Neurostimulation stimulater implant

Compensation is the only thing on my mind right now uniquelyme........The unit I had inputted I now find out was  not yet okayed by the FDA and the second battery that was put in less than 60 days ago is already heating up when I recharge it that it sacares me to the point that I think it is going to explode.  I work around and know aboput electricity.  Not good when it goes afowiceburgol  .  The point of all of this is is the fact that I was lied too on 3 different occassions now.  When I was having problems, after I had the battery switched  out and now after the fact when I am still being told that they have no idea what could be amiss...........DAUGH,  can you spell lie and understand where my brain is at??It is one thing to stretch the truth, but an out right lie is a lie...And I have been lied to now for the past 17 plus months. Would you feel; that  this should be worth compensation if it was in yhour back??  Not a very good thing me thinks........I have only witnessed at least 200 people who have  under gone the same procedure I had in the last 12 or so months here.  The lie keeps growing and gaining speed.  Think about it.  I am mad and hurt both in body, mind and spirit as well as money wise.  Each time I had to take off my wife had to take off from her employment to take me.  Cannot drive yourself home under drugs.......More money and lost itime.  I believe that is the meaning of lost time and fair compensation for unprofessional conductt by a dr. and or drs. med. group........Hopefullly this forum will not be deludged by my fellow causulties from here in ///san antonio, tx.  I am just the tip of this iceburg in this area.  dlt

Hello all again, just  finished doing a little experiment with my laser temperature shooter.  My back unit when in operational mode runs at 87.7 degrees while my opposite side with no implant is 87.1 degrees.  Appr. 8;inches between the two points.  While my charger is reunning the temp. rose to 88.4 degrees and is again turning itsself off before it finishes recharging itself.  Happy days are here again.  Another question is who or ;where are the other forms of these units sold,,,,,,meaning the medtronic and the others I have heard mentioned??  I do not think my eon has a very good track record compared with names I have heard from the group.......I have a meet with these nuts ?Friday,  see if ;they will tell me before I tell them what I know.  Should be very interesting, to say the least......Will let all know the outcome.  May help someone else out there..Later on,.. dlt---------still---- aliveso4

Yes, I am confused too...Why would a Dr. install a unit that isn't approved?  Isn't that asking for a lawsuit?  I mean, unless he got his medical lisence in the tropical rainforest of Uganda or Ziymbabwa isn't that illegal?

I know if I were about to have this unapproved unit put inside my back I would run run run...far away, and never return to that Dr.  Maybe I'm being too harsh, but it seems kinda hinky to me...

Me.

I'm still confused as to what unit was implanted in you that wasn't approved by the FDA in March of 2009...? The information in the FDA link above wasn't about a lawsuit and it wasn't about a unit that didn't have full FDA approval for use. If that's the information you based your statement on, I think you seriously understood the meaning of the letter in that link.

Hmm I'm glad this popped up, as this was something the Mayo guys and I talked about last week. The last time I went up there they were really pushing this, the guy I saw last week said we'd put it on the back burner, pull it out as a last resort. I was talking with my physical therapist about it, and she was shocked that they would consider putting it into someone my age (23), especially as a woman. She is pregnant herself, and told me about how much the spine changes during pregnancy. Hopefully this isn't ever something I'll have to deal with, but now I'm curious. Have any other young women had this implant? Were there concerns if/when you decide to have children? Like I said, hopefully this doesn't become an issue for me, but now I'm really wondering if this is something that doctors are keeping in mind. Hope everyone had a relaxing, pain-free weekend!

Jenna

Jenna,
I had mine implanted at 28. Yes, it could be impacted if I become pregnant. I have mine implanted in my buttock. I had a choice to implant the battery pack just below my collar bone or somewhere lower. I wanted it not to show if I wore low-rise pants (I know, totally vain) so that's why I picked where I did. I'm very happy with my choice. Honestly, I was literally bedridden 100% of the time more days than not. I couldn't even get up to use the washroom. So the reality is that pregnancy would have been high-risk even without the stimulator implanted. I made peace several years back when I first found out I have Chiari that I would adopt children rather than try to have my own. But it is a bit of a risk. Sometimes you can take every precaution short of abstinence and still end up pregnant. So I have a fantastic ob-gyn who is experienced in managing high-risk pregnancies, including experience with 5 women who successfully delivered with neurostimulators/spinal cord stimulators implanted prior to conception. You can still have ultrasounds just like normal. There is a chance, though, that the leads can move (especially if you get pregnant within the first 18 months after the implant) and that could affect how much relief you get. There is a chance that the weight gain could cause problems at the battery pack site. I have experienced that even with as little as 10 pounds of extra weight. This is especially true if you are underweight or at the bottom of your weight range. In those cases, the battery is implanted much closer to the skin's surface. There have been some reports with people putting on weight post-op and ending up with the battery pack pulling the skin taught & a few cases that were not properly managed where people even developed a small hole in their skin where the battery pack showed through. They were all treatable, but obviously any of those situations are less than ideal.

I would strongly recommend that if you are considering the stimulator implant (and please, do not do it unless your pain is totally unmanageable & is not able to be treated by any non-surgical options), that you sit down with both your PM & your OB-GYN and discuss how pregnancy could affect the stimulator. I haven't followed the most recent research, but originally there were some questions as to whether it was safe for the baby to turn the stimulator on while you're pregnant. Perhaps that has been resolved. But truly, the stimulator implants, while not as serious as fusion surgery or discectomies, are surgery and should be considered as such. I don't understand people who refer to them as "permanent TENS units". It is surgery & a serious decision. If you're like me & you're life and ability to function & ability to have children is totally destroyed anyways, then I really would encourage you that adoption is a beautiful process. I know so many people who have adopted & were so happy. I can't wait until my turn to adopt comes. It's just not worth it to trade a healthy, productive life for a dangerous pregnancy and the possibility of having your own children. I am able to do so much more because of my SCS. I can get up & go to work & clean my home & visit with friends. It has literally been life changing.

but it is in the back of my mind always that God forbid I ever get pregnant it will be a rough ride ... no pain meds, no stimulator, extra back pain from the baby, plus all the complications of having an SCS. Not a pleasant prospect, but still, I would do the surgery again in a heartbeat.

wishing you well,
frances

Frances, thanks for the info. I know adoption can be a time-consuming but very rewarding process, my cousin adopted half-siblings that she originally fostered. I wish you the best of luck with that!!

Skye, I will definitely cross my fingers for you. I hope the insurance people get their act together!

Jenna

Thanks Sarah! I know that for me it was my of who was concerned that with the changes our spins go through during pregnancy, the leads would be displaced. I'm glad to hear Boston Scientific has figured out how to compensate for that! I hope your implant has been succesdul!

Jenna

Hi,

I had a trial using a medtronic neurostimulator. I cancelled the surgery because I couldn't get a appointment with the doctor before the surgery and there were too many unanswered questions. The pain relief was 100% during the implanting of the leads into the epidural space (surgeon working with medtronics rep). Once I was off the table, it took hours of programming and the reps never got the right spot. The trial was not very successful although I did get some pain relief by driving up the current to an unbearable high and then turning it off. The distribution of current was in both legs rather than in one which was OK with me. I can understand the benefits if it gets to the right area and in general liked the all day massage.

My questions are around the readouts from the trial. The reps were using a computer that seemed quite sophisticated. I would think from the printouts and from the nurses notes, there would be information that would be useful to the doctor. I wasn't getting that feeling when I went to the presurgery visit and the nurse wasn't going to answer any questions. I learned when the leads were pulled that only one contact had been available which meant that when I stood up, the lead had slipped so there was a lot of room for better programming but what else is there to learn from printouts and where would the nurse have gotten that information? Should I be asking this of my doctor?

BTW, the trial was not very painful - sore. Read a few posts about that. Wondering about the docs hands if the trial was so painful I would look for another doc to do the implant.

Wendy

Rusty I have a thread going on right now that is Named My Pending Surgery...

https://www.healingwell.com/community/default.aspx?f=16&m=1765646

I posted about being approached on getting the implant and I had a few questions.  So there and jump in and maybe we both can get some issues cleared up.

And welcome to our forums...

Laurie

I have an implant. I received it on April 12,2010. I have had 8 previous neck and back surgeries, with pain radiating down both arms and legs. Everything hurts. The last year has been complete hell. I can't do anything. I tried the 7 day trial in January. It was great, yes, I had pain at the incision sight and it was sore, but my overall experience with the trial was great, I couldn't wait to get the permanent one put in. They put in 2 leads into my spine, all the way up to C-3 and all the way down to the end of my spinal cord with the lead and battery ending above my right buttock. Out of all the surgeries I've had this has been the hardest to recover from. I am still completely exhausted. At this point I'm not sure if having the implant was worth it or not? It seems the leads seem to focus more on my arms and legs than my neck and back pain. I see my doctor in a week and have had the reps from the company try and reprogram the device a couple of times, but nothing is really helping completely. Has anyone had this experience and if so when and if did you start to feel better.

Thanks Skeye,
I appreciate the hugs. I've been trying to get a hold of my doctor since Friday. I think my battery has flipped. I haven't seen my doctor since my surgery. He has a PA and I saw him once and then I also saw the reps a couple of weeks ago. I've been calling reps and the doctor since Friday, I'm getting madder and madder as each day passes. I just don't understand why they won't call me back. I've only called one other time since my surgery. It's soooo frustrating. I know it's the battery because I'm charging it right now and when I placed the charger over the battery today it was in a completely different position. I even called again today and told them that and still no phone call. I just seem to be in as much pain as I was before the surgery, except now there are more pains, because of the surgical sites as well. Good Luck with your recovery.

If you're able to charge, then the battery hasn't flipped. When the battery flips, the remote and the charger can no longer communicate with the implant, so you can't charge and all you'll get on the remote is a failed connection icon.