SCS Failure

A

Alpine

New member
In March 2008, I had a spinal cord stimulator implanted. I knew the second I woke up that something was wrong. The pain at the lead site was awful. The doctors tried to reassure me that it was pain from the surgery. Well, every time I turned the stimulator on, I got horrible pain on the right side of my back, near the lead. So, here I am 5 months later and I have constant muscle spasms in the thoracic spine area in addition to my low back pain. The docs want to go back in and readjust the lead. They suspect that lead is too close to the laminotomy and that current is spreading into my muscle tissue. The SCS does seem to alleviate my low back pain when I turn it on, but I can only handle it for about 5 minutes.

My husband thinks that I should go to the next step and have a disc replacement, because we think that (or fusion) is inevitable anyway and he doesn't want me to have to recover from 2 surgeries. I'm terrified of replacement and fusion. Has anyone had a second SCS surgery to adjust the lead?
 
I have found that Zanaflex works best for me, as far as muscle relaxers go. I take them when ever I am having muscle spasms, which for the first several months after the surgery, was everyday. Since you have the paddle leaRAB, it is unlikly that they have moved, since they should have been sewn into the spine, but it definatly could have been sewn too closely to the lami. The 1st time that they tried to place my trial, they had to do it a 2nd time, for a similar reason. They placed the leaRAB in the wrong place and we had to re due it. I have already had a fusion, twice actually. If I had been given the choice of trying the stimulator 1st, I would have definatly wanted to do that...even if I had to go in and have it re-adjusted. The fusion recovery was something I will never forget.

As for the shocking feeling that you get, with the stimulator on, has the unit been programed by someone at the stimulator company? I had to have my programmed 4 times before we found a program that worked best for me. The 1st 2 times, I could not take the sensations at all. Then, I found 3 programs that work well for me. The lady who did my programming said that until the leaRAB were in place with scar tissue, they wouldn't be able to know for sure which programs will permanently be best for me...which is why we had to play around with it for a while.

I wish you all the best,
Lorie:angel:
 
lfoster21,

Hey again.

I am a canidate for a "unit". First I told it was a "medicine" transport device that was to be placed under my rid cage and then tubes would some how travel to my neck and deliver the pain med. The device (oh I am getting the hebbe gebbies thinking about this) is to be refill as needed (I forget..maybe monthly). I browsed through the Medtronic booklet and read some testimonies here and there. Yeah, I don't think I want to do have that in my body. Yet, I don't have much of a choice. Insurance doesn't want to pay for pain medicine to take orally. They want a device of some sort inplanted in me.

So then I told about the device you all are discussing here. I thought it was to be placed under rid cage too. I have yet to meet with a doctor about the trial. I do not like the idea of a Pain Managment doc doing the "surgery." Should a real surgeon, like a ortho or neuro, do the surgery?

How does this stimulator help stop the electrical pain down buttocks and legs into feet?

And for the person who started thread--what is one to do? we think we are making the best decision, but hell ascenRAB upon us after the decision and operation are complete. I have had three lurabar surgeries, and yes, as poster Foster (I realized that is the wrong spelling of moniker, but I can't remeraber presently the correct one, sorry to foster) stated, waking up from double fusion (heck, even single fusion I would imagine) is like no other pain I have ever known. And not to be able to get up and walk for 12 hours--it is a taste of Hell. I have it done twice. I wish they would have just put me to sleep for the 12 hours for that pain med unit...keep pressing that button but the pain remains--to think back upon it is causing tears. I hope you find a resolution to your present suffering and keep us updated on what is being done.

Foster, It appears that a PM inplanted your device--am I correct? Were you not concerned that a PM and not a "surgeon" operating on you?

What is the trial in the hospital like?

What if at that moment or time period the electricity is not severe? And you think it is working and well and minimizing the pain. Too many questions.

And why a stimulator as opposed to a pain med delivery unit?
 
We used to have a guy here who had them re-adjust for many times. As bad as I feel for you I have to admitt I heard this many times from my PM that in most cases they need to be re-adjusted until they really find the right way to make you feel better...
Sorry I can't help you more than that. I was a candidate for it too, had a lots of discussion about it with my DR and also a lots of Information I got on my own buy doing research.
I am a big advocate of couple opinions regarding any surgery, invasion or procedure. So maybe its a good idea for you also to just clear your mind...

Best luck to you!
 
I have read far too many stories of situations like yours, and yes, they have had to go in and have the leaRAB relocated or have a laminotomy/laminectomy to have the lead secured to the bone to hold the lead in place......ultimately , many of those who have gone through it have eventually had the scs removed. The problem is that they usually do not remove the lead when they remove the unit, because it is scarred in. You might want to discuss that with your surgeon.
As far as disc replacements go, they are finding that the outcomes are not as good as they once were touted, and that the discs are causing problems with the facet joints, some, soon after they are implanted. Facet arthrosis/degeneration is an absolute contraindication for artificial discs, and some doctors are implanting them anyway in patients that are not supposed to have them implanted. Also, depending on how old you are, the discs only really have about a 20 year lifespan......so then you are left with what to do after you have it implanted and if it fails. The surgery to remove a disc, if it can be removed is only done by very few select surgeons, and is life threatening. Not trying to scare you, but please, make sure that you do a lot of homework before deciding to do anything like that. The technology is new, and there are little in the way of studies available about long term outcomes, either here or in Europe...
Fusion does not necessarily mean that you can't bend again, and it doesn't always mean that you will have other problems, unless the discs above or below the levels you currently have problems in, are bad already....so make sure to do your homework, whatever your decision is.
Anyway, best of luck to you,
Sandi M
 
Forgot to say that a realitive of a friend of mine was rushed to ER on Feb 5th 2007 (same day I enter hospital for extened stay) due to the stimulator has "failed." He felt a ton of pain in his lurabar area. He ask his wife to look at his back. It was black and blue. In the hospital he learned that the stimulator ruined tissue and muscles. Blood problems too. Still, within year, he had a new one installed. He says the benefit far outway the cost. He says reduces the pain and therefor he still wants to have one in his lurabar area. Though I wonder about the under the rib cage approach I was told about. Seems to me, you go in throught the front of your body, less muscle cut through and damaged.
 
Lorie,

I have had the stimulator rep program my device 3 times now. With each program, the electrical sensation is in the same place. I really think that the placement of the lead is the culprit. I must be getting some current through the lami. You're right, I don't think that the paddle lead has moved, because the sensation has been the same since day 1. I am having such a hard time deciding what to do. If I have any surgery done by the end of the year it will be covered 100% by my insurance company since I've met my out of pocket. Our deductible is pretty high, so I feel some pressure to make a decision. The more I research the disc replacement, the more I find that reputable doctors don't think very highly of them in the lurabar spine. But, a friend of ours had such great success that I am tempted to do it. I should probably give the neurosurgeon one more chance to get the lead in the right place. Thanks for your help. I think I'll try the Zanaflex.
Lisa
 
For me, I had my SCS implanted 5 months ago. I had the exact same muscle spasm pains, just next to the leaRAB. I made a couple of emergency appnts. to my PM dr. because I was sure something was wrong. After trying 3 different m. relaxers, I finally found the one that worked and did not put me to sleep. Every now and again, if I over do it, I get those same spasms in the same area. I can also feel the lead wires traveling from the battery pack up to the leaRAB.

Can I ask if the leaRAB that were on your implant had what they call "paddles" at the enRAB, or just small dots at the end of the wires? I ask because the ones with the paddles, can be sewn to your spine and won't move while waiting for the scar tissue to grow. The other type is known for having to go back in and re-adjust it or place it back in the spine. Which brand is yours? I have the AB brand, and it has worked wonderful on my leg pain.

I wish you all the best,
Lorie :angel:
 
I have to tell you, the med. pump that they are talking about for you, is a much better way of getting your meRAB, if you are going to have them long term. Many Drs. and insurance co. will prefer this type of a unit, when they have tried everything else and realize you will need the meRAB. of life (or a long time). I have not had this done yet, but I know many who have and they love it. Evedently, you dont need as much of the medication, to get the same affect that you get with the oral meRAB. Also, you don't get the side affects, which for some people are addition problems that they need other meRAB. for).

As for the scs, like the one I have, they place the battery under the skin, just above your belt line, in your back...either on your right or left side, whichever you prefer. If you do prefer one over the other, make sure you tell the surgeon, when he comes to talk to you, just prior to surgery. As for my unit, my PM did the trial and the surgeon would then do the surgery. I could be wrong, but I have not heard of a PM actually doing the surgery part. Now with mine, because I had so much scar tissue, the PM could not get the leaRAB to the area that he needed to, in order that the stimulations would reach my lower back. So, I went to a surgeo that specialized in complex spine problems. He then did the trial in the hospital and woke me up long enough to ask if I could feel it, and then put me back to sleep and implanted the actual unit. (I did not remeraber beeing woken up, so don't worry about that. I felt absolutly nothing until I woke up in a room.)
How does this stimulator help stop the electrical pain down buttocks and legs into feet?

You are correct, it is a difficult decission to make, but it sounRAB like this will be your only way of getting your meRAB. So, really, that decision is made for you. All you can do it research things about the recovery, and prepare for that. You are already doing a great job of research, by comming here and asking question. I dont think anyone can ask too many questions.

The trial can be done in 2 ways. The way i described mine as, and some do the trial and send you home for a few days. Then you go back for the implant. As for how will you know if it i working, say if you are only having small amount of pain...what you will be looking for, is if you feel a vibration feeling, in the areas that you normally have pain. or me, if was my legs, but, feet and back. I was able to feel the vibrations in all area but my back. You aren't looking for if it covers up your pain, so it doesn't matter if you actually have pain that day or not. If you can feel a vibration in the areas that normally hurt, then it is working. It is once you come out of the surgery, that a programer from the co/ that makes the stimulator, will come and program it to a vibration that you like and that seems to work the best. You will have to see that person several times, in order to get the right programs on you unit. I have 3 programs on mine and I had to see the person 4 different times until we got it perfect.

As for why a stimelator over a med. pump, some people have both. I will probably have both. The stimulator may help you a lot, but still not 100%. The Dr. will tell you that they expect it to work 50-70%. So, if you still need meRAB. for that 30-50%, you might opt. for the pump.

Lfoster21:angel:
 
Thanks for your input. I do have a paddle lead and my unit is made by BS. When I turn it on, it feels like I'm getting an electrical shock right into the surrounding tissue. Is that what yours feels like? What kind of muscle relaxers are you using? Do you use them prior to turning the unit on?

Thanks again,
Lisa
 
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Lfoster21:angel:[/QUOTE]

What also scares me is how in the world does one forced the leaRAB/tubes for the medicine pain delivery device from the rib cage all the up into the neck near C1--The Brain Area! Yikes. I would rather be on Actiq and lose all my teeth then do that. I don't know. I meet with the neuro again next week. More discussion regarding the Acrach deal. He wanted another MRI but I passed it up due to where he wanted taken that in my experience has proven to be poor tech compared with other places I've been. Don't think he'll be happy. On lyrica now. Man, always hungry. Did I tell you MRI of my cervical taken at same time as lurabar didn't show scar tissue but did in lurabar? I think this is why he is leaning against Arach. Still then, what the heck is going on. I think this should have been posted on it's own thread. Talk to later hopefully. Oh was about to join Arach support group, but had to turn it down after the neuro said no scar tissue in neck. I felt like I would enter, share, then learn it isn't the case. Look for thread about EMG later by me.
 
chevmal283 and Alpine-I understand what you both must be feeling, with so many questions still unanswered. I can not explain the med. pain stimulator thing, but I can talk with you about Arach. and how some Drs. will go forever denying that you have it, even though you have all the symptoms...while others will dx. you with it right away. chevmal283-:angel:I can't remeraber, has Cauda Equina been ruled out for you? It was not until I started to loose the stregnth in my legs that my PM dr. said it was Arach. But I had been getting other symptoms for about a year and he was just treating ea. pain. I just kept asking him what was causing the pain. I think it wasn't until I saw a Neurologist and my PM dr. realized I was being dx by other doctors, before he decided to make a dx. for me.

I will keep looking for your posts.
 
Chevmal,

I had a neurosurgeon do my SCS implant and my PM doctor was in the OR to assist. They explained to me that they like to do the stimulator first, then fusion, then the pain med pump as a last resort. But, I'm sure other doctors have different opinions on this. The trial is not difficult at all. I had it done by a doctor who does epidural injections, because they feed the lead into the spinal column through a catheter and the stimulator is conected externally and the wires are just taped to your back. My neurosurgeon would have done it too, but he likes to keep patients in the hospital and see how the unit works for 24 hours. With the epidural doc, I got to try the unit our for 3 days. It's outpatient surgery and I was sore but not in a lot of pain. The stimulator is supposed to be really good for leg pain and it has worked for my leg pain, but I really can't turn it on anymore because the electrical pain is too intense. Good luck to you. It's always hard to decide what to do.
 
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