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View Full Version : problems after changing of neurostimulater after 7 years


ofra
09-19-2006, 06:01 AM
Hi, everybody!


I have IC since 1994 and had problems being diagnosed for many years. i was tols, it is all in my head, tried numerous antibiotics, nothing worked. At last in 1996 I was diagnosed with IC and went through horrible time, even though finally I knoew, what was wrong with me. I tried everything, nothing worked until tried Elmiron. Elmiron helped me a lot, but I still had some pain and urgency. After being on Elmiron after two years my doctor suggested Interstim. I went ahead with the surgery in October 1999 and it was a great success. my pain was practically gone, I had my life back. I still had to go more then a normal person, but my pain was gone, even though Interstim is not approoved for pain. I had 7 years of pure joy and never had any problems with my implant. During this time I was also diagnosed with Endo, but I found a cure for myself and my life was good.
On July 24th I had to change the neurostimulater, since my battery was running out and was changing the stimulation by itself. Everything was great right after the surgery and it healed perfectly. I still had all the positive results and was very happy. 6 weeks after my new implant i started having some discomfort and lite pains at the site of the implant. Also it feels, that I have stimulation right at the implant site., which is a pretty uncomfortable feeling. I feel my implant all the time, there is no bad pain, just discomfort. the scar is normal and there is no irritation or redness. I still have all the benefits of the implant, no pain and no urgency, but I am worried, that something happend to my neurostimulator. I was on vacation 6 weeks after surgery and it was a pretty active time for me, swimming, snorkeling, hiking. i am wondering, if any body had experiences like this? Any input would be appreciated. i am going to the doctor tomorrow.

asn
09-25-2006, 06:15 PM
I had my batteries changed on the first of this month.
Maybe you are still swollen at the pocket of the battery.
I have just developed some kind of burning. I hope is part of the recovery... I will wait maybe two days to see what it is... but I'm a little scared too.

icnmgrjill
09-25-2006, 09:34 PM
Sometimes patients can develop infections down in the pocket, especially after a surgery or revision. ICSonja had an infection that was so deep that her belly filled up with fluid... so don't wait on this! Please talk with your doc asap about this change. You've had great success and he knows that and should be respectful enough of your experience for you to share when something is wrong! Good luck! Keep us posted!

Jill

ofra
09-26-2006, 05:33 AM
Ladies,
Thank you for your support and interest.
I am going to see the doctor and my medtronics Reps tomorrow. I developed a totally separate stimulation at the implant sie. My stimulation is very low, it is at 0.3, but this weird bit at the site is very strong. They have no idea, what it is. When I turned it off, the bizz is gone, but I still have hip and leg pain. They told me to turn it off, but I am terrified to do so, since I am scared my symptoms will be back. So far I have no pains. My rep said, maybe we will have to reprogram it, but I know, in my heart, something did happen after my vacation and it is not working properly. I will insist on pocket revision. I was also wondering, who is responsible for my 2nd surgery and revision fees, since I just had the battery changed in July? So many questions and no answers, because they do not know. My doctor is a very good doctor and a friens, since I am his patient for 10 years or more. I will let you know, what happens tomorrow and thank you again.

ICLori
09-26-2006, 05:49 AM
Ofra, just wanted to say "welcome" and I hope that the doctors and medtronic reps will be able to help you and that you won't need another surgery. I'm hoping for the best for you!

Blessings,
Lori

ofra
09-28-2006, 05:31 AM
Hello, everybody!

I saw my doctor and Medtronics Rep yesterday and they think, that my device might have some fluid at the connection site. They think it is leaking energy. I have no idea, what it means, but they are reassuring me, it is not dangerous. I also have an implant pocket pain and leg pain, which is a separate issue since it hurts, when stimulation is off. I will have to have a pocket revision. I am seeing my doctor next Wednesday again, just to make sure my pains are not going away. I do not want to rush, but if I have pains next week, I am going ahead with revision. It is kind of sad, but I am pretty sure, it can be fixed, since I think something just moved and it feels like sharp edges just cutting and burning me from inside. I am worried and dissapointed. I was so lucky the first time. I still have relief of symptoms, because my lead wasn't even touched. It is sown into sacral nerve, so stimulation is the same. It has to be something with the implant moving, I am hoping so. My spirits are still high, if it was a great the first time, it is possible to fix it now!
Good luck to everybody!

BeBopBlair
10-11-2006, 11:46 AM
has anyone had the entire device removed??? I have had mine for almost one year and although I love the bladder benefits but it it very uncomfortable at times for me too. the lead is where it hurts not the battery part, I am barely 100lbs and i feel like this thing weighs a ton. I want to run and jump and leap for joy but this thing stops me.

ofra
11-16-2006, 08:58 AM
Hi, everybody!
I just had my pocket revision on november 10th. Unfortunately or fortunately my doctor didn't find anything wrong with the position of device or the device itself, so they just cleaned it and closed me up. Today is my 6th day after the surgery and 2-3 days ago I developed pain in my leg, which is burning like pain all the way from the implant site to the calf, even the knee. I also have a lot of pain at the site. i didn't have these bad pains after all my previous surgeries. I am in pain and they do not know, what is wrong. Did anybody experience pains like that right after implant? My doctor seems to think, I have unrelated nerve problems, but I do not buy it, since it all started at the site of the implant. he also says, that the device is implaned into fatty tissued, not muscle, so since they didn't touch my wires and leads, it shouldn't be giving me this pain. Any ideas, comments? any imput is appreciated.
I am kind of down, since I felt much better before the pocket revision and now wish i never went through this.

BeBopBlair
11-17-2006, 08:12 AM
I am having my implant removed in January thank god cause ithas been causing serious discomfort. does anyone have any suggestion on what to look out for or to avoid during that procedure??-B