My Recent Interstim Saga

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Back in February, I had my old Interstim device removed with a new one. It was time to replace the old one due to its age and that it stopped functioning. A new one was installed in my left buttock as the old one was in my right buttock. It worked fine for three weeks, then suddenly stopped working. I let it go for a few weeks and then contacted the Medtronic support team. The lady was surprised to find she could not get the thing to work. I made an appointment with my surgeon and a Medtronic rep. The rep did an impedance test and found that the device indeed was no longer working. I made arrangements to have the "broken" one removed and have a new one installed. I had to wait about two months to get scheduled for that.

After about a month I noticed the lead had become disconnected from the battery. This happened one time while I was showering. I contacted the surgeon who immediately became concerned about infection. She scheduled surgery to remove the battery and the lead.

I am now waiting until June 8 to get the next neurostimulator installed. I have been given no explanation as to what happened. I have more own thoughts, but have no way to be positive.

I'm convinced the Medtronic device will help me with my OAB, but wanted to share my saga with those who have been following me for over a year and with those who might like to know of my adventure.

 

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Fleemore,
Genuinely concerned about the failures with your interstim. I don’t know if you had seen any of my earlier posts, but as much as the Surgeons & support folks play down the risks, they can be extremely dangerous if not handled properly. I’ll try to keep this short, but I have had 5 individual installs + egual# of extractions!
1) Implanted in the wrong location, moved itself around until infection & bad swelling set in and after repeated no return calls from surgeons office went to ER and it was immediately removed and I was kept in hospital 3 days on IV antibiotics.
2) implanted just below previous location, lasting about a week before it tore through into the original pocket causing incredible pain as the pockets continued to tear creating a new pocket the size of my right upper buttock. Once again removed, but needed 10-12 weeks to heal.
3) similar to #1, yet this time I was blamed for exercising (Which was one of the main reasons to implant to start with) removed….
4) Similar to 2 but had raging infection, and fever of 103. I was so swollen I had to go to the ER in nothing but a robe & a diaper taped to my ribs & thigh, the pain so intense could not even touch from knee to ribs. Was mis-diagnosed with MERSA and immediately taken 90 miles in a “Emergency Isolation Unit Vehicle” (a very expensive, yet unnecessary ambulance)accompanied by 2 guys in full HASMAT gear to a hospital with a “Brand New” full isolation wing. Built at the cost of $MILLIONS$$$$ of dollars to handle the encroaching threat of ZEKA VIRUS.Just an FYI: I was in Northern Illinois, ZEKA never made it north of Miami?????
Truly trying to keep this short, I literally had to break out of the hospital in nothing but my hospital jonny and sticky socks in early January.
By March my teeth started falling out from the Overdose of MERSA drugs, when I never had MERSA. I had to replace every single tooth, at a cost of over $130,000….

5) Was installed wrong again, this time the wires moved around landed on my pericardial sac, shocking the heck out of my heart ending up in cardiac arrhythmia, ambulance ride and emergency surgical removal….

You might be thinking: This guy must be a real moron to go back again & again, but I suffer from extreme chronic pain, was over 600mg a day of opiates just so I could get out of bed & my only other option was having these same idiots install a Morphine Pump injecting pure morphine into my spine 24/7. Mortality rate with great doctors was about 50/50, now they are all but banned except in end of life scenarios.
Please be careful out there!

 

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@fleemoore @Sprung87

WOW! Those are scary stories! :O

I have had 3 implants, plus a heart pacemaker, all from Medtronic. Thanks be to God; I have not had any of the problems you have described.

In the past, I have posted some recommendations that deviate from the usual placement of the "generator" under the skin. Rather than having it in the buttock area, I told my surgeon that I wanted it to be above my beltline on my back. So, that is where it has been for years. My doctor warned me about doing excessive exercising that would cause the wires to come loose.

Years ago, when I had it implanted for the first time, the Medtronic rep said that my surgeon was one of the best he has seen perform the procedure. So, your doctor may not be so skilled as mine. You might have a malpractice issue to pursue.

 

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P.S.

I have the heart pacemaker under the skin, just below my left collar bone.

Also, the Interstim for the bladder has always used the same pocket.

 

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Mine has been trouble free for a year and a half. My urologist who did the surgery was extremely meticulous with the lead placement, and insisted on doing that while I was awake so I could give feedback on how it felt. I've had to go to Medtronic once for a software adjustment, and may need another tweak to the software, but other than that I've had zero issues.

 

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Mine has been in place since last September. I still have about 80% improvement in leaks. The only downside has been backache, but I already had this, so the worsening pain is likely to be worsening discs rather than the implant.

 

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@ltapilot

We have compared notes on this before.

My urologist who did the surgery was extremely meticulous with the lead placement, and insisted on doing that while I was awake so I could give feedback on how it felt.

I have a very low pain tolerance, so I have always insisted on being totally sedated for these procedures.

I just had my Medtronic rep add some new programs to my generator. I called him on his cell phone and he met me in the waiting room of the doctor's office. It only took about 10 minutes.

It seems that over time the nerve gets used to the setting that I am using. That is when I start making tweaks to the program and/or amplitude. I was told that if I set the amplitude too high, it shortens the battery life AND it can "burn out the nerve"! The amplitude can be set from 0-12. If I find that I have to turn it up past 3.5 I get nervous. That's when I call the Medtronic rep.

He remembered that I also had a Medtronic dual-lead Pacemaker. He said that he has another patient that also has a Pacemaker and Interstim, PLUS a third one for back pain at L4/L5. (Wow, that's three Medtronic generators!) I responded that I do have a fusion plate at L4/L5.

 

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MezaJar, that’s interesting about having the rep make some tweaks, I’ve ask mine to make some program adjustments but they don’t ever seem to want to do much. Some of my settings are just too painful & sting, I’m not able to use them. I’ve asked for changes to be made several times. I don’t know how anyone could stand an amplitude of 3.5, maybe I just haven’t had mine long enough, it’s been 3 years. I rarely go over a 2. I recently had an ablation to the nerves on my lower back, L4/L5 somewhere there, I forgot to turn my stim unit off & boy what a sphincter shock I received. The ablation is one of the best things I’ve ever had done, no more back pain, well at least for another year, has to be repeated.

 

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@Lee at my last check up the medtronic rep changed the band width of my interstim, this had allowed me to increase the strength of the signal. So far the change seems to be working well.