to whether my pain in my back, butt, legs will get better or not or possibly worse. I hope it is worth it. I am in pain elsewhere right now because I am not able to take my Humira which helps with my pain and swelling caused from my psoriatic arthritis which causes pain and joint swelling.

    Kkrablean- Have you been able to talk with your doctor more about the issues and let them know of others who are dealing with the same thing? I feel angry that your doctor is not listening to you. I have had that happen way too often in my life and it has caused me to feel hopeless at times. I've since learned that if I don't get what I need from a doctor I just go and find someone else, but I know that not everyone has that same ability.

    Leave a comment:

  • kkrablean
    ICN Member

  • kkrablean
    replied
    Thanks for the advice. I honestly don't know what to do or who to go to anymore. The doc who did my surgery has become a real jerk. And my normal urologist doesn't do anything with Interstim. But yes...my pain started since I had the Interstim placed and nothing else in my life has changed...so I am pretty sure that is it. So I have to say, as bad as I feel that you both have dealt with it, I was glad to read that it happened to others so I can use that for support.

    I hope all goes well for you!!!!!

    Leave a comment:

  • purrball
    ICN Member

  • purrball
    replied
    Thank you both for the replies. I was out of work for 2 weeks when it was implanted, but I still had a lot of pain when I went back. They're saying I won't need as much time since my body won't have to get used to a new "object" being placed in it. At first my doctor was thinking if I just turned it off for a couple of weeks we could reprogram it, but I told her I just want it out. It's not helping as much as I was hoping and has stopped me from having a couple of medical tests over the last year. After reading other people's stories I'm glad I have a urologist who listens to me and is willing to remove the device. She wasn't even the one who implanted it, since the one that did it left the clinic a week after my surgery. That was hard for me since I had been seeing him for over 6 years. I'm sure he would be willing to do it if he were still my doctor.

    Kkrablean- I would push further with your doctor in regards to the issue. Let them know you've heard of other people with the same issue and if you didn't have the back pain prior to the implant they should be looking at that. Best of luck to you.

    Watata- I'm glad your recovery from having it removed is going okay for the most part. I hope you feel better with the UTI soon. I know they can hurt much worse for us with the IC.

    Leave a comment:

  • watata
    ICN Member

  • watata
    replied
    I had mine out 2 weeks ago today for the same reason. I also have many concurring issues. My doc gave me two weeks then I follow up tomorrow to get the all clear to go back to work Wednesday. I'd say at a week I felt ok, although one of my stitches was causing a little infection, but they removed it at a week and then I started feeling ok. Now at two weeks I'm feeling worse, but have a UTI (confirmed today by local doc) and will see surgeons pa tomorrow for final post op visit. I'm hoping to go back wednesday. Take what you need and don't push it.

    Watata

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  • kkrablean
    ICN Member

  • kkrablean
    replied
    Back pain

    Oh my gosh. I have been having the same problem with back pain and my doctor said it could not possibly be from the Interstim and I need to work through it. I am sorry that you are having the same issues. As for removal and recovery...how long did it take you to recover after getting the Interstim put in? I would think the recovery would be very much the same since they are going to be interfering with the same areas of the body?

    Leave a comment:

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