I’m writing this because of emails I have received from some of the original DHADM posts. Not much information is out there about this procedure. So here is my story and troubles I have encountered:
In my early 20’s I had open heart surgery to correct a birth defect in my heart, a PDA (Patent Ductus Arteriosus). I went in for a clean bill of health and ended up having surgery 4 weeks later.
Due to the original surgery, major nerve damage was done to my intercostal nerves (the larger nerves that run on the inside of the ribs – so I’m told). I lived with the pain for 10 -11 years until I couldn’t function any more. The only way to describe the pain is that on a daily basis it felt like someone was pulling a knife from my chest to my back. I was almost bed ridden.
After trying for years to get help and comfort I found a pain clinic that wanted to start from scratch. Stop everything and start over. I agreed.
I was on every pain killer known to man and every other drug you can imagine (neurontin – 4000mg/day, amitriptyline – 200mg/ day and many others) I was given the max of everything possible and it didn’t make a dent in my pain. 
It was time to move to the next step, injections directly into the intercostal nerves. After 20-30 of those (one of which one punctured my lug), a spinal tap, leaking spinal fluid…and the list goes on, it was clear the treatment was not a long term solution.
The next phase was to have an ANS implant (IPG) trial (everything external) before the actual implant. The trial sucked but helped the chest pain so we moved on to having the internal installation in my back, with wire leads that ran inside my spinal column to the effected nerve damage. The result was to feel the shock stimulant instead of the pain. It was a hell-of-an-ordeal. But it worked. I went from having trouble getting out of bed in the morning to being almost back to normal.
The problem with this solution was the battery life (of the implant). 3 years and I would have to be cut open and have a new one put in.
The 3 year mark was up in November of 2006. The battery was done. I had a new battery installed. The problem was the placement. The new doctor (now here in Seattle) wanted to move the battery to my abdomen. The back was a problem for 3 years. So I had the new battery installed and moved from the back to the front. Which took having an extension lead run from my back through my abdomen, resting above my waist on the left side. 
This took some additional surgery and some wiring. It was very painful. I now have another incision in my front and a “re-open” on my back but they didn’t have to replace the wires in my spine. By this point I’m looking like Frankenstein.
Everything went well, another 30 stitches, a 7 year battery, a month or two recovery and I was feeling good (respectively).
A month goes by, January 2007, while driving I had a huge electrical shock inside. My fingers curled and my toes pressed into my shoes. Something was wrong. I would have crashed my car if I didn’t have the massive magnet that turns off the device.
I went into the doctor and told my story. The x-ray showed that the wires that went from my back and into the device had broken off. The wires looked like they had just snapped off or been cut with wire snips.
The same week, I had the entire surgery all over again. New device, new wires, 2 new incisions and another 2-3 months of recovery. 
In a matter of 4 months I have had the same surgery twice because of faulty equipment.
The long and short of it is that I’m no longer in pain from the first surgical mistake, the years of trial and error have caused daily pain of another kind.
I’m in less pain but still uncomfortable because of the repeat procedures but on the mend.
The moral of this story is that recovery is hard and the road to it is sometimes worse than you 
can imagine. Living with technology inside you is not an easy life, the decision to have an implant is not something to take lightly even if it’s the only solution. It can be as frustrating and painful as the problem they are trying to fix.
In the end, the result allows me to have a somewhat normal life when before I was afraid to get out of bed. Now I have a device that has a life span of 6-7 years which is more than double the life span of the previous one.
It was a good thing to do but it’s been a hard and long process. I write this for those of you that have asked about one of my first DHADM posts. Those of you that think pain is something you have to live with. Pain may never go away but the degrees of pain that you live with can be controlled.
I’m not a great writer so forgive me for anything that doesn’t sound right or misused…this is more for anyone that is dealing with similar issues and getting an understanding of what it takes to deal with it.
Tags: ANS, Chronic Pain, IPG
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[…] and crew are something special. I actually contacted Kat over a year ago to cover my surgery scars (I have another 3-4 to cover since last year). She is one of a handful or artists I would let mark […]
Ive known about your surgeries for a long time now, but it was pretty interesting to learn the details behind it. You’re like a cyborg now :)
Getting inked for this ordeal is pretty fitting. I got inked as a memorial for my father who passed in 1997. It felt good to put a visible mark on me to show what I had gone through at that time. Thats what tattooing should be, a well planned and meaningful event.
Thanks for sharing your update. What an ordeal even after you think things are fixed. I remember seeing you after the ANS implant (IPG) trial and you were walking around the office so much more comfortably.
BTW - I loved Sequim and my husband and I are moving there in 8 years.
[…] I really do hope for nanobots to go in and fix my nerve damage. […]
I found your website from your posting after I posted on counsel.net. Did you ever contact a lawyer due to faulty equipment? I am looking into it, because you are right, the time it takes for recovery and surgery and the just the mental strain (not to mention all the physical pain) is so heavy. I have small children and there primary caregiver and have no help with them (one is in school, the other 2 are home with me) I had my scs implanted in oct of 2007 and it stopped working without any reason (xrays don’t show any breakage, so surgery will be the only way to see what has happened) after 6 months. There is a company genesismed.com that deals with faulty equipment. You haven’t shown that you have sought any legal recourse, so I was wondering if you at any time looked into it, it may help me in my pursuit. I know when they go to take mine out (or replace battery, I will not replace the leads now if that is the problem, because that recovery time is longer than just the battery, and I had the recharageable batter put in originally). Sorry if this is so long. My heart goes out to you and good luck with everything. Thank you for sharing your story.
Thanks Nycole for the comments and no I have not taken legal action, I’m waiting to see how ANS deals with the problem. They will not admit to faulty equipment and say the wire broke in 2 places due to “extreme stress”. This is impossible because I could barely get around.
So, if they don’t cover the replacement cost and surgery cost I will go after them. I was billed full price for both surgeries and my insurance doesn’t cover near enough, not to mention the months of recovery and the inability to travel and make a living.
I’m sorry to hear you are having problems with your SCS too. It’s like a double punch when you think everything is going to be ok and they get worse. Let me know how you ordeal turns out.
DS: I spoke with an attorney yesterday who gave me a name of a company that deals with faulty medical equipment. I in turn called the company and spoke with the doctor. He was EXTREMELY informative and professional. Basically the most important thing to do is to retain your device after the surgery , then hand it over to your attorney at which point you would hire an outside source to be with ANS to test the device to find out the problem with it. You DO not want them to take it from you because they can say or do anything they want with it. He also said that this product has been very problematic and that I should pursue this case (he was NOT trying to get my money…he told me I should find an attorney who would not charge me by the hour but by if I win and also that I do no have to hire him, but he would be happy to offer advice if ever needed, he is extremely knowledgeable in this area. He said, and this is where, you and so many other people who are suffering from the same issues need to realize that I AM BEING SUBJECTED TO SOMETHING I SHOULDN’T HAVE TO BE. In other words the product should have worked the first time around. He also sad that th company of course would rather settle then make it be publicly known. I’m really, really surprised there isn’t a class action suit. Do you have your equipment?
The wire should NOT have broken in 2 places. I hope that this never happens to you again. The sad thing is it does help , but it’s such a catch 22, like you are just waiting for it to break again. It’s maddening.
I will let you know how things turn out, I’m a bit scared cuz I’ve never done something like tis before, I also wish I could do this on a larger scale for all the other people who are going through it.
Take care.
I don’t have my equipment but will try and get it back. I’m sure that will be a fight on its own.
In some ways we are making this public and DHADM gets some good traffic and we own other sites that can get a million hits in a day…so if we need to make this more public, I/we can.
If ANS is not fair (I’m only looking for fair)this will all become very public because others should understand what they are saying yes too.
I will keep post on this and I look forward to everyone that can, comment.
Thanks for all your effort and comments Nycole.
I will keep you posted as my case progesses too, I don’t want other people to slip through the cracks. Sometimes, I often wonder if my pain can help other people, because can’t seem to make any other sense of it otherwise. It probably would be difficult to get a hold of equipment now and if you did they would probably have fixed it or something, who knows. I just started to think seriously that it didn’t seem right that if I went into the surgery room and they took out my equipment and they investigated what was wrong with it that I would get a fair view of things….so we will see. I guess I will find out soon. Wish me luck…I only hope it helps other people too.
I’m glad to hear you are doing better. I deal with chronic pain but mine is no where near what you suffer from. I have an auto-immune disorder that is slowly taking over my life and I can only imagine your pain. BUT what I wanted to say was to please follow up the with lawyers. My husband is disabled and one of his medications gave him diabetes. It was never disclosed on the warning label and he was hospitalized near death over this. We did sue. This past April we were able to buy our first home with the settlement from the drug company. While it would have been better for him to have never had the illness to begin with, in the end it nice to have a home and stablity, something we could never have afforded before without the downpayment the settlement afforded us.
Fuzz
Fuzz:
I’m sorry … isn’t it horrible what these companies do for money!. I ended up postponing my surgery becuz I was too scared to go thru with it right now. And I do want to find just the right lawyer, Could you tell me who you used? Feel free to email me directly at .
I’m glad that thru the trouble you found some sort of “financial” relief…that would be nice for me too, but I don’t know if it will happen,,,I’m hoping that other people who are in my situation can seek the same lawsuit because I know I’m not the only one going thru it.
Blessings!
Nycole, I’m talking to a few of them right now. I will contact you after I find the right one.
I promise to keep u updated.
You too Fuzz, too much of this kinda thing going on.
i ended up having the scs replaced the day before thanksgiving. Was supposed to be released on Thanksgiving to be home at least with my kids, and I couldn’t even get up to walk, I didn’t even get to see my three babies on that day. Well, it is what it is, eh. i am working directly with the scs co to see if they will compensate me somehow, we will see. My surgery was not normal, for some reason, I have a 10 inch scar on my back when normally it’s about a 2 inch one??? Is what I was told by every single other doctor. I have been in pain for 6 weeks with horrible horrible muscle spasms, the stimulator does work great but can’t use much because sometimes makes the spasms worse. They took out almost 6 inches of bone, when I was told it would be 1/2 inch!!!!! Will let u know if the scs legal dept works with me and reimburses me for pain/suffering and costs incurred for childcare, house cleaning, and the like. It’s been a literal nightmare. I would NOT have done this surgery had I know that it would have been this extensive, I would have waited….again, it’s said and done. I’ve been trying to think things could be worse, but apparently every time I turn around, I’m this phenomenon! Good luck to all of you in pain. I pray for people in pain every single nite and their families. It effects us all.
I’m still dealing with ANS mucking around with policy. I have some documents that I will post in a new post soon so you can see how they are treating me.
Nycole, I feel for you. I’m not having much luck on my side with ANS. I’m not asking for much so I can only imagine how hard it is for you.
Check back soon for an update and please comment if you have an implant and the things you are dealing with, I’m sorry to say that we are not alone.
Had mine implanted in Dec, 2007. Found out that 95% of Docs doing the implants are F@#$ing anesethiologists and NOT neuro-surgeons. I had mine implanted for C-5 to C-7 related upper extremity pain. I now have partial paralysis from the waist down. My doctor dropped me and the SCS company is NOT helping me at all. I can’t raise my arms over my head, no range of motion in my neck, and can not bend at the waist or dress my self. I’m 4 months out, and now traveling to a different state to see if I can find a neurosurgeon to either remove or fix this. The stimulator has come undone and is putting ALOT presure on my spine. I really hope it doesn’t perforate my spine, I really don’t want to be a quadrapalegic because of some greedy doctor. The company that makes my SCS pays their doctors a 10 thousand dollar “finder” fee for every one they implant. That’s not counting the 90 thousand me and my insurance paid this doctor. I did find that there are only 3 SCS company’s in America. I think it’s time for class action lawsuits against the SCS companies. The Federal government has really screwed us all when it comes to holding the greedy doctors accountable for what they are doing to us. I’m in four times more pain now than I was before. The RSD pain is fully back. My doctor bought himself a 150 thousand dollar Mercedes 2 weeks after my insurance company paid for my surgery. Then he expanded his office and did 3 more SCS implants within weeks of mine. I have a 5 year old that wakes up screaming because she thinks this is going to kill me. The surgery was SUPPOSED to fix me, not make me lose 25 pounds. I know it could be alot worse. I just have to remind myself that daily. All 4 of my kids are healthy, and there are alot of kids out there that aren’t.
I had a Boston Scientific SCS put in on 4/4/08. No one told me how horrible I would feel–I have diarrhea and can’t stop crying plus I have pain in my shoulder blades. Can someone please tell me how long I’m going to feel lousy? I don’t see that it’s helping my leg pain at all even though I thought the trial helped me some. I have neuropathy from a car accident.
Dear Ginger - I found out after the fact that my first was installed by an anesthesiologist but my second was by a very good neurosurgeon here in Seattle that has since retired.
I did have one doctor tell me he was uncomfortable with the procedure, on the second implant and referred me to a neurosurgeon, which was the right thing.
Ginger, I’m really sorry that you dealing with some and even more problems than I am. I know it’s not comforting but you are not alone. If nothing else, anyone you know that has a problem, have them come here and sound off. We can have a unified voice that has volume; this is not only an “equipment” problem but a medical practitioner issue.
I will have a more specific web property up soon that will be specifically about SCS, I will post it here on DHADM.
Again, Ginger, I’m really sorry to hear your story. I’m going to do everything I can to make this more public and drive change.
Susan – Once again, I’m sorry that another reader is dealing with extra physical issues because of one that was supposed to rectify at problem.
There is nothing worse hoping to be fixed, being sold a solution, believing in the medical device ,with it ending up causing more problems than before.
In many ways, I was lucky to get some pain relief but the extra surgeries, cost and new pain certainly does make you wonder if it’s worth it.
Susan, I don’t have your physical side-effects and I have no idea when they will subside…or if they will at all. I know it’s not comforting but I have had 3 impants now over a 5 year period and a year after my third surgery and I’m still have pain and fear about what is inside me.
Please keep commenting and telling your story. Like I said in my previous comment, I will get a site up soon that is specific to SCS problems…I will invite everyone that is dealing with them (including family members) to voice what’s going on. Maybe together we can make a change.
I was just told from my dr that I need the stimulator & from what I found out doing my own research on the machine, I don’t know if I want to have it done. I had surgery done 4-12-07 then another one on 9-13-07 due to staph infection. I have not gotten any better. I regret going through with the surgery & I don’t want to feel the same way afte the stimulator is in. From what I have read on here so far really has me scared & rethinking about the whole thing. Is it worth getting it done & going through the healing process? I don’t want to end up in more pain then I am already in now. I’m back to sleeping in my recliner, haven’t slept in my but for only 3 weeks since 4-12-07, my husband is very supportive towards/for me but like him I am also tired of sleeping alone. He wants me to get a 2nd opinion, but I don’t want to have to go through the rf’s again or the si injections. It’s very painful & has never made a difference in the pain. Even with my pain meds the pain level is at a constint 7 & goes up to 10 if I don’t take the meds 2 hours before I’m supposed to. Do you think I should get a 2nd opinion? Did you get one? Do you regret going through all of that pain? Has your pain level dropped any since you got the scs? Thanks for listening to me - I haven’t had anyone to talk to that has gone through the pain. I can talk to my husband & adult children, but they have no clue when I try to describe the pain & how it drives you out of your mind. So, thanks again!!!!
Debi
Debi, I would be happy to talk to you directly. I think any surgery is a risk and I have had plenty. I regret having them all but I had run out of options.
I will email you directly my contact information. I have been thru this 3 times now and go in for a follow up tomorrow at UW.
Stuart
im in the same boat as a lot of you. I had a L4 L5 lumbar fusion back in 2000. After 8 years i still have pain every day. Im sure most of you know the feeling. Not wanting to wake up in the morning knowing that the moment you open your eyes the pain starts for the day and wont stop till the next time you close your eyes and sleep. My doctor has decided to try a SCS. hes looking at using one that has life long battery so it will never have to be replaced. I was pretty set on getting it done but after reading some of the things here im a bit uncomfortable about it now. Im seeing a lot more bad then good. Does anyone have some decent advice that had some good luck with it ?