Adverse reaction to the Med Tronic Neurostimulator

Have any of you in cyberspace had any experience with repeated infections from the Med Tronic Neurostimulator? My daughters had been in the hospital five times since it was first placed in September. The stimulator works great and relives her back and leg pain. However, the pocket where the generator was placed repeatedly becomes infected with staphlococcus aureus. Has anyone had a similar experience and how did you resolve the problem? She is at the point of giving up on the device.

Med Tronics offers an allergy test kit to any physician that inserts their neurostimulators at no cost. It comes with vails of liquid containing all of the five separate materials, such as titanium, silicone adhesive, etc. that will come in contact with any of the patient's body parts. My daughter's neurosurgeon had never heard of the free test kit, and doesn't feel comfortable administering the allergy tests. If any of you have had any experience being tests or with infections, please share.

Thanks,
Concerned Mother

Hi, Coding Queen,
I don't have any information for you about the stimulator, but did want to welcome you to the HW forum. Hopefully, others will have some of the information you're seeking. You may also want to search old threads.

PaLady

Thanks for all of your quick replies. Unfortunately, the neurostimulator has been completely removed and replaced once; the generator was removed a third time and part of the leads have also been removed. In between times, my daughter was taken back to the hospital and into the operating room. That time, the doctor removed the generator from the pocket, cleaned it out and disinfected it, then put it back. So to date, she has had two complete systems. This last surgery, he removed the generator and clipped and shortened the leads from the middle of her back. She is once again on three antibiotics, 2 IV and the other oral for the next 30 days. He plans on bringing her back into the hospital and creating a new pocket and putting in a third new generator. She is now wanting the remaining leads to be removed and just give up on the whole thing.

I am thinking that there is some underlying problem that has not yet been identified and addressed. I still believe the definition of insanity is to keep doing the same thing and expect a different outcome. All comments are greatly appreciated.

Thanks,
Coding Queen, JoAnn

Dear JoAnn,
Your daughter is certainly going through a version of h*ll isn't she? I know nothing about the stimulator, but do know that docs can keep trying things on our spines over and over - like repeated surgeries. I had one dual fusion last Sept. which failed, and my surgeon now wants to try a 'traditional surgery' since I was one of "one or two' patients for whom his minimally invasive approach didn't work. I'm saying no thanks, even though that means my only option is oral pain meds. I don't even want to begin with stimulators or pumps. No more cuts and invasive stuff to my spine, because I figure every time they do something, more scar tissue is created which can cause further problems. Now I'm in my upper 50's, and I'm guessing your daughter is much younger, so a lifetime on pain meds isn't exactly the path one wants to have mapped out. Have you obtained second opinions from, perhaps, a reputable teaching hospital? I don't know what your daughter has done or tried in the past, but usually by the time people get to stimulators they've tried lots of stuff. I don't know the answer for you or her, but I sure lean toward your thinking about repeating the same thing over and over. But I don't know about stimulators, so maybe this has to happen to finally get it to work.

Don't know if this helps or not. Wish I had more to offer.

PaLady

Thanks to each of you who have replied. I am comforted by your compassion and interest. Do any of you know of another manufacturer of neurostimulators other than Med Tronics? My daughter is in the unfortunate position of having no medical insurance and is dependent upon the Department of Vocational Rehabilitation for whatever medical intervention she gets. They have been more sympathetic after this last hospitalization and are seeking another neuro-surgeon in the state of Oklahoma, where she lives.

Do any of you know of a teaching hospital or medical research that is currently going on and using neurostimulators? I don't know where to look. She is perking up with all of the antibiotics and the generator out of her body. During the past nine months, she has only felt good after removal of the stimulator and completion of a course of antibiotics. Her doc says she does not have MRSA. However, staph aureus is always the bacteria that is growing.

Have any of you have a better alternative to pain management than pills or the stimulator? She is also suffering from Charcot Marie Tooth disease Type 2, which is a major contributor to the chronic pain.

I wish each of you well and again thanks so very much for your encouragement and suggestions.

Coding Queen

Coding Queen,

That's great they finally took out the stimulator and your daughter is feeling better. Did they make sure to take out the leads too? I know in one person's case they didn't and he still continued to have negative health effects because of it. So best to make sure everything is out.

There are three makers of stimulators, Medtronic with their newest Restore Ultra (probably what your daughter had), Boston Scientific with their Precision Plus, and St. Jude? with their ANS? (Or maybe ANS is the name of division of St. Jude doing the stim?). The stims are getting smaller every few years and the batteries are getting FDA approval for longer life warrenties inside the body (ANS has a 10 yr warrenty I believe). I think they are also coming out with new types of leads or was of anchoring them that have a higher chance of not migrating. In another thread someone mentioned a site that has a forum with people with stims if you want to check it out to talk to people with first hand experience with all this.

As to alternatives to the stim and medication. There is the pump that injects meds into your system, chiropractors, physical therapy, acupunture, various excercises and streches, massage therapy, ... I don't know how affective some of the alternatives will be for her though. I suggest she go without a stim or other type of surgery for as long as she can to give her body enough time to fully heal and recoupe after all the trama to it with infection and repeated surgeries. Then once she is feeling good again revisit stims or the pump or something else.

Best wishes to her, you, and the rest of your family
Mami

I'm SO sorry to hear about your daughter's experience.  I'm not a doctor, but I do have medical background, and wanted to make sure you were aware, as Stella Marie was saying, Staph aureous is on everybody's skin, it can get into any wound and cause infection.  And exactly what Stella Marie said, it gets into the device, and if they don't use a WHOLE NEW set of leads, devices, etc., then the infection, really is going to come back.  I know that you said they took it out and cleaned out the pocket, etc, but did they put that same device back in?  I would look into that.

Also, maybe getting another opinion would be best, because if the doc is uncomfortable giving a free allergy test, which is SO easy, then you might want to see someone else, it sounds like the doc doesn't want to do anything extra to help out!!

I'm going through the trial device right now, I get it out today, so I'm not yet at that particular spot, but I hope that I was able to give some insite on the situation!!  Any other questions, feel free to ask, I, or someone else I'm sure would be glad to help!!  Please send your daughter my well wishes and luck!!  I wish her the best and I hope that she finds her way to pain relief!!

One last thing, I also agree with PALady, about going to a teaching facility/hospital, usually they are in the big cities or so, that teach medicine to aspiring young doctors, and they sometimes have a better idea of things because they see SO much more!  They are equipped well, I have worked in a teaching hospital, they really are very good!!

Good luck, I hope that helped a little!!