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Lead must be replanted as part of battery change????

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  • Lead must be replanted as part of battery change????

    Hi gals, my 2005 Interstim II battery finally died. I’m being referred to a new doc as the original doc isn’t doing SNS implants anymore. The new doc is saying he needs to pull my leads and put a new lead in because the old leads won’t hook up to the IPG they use now. This has blown my mind because my leads are bilateral and fine and I had conscious sedation for implant so they are really well placed (and it hurt to get them in at the time). I had always understood that it would just be the battery unit. Anyone know anything or anywhere I can go for information?

    Thank you!!!!!
    C
    Catherine
    DX 2003 Interstim II implant 2005

  • #2
    Re: Lead must be replanted as part of battery change????

    Originally posted by Catherine9 View Post
    Hi gals, my 2005 Interstim II battery finally died. I’m being referred to a new doc as the original doc isn’t doing SNS implants anymore. The new doc is saying he needs to pull my leads and put a new lead in because the old leads won’t hook up to the IPG they use now. This has blown my mind because my leads are bilateral and fine and I had conscious sedation for implant so they are really well placed (and it hurt to get them in at the time). I had always understood that it would just be the battery unit. Anyone know anything or anywhere I can go for information?

    Thank you!!!!!
    C
    I would call the company and ask.


    Donna
    Stay safe


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    • #3
      Re: Lead must be replanted as part of battery change????

      Thanks Donna- great idea! Im calling them in the morning.
      Catherine
      DX 2003 Interstim II implant 2005

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      • #4
        Re: Lead must be replanted as part of battery change????

        I'm going to get an interstim trial on May 2, 2018. So the interstim has helped you alot? I have a lot of variety of types of pain. They say I'm not emptying well and it might help that. Hopefully if it helps that it might relieve some of my other pain. I also have alot of a constant feeling in my bladder. Kind of like a feeling like I could go pee but not like that at the same time. I would say a feeling in my bladder that is not normal of course.

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        • #5
          Re: Lead must be replanted as part of battery change????

          Yes, it’s really helped me- I’ve had it 13 years and I’ve went from being in a lot of pain, frequency, urgency and retention to low level discomfort that was like a light menstrual cramp and not even all the time. I have to follow the diet closely or I’ll flare and that overwhelms the SNS and I need breakthrus - but that’s in my control! You may still have pain associated with pelvic floor dysfunction so once the implant has healed if you still have pain the I’s definitely go see a pelvic floor therapist. All in all it’s been great for me! And my battery lasted 13 years!
          Good luck!!
          C
          Catherine
          DX 2003 Interstim II implant 2005

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          • #6
            Re: Lead must be replanted as part of battery change????

            Well thanks for writing back and it is great to hear some positive news about that. I"m having a great day today. The kind of day that makes me think remission is possible. Days like today have been very, very, rare in the past 7-8 months but I"m getting more days like this in the past month. Did you do the trial inter stim first? Is the surgery a headache? What about having the device inside you? Does that cause pain or problems?

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            • #7
              Re: Lead must be replanted as part of battery change????

              That’s super that your getting a good day! I have found over time that I had more good days as I started to get a better understanding of what irritated or flared my bladder and was able to avoid those things. I have to admit I don’t always avoid them because sometimes it’s worth it to have the fun and treat the pain!

              I did do the trial and had good enough results to warrant the implant. The surgery wasn’t all that bad. I’m not all that patient of a person so for me it was more the post surgery care of trying not to bend or move side to side or lift anything heavy so that the leads could heal properly that bugged me- but it’s really worth it to make sure your leads heal in place and it takes time for the scar tissue to develop that will hold the leads in place along with the anchors. I’ve had my leads in for 13 years and they are still perfect so that first few weeks of protecting them was worth it. The device doesn’t bother me at all, I forget it’s there for weeks. The one thing that made a difference was that I found I couldn’t sleep on it and I’m a side/tummy sleeper so I’d wake up and it would be sore because I’d changed position and laid on it in my sleep, the soreness would go away as soon as I moved off of it but it would wake me up. There is a solution that worked for me though - we bought a memory foam bed and now I can sleep right on it and it doesn’t bother me at all. Seems like the memory foam mattress forms around your body so it allows for the device. I notice the difference if I sleep on a regular mattress on vacation or whatever so I really appreciate my memory foam mattress. Other than that I have never had any problems at all- and I love showing off my X-ray that shows the leads and the implant- really impresses people- they call me bionic!! I used to turn it off and get a pat down at the airport security but that full body machine doesn’t bother my device so now I just go through that and tell them I have an implanted medical device.
              If you have any questions let me know- happy to answer them!
              C
              Catherine
              DX 2003 Interstim II implant 2005

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              • #8
                Re: Lead must be replanted as part of battery change????

                wow, that is pretty interesting. Thanks for that thorough response. I already have a memory phone bed so I guess I"m lucky. I've been in pretty much constant pain to some degree for a long time. Watching the diet for months and months didn't really even seem to help me. I"ve been very slowly having better days and periods of time lately. I"ve been on elmiron almost 6 months now and I've been watching the diet and doing stretching and physical therapy and sitz baths and more. I"m almost thinking of postponing getting the device with the way I"m feeling today but I don't want to jump to conclusions that I will be feeling good all the time. I"m pretty active and like to exercise so I will need to be extra careful to not to get the wires out of place.

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                • #9
                  Re: Lead must be replanted as part of battery change????

                  So I I got my trial interstim 2 days ago. The area is very sore on my back. I have it on a pretty low setting. I feel like i'm voiding better when I go urinate. I had pretty significant retention. I would always count seconds in my head when I would go pee. I'm peeing nearly twice as long. The interstim is fda approved for frequency, urgency, and retention. I've been having some very good days before getting the interstim in regards to pain. So is the interstim helping with the pain? I think it might be. This past week I"m definitely noticing my bladder very little, and less than before. So that is great. I"m really getting spoiled. I"m getting used to not being in pain. So when I get a twinge, it's like uh-oh, I hope it doesn't escalate to more than just twinges. Those twinges are nice reminders to follow the diet. So I"m improving. When on the interstim trial with the device on my back I have to restrict activities like running, stretching, exercising, etc. When I get the permanent one implanted after it heals there is no restrictions and they say I should have no pain over the sight. So I will probably get the permanent one. I"m looking forward to having no physical activity restrictions so I can work out again and do my daily stretching which I thinks help my condition. The first day or two, my right testicle was kinda of sore when I would sit down, but that has gone away. The leads are on the right side. So when I temporarily turn it up more I feel it tapping in the right side of my testicle. I then turn it down to the lower setting I'm used too where I don't notice it. I guess you can turn it up higher, and eventually I wouldn't notice that either. I'm trying not to overdue it now though if possible.

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                  • #10
                    Re: Lead must be replanted as part of battery change????

                    Awesome! Sounds like your trial is very positive! I remember having to be careful with the trial but once implanted and healed that all went away👍
                    BTW- they solved my big dilemma about what to do with the replacement battery. The new unit is built for one lead and I have an Interstim twin that is being replaced so I need both leads to be hooked up. The solution is that i will have 2 battery/modulator units implanted. Each one will run a lead and I’ll have 2 remotes. For me I have such amazing pain control from the dual leads that I didn’t want to give it up so now I don’t have to. Not sure if they’ll be implanted side by side or one on either side but I’m not too worried about it.

                    PS- I have a similar vibration thing when I turn it up, I feel it in my pelvic floor. I take it up slow and it takes about half an hour for that sensation to go away (I’m told the brain turns it off) and then I’ll increase it again.

                    Glad your trial is doing well- I’m just starting to get back in shape and so I’m really envious that you are so fit and active!!
                    C
                    Catherine
                    DX 2003 Interstim II implant 2005

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                    • #11
                      Re: Lead must be replanted as part of battery change????

                      Yes, I really want this IC to go in remission. It seems like it doesn't go away easy. It looks like the best I can hope is managing the symptoms and doing my best to keep the pain away thru diet, medications, interstim device, and relaxing. So you have had IC for alot of years. I would have thought that it would have went into remission for you by know. With you having so many years of the interstim working for you. Do you still follow the IC diet closely? Are you on elmiron? I am and I really hope to someday getting back to eating and drinking more normally. I have gotten used to the IC diet, and it isn't the end of the world, but I would like to be able to eat and drink without having to think about what I have to put in my mouth. I hear about some people who are on elmiron long enough who go completely into remission. I hope to be one of those people some day.
                      Last edited by neohioic; 05-05-2018, 01:06 AM. Reason: just wanted to add more info.

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                      • #12
                        Re: Lead must be replanted as part of battery change????

                        I haven’t ever had a full remission but I’ve certainly had times when I felt very good for a long time. I was a exec in a big company until retiring young last year at 55 so I’m hoping that the reduction in stress will yield even more symptom relief. Most people with IC that I’ve known over the years don’t go into a traditional remission (where the disease stops) but they get to a point where they can manage their IC symptoms and do very well. And it can settle down enough that you can have things back in your in diet in moderation, and with symptom management that you couldn’t at the beginning.
                        I don’t take elmiron- I did for years but it didn’t have any benefit for me. I take ditripan for frequency - I’m a retainer too so the SNS stopped the retention which was great. One of the biggest pain reducers was pelvic floor therapy- it’s not the funnest thing to do but it has relaxed the retention a lot and significantly reduced pain.
                        My SNS is off right now as I await my battery replacement surgery and I am in a lot of discomfort that I’m not used to- so overall I think my SNS picks up a lot of my symptoms.
                        My mantra has been to do everything that works for me and to treat the pain so that I don’t give up quality of life. It’s worked over the years as I’ve missed very little (can’t recall missing anything significant) and enjoyed a very full life and challenging career.
                        You sound like you are on your way- figuring out your best solutions!
                        Catherine
                        DX 2003 Interstim II implant 2005

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                        • #13
                          Re: Lead must be replanted as part of battery change????

                          Thanks for taking the time to write that. I kind of realize because this illness has been so difficult that I'm not going to get total remission where everything is completely gone and I can eat and drink whatever I want like before this happened. I'm kind of like you in the sense that I'm seemingly getting this disease finally into a place where I can live and not be in a constant state of suffering. I was in constant pain for a long time. Today has been a good day. Not as good as yesterday but a good day. All day, like 99% of the day I"m pain free. I get twinges here and there of some annoying pain but just the fact I"m sitting and not in pain the vast majority of the time is great. I may even have a full hour at times without even a twinge. I"m watching my diet very closely now. I think that might be part of the reason i've been improving so much. I won't even put a teaspoon of grated parmesan cheese on soup anymore. I do go to physical therapy. And it does help. I had to stop getting internal therapy because I developed an anal fissure which is healing thankfully. I do 20-25 minutes of heavy groin stretches every night that I learned from my therapist and a 30 minute sitz bath in darkness where I relax and pray. I'm not doing these things while I"m having my interstim trial because I don't want to mess of the wires placement. Once they give me the permanent one and that is healed I"m going to continue my stretching and sitz baths. I never really thought I had frequency or urgency problems. But with the interstim in currently I"m really going a long time between going to the bathroom. Like maybe 6 hours or so. And I drink alot of water. I would really like to get to the point where I can drink alcohol again. I"m just too focused on getting pain free. Nothing is worth getting into constant pain again. Or even to the point where I"m moving backwards significantly. My motto is "nothing tastes better that feeling good!".

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                          • #14
                            Re: Lead must be replanted as part of battery change????

                            New stimulator was implanted last Thursday and is running perfectly. I’m feeling so much better with my system on - stim replacement was no big deal- sore for one night and a little bit to get over the general - all is AOK though!
                            Catherine
                            DX 2003 Interstim II implant 2005

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                            • #15
                              Re: Lead must be replanted as part of battery change????

                              I am glad to hear you are doing well! Yay!!
                              Jolene

                              "Life is what happens when you are making other plans" John Lennon

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