Spinal Cord Stimulator

[nanjo]

Hello Everyone

I have been trying to figure out this posting/threading, etc. so I hope someone reads this.

Over the years I have had many, many injections in the lumbar region of my back (facet, epidurals, priformial, SI Joint, etc.) and really none of them have helped over a week or so. I went to a new doctor in a Pain Management Center in Paducah, KY and I was impressed with him and the center (the center is located in a very good hospital (Lourdes). Anyway, he thinks I really need the "spinal cord stimulator" since nothing else has helped. I have even been to a surgeon who did a diskogram and he said it came out with "soft results" which he said he wouldn't have back surgery for anything unless the pain was so unbearable that I thought I would die from it (and he is a surgeon )

So, I am now going through the process of getting a new MRI and also a psychological. My insurance won't consider any procedure like this without seeing a psychologist.

Does anyone out there have one of this little babies (spinal cord stimulator)? I would like to know how they are doing with it.

Thanks

Nanjo

[Fancylady]

Yes, I have had a Spinal Cord Stimulator and I hated it. I only know of two on these forums that ever left one in. And I have read a lot about it. I too had so much pain and four back surgeries. Usually they don't encourage a Stimulator until you have had more than one surgery. It does involue two surgeries to have one placed in you. First after much testing they put a trial one in. It is left in a period of few days and if you feel much better they place the one inside you. I waited 7 months for mine and had a good attitude that it would work for me. After the placement I had a little bleeding so they only left it in two days. I told them I thought I was feeling better only it wasn't in me long enough that I had started working at anything.

Next I was to get the second surgery for the inplant. It was so different! The thing hurt and shocked me, and throwed my leg forward. It drove me nuts. i could be talking on the phone standing, sit down and it was turned to high.

Cutting this short, they had told me they would adjust mine every so often. They come one time in a year, so right there I knew they weren't living up to what they said they would do. Idon't know what kind your talking about getting but mine cost altogether $73,000. and wasn't worth nothing. I'm not saying it won't work for you, just warning you they aren't all a miracle worker that you would want it to be. Mine felt like a electric fence charger was on me, shocking me.

My Ortho Dr. took mine out about one month ago. I was begging him to. He didn't put it in mostly thats done by Neuro doc's. The Ortho doc said It only works with some people. I wasn't one of them.

Another thing, as you have it in you awhile, they take longer and longer to charge up if they are on much. I got to the place I had to sit and charge it up two nights in a row for about 4 hours each. Now that was boring too.

All I'm telling you is if you really want one ask plenty of questions. make sure they will do follow up appointments, cause you will need them along. There is a lot of adjustments on the metronic one I had. I had the most expensive and biggest they use, so don't go by that. Mine had a 9 year before replacement and that means another surgery too. Some only last 3 to 5 years. All these things are important to find out. Good luck!
BC

[nanjo]

Thank you for writing me! I haven't heard anything from anyone about how they are for most people other than the info you get on the internet. The doctor I am going to says that I have tried everything so I might give this a shot as long as the insurance pays for it..

He said I was to young (56) to be on a medication pump plus I would have to travel about 1 1/2 hours one way to see him for the medication. I really don't know what to do because I have had this pain since 1999 and no one has been able to treat it. That is why I am thinking about the spinal cord stimulator.

I will ask around a lot more. Maybe some other people will give me a reply so I can evaluate.

Thanks again!

nanjo

[ryonka]

I have been in chronic pain for such a long time I can't even remember what it's like not to be in pain.

The current neurosurgeon recommended I get a spinal cord stimulator. He said my pain people would put it in for a test run & then he would surgically insert it.

I spoke to my neuropsychologist at the pain clinic about it. He said since the TENS unit did not work for me, more than likely the spinal cord stimulator wouldn't work, either. He said some people are just too sensitive/can't tolerate the electrical stimulation.

I was determined to get the stimulator so I gave the TENS one more try. I just can't do it! I even had them give me the pads that are extra thick for sensitive people & that still didn't work.

Oh, and the neuropsych said too that when it's put in temporarily, they ask you what percent is the pain decreased by. It has to be at least 50% or else they will not implant it permanently.

It's so hard to turn down something when we're all trying to feel at least a little bit better.

[suede]

Hi,
I started to post to you this morning and didn't have time, I'm happy to see though that Billie caught up with your thread as she is one that I met because of the SCS and a very dear person to my heart.
I had mine implanted last yr. after 6 yrs of living in pain that no meds would touch, I have many problems through out my spine along with other issues, the SCS implant was for the permenant damage done to my S1 nerve, I have had all the ESI Inj. I have had 2 discograms done and even had nucleoplasty, as said many meds and the list goes on.
Well the trial went pretty good as we're told with the trial it moves around so much that it's hard to really get a good idea, I did get enough relief that I truly believed I would benifit from the implant, well it was a big failure my leads keep falling and even when they weren't I could never get the coverage I needed, it darn near killed me emotionaly when it failed and I ended up having three surgeries in 4 months in both inscions and finally having it removed.
Now after more then 50,000 in bills I am having problems and much pain from scar tissue.
I have to say I also had problems when the SCS was implanted that the drs and tjhe reps refused to believe I would get these like electrical shocks that would take me to my knees in pain screaming the only way I can think to describe it is kind of what you imagine it would feel like if some one held a cattle prod to you and wouldn't stop, it even happened that I couldn't get the darn thing to shut off when this was happening and well it was H***.
I don't like being pesimistic about this but I want to be hinest, I talked to a lot of pople and did my research and can only say that onle one person was positive about it before I had mine done but I was so desperate I had to find out for myself, oh and the person that did tell me good things has since had problems and has not been getting relief from theirs.
Please continue to research and ask lots of questions and most important make sure you have a dr you trust and will be there for you when you need them and that you have reps from the company you can get hold off and count on.
Also ask to speak to others that your your dr has done implants on.
I wish you the best of luck and please keep us informed as to how it goes for you.
Linda

[Fancylady]

I think you will find that most back patients don't get out of pain. I not only had the stimulator but also I have had 6 back surgeries since 1991. They have all been serious espacilly my last one. I tend to fill up with scar tissue and it does as much damage as anything else for it grows all over my nerves and don't function right. I just reach the point have to have it taken out again. I'm a little over 1 month post op and I'm not pain free.

There is no easy answer here, you will most likely follow your heart as the rest of us do. I would like to think I will never let, them operate on me again, but when I am in severe pain I will go back to the DR. in time.
Another bad thing about a stimulator is you can't have anymore MRI's once one is put in place. That's about the first thing most Dr's want to do also.
BC

[DUTCH45]

First of all please remember most of the people on this board have failed back surgeries and/or procedures. My experience with the scs is very positive. My understanding of the scs is that it is only effective for nerve pain.
I still have pain in my lower back, but for all practical purposes the sharp, burning pain in my butt and the back of my thighs is gone. I had the scs implanted April 2005. I usually turn it on in the evening for a couple of hours and the residual effect lasts well into the following day. The effects of the scs when it is turned on is very positional, so I just lay down on my bed and read or watch TV. I am very happy I consented to this devise. Now if only something besides meds would help with the lower back.

[nanjo]

I am so thankful to see at least one positive reply. Everyone has been so negative. My main problem is in the right buttock and travels down my right leg. I hate that kind of pain...riding in a car is unbearable, sitting is unbearable. I play the piano at church and I just have to grin and bear it and then sitting through the service is terrible. If this SCS just stops that pain, I will be WONDERFUL!!!!

Thank you again for writing.

Nanjo

[DUTCH45]

Please don't get your hopes up too high. As some posters have stated their less than good results, you must be honest during the trial period and then understand this will not put you back to 0 pain. If you are currently at an 8 a realistic outcome will be a 4 on the pain scale. Many people are looking for unrealistic results and then sadly they are disappointed. That said, let me say I still spend 16 to 18 hours in bed! The pain is bad, but at least most of the time it is bearable. Thanks to the scs the 6 hours or so in the mornings after I get up I have some semblance of a life. Good luck with your trial.

[janie]

I would suggest that, after my own experience, and "seeing" that of others who post on this board (and others), that perhaps it is the "brand" of neurostimulator and/or the experience of the surgeon (doing the implant) that plays into the success/failure rate we are seeing.

Generally, I have seen less than good results from those getting medtronics implants, and this includes "after implantation" support/adjustments.

The ANS seems to get better results (no, this is not a formal study). One can always go for the trial procedure and see how it goes. You are the decision maker. If you don't realize enough of a pain/nerve symptom reduction, then it obviously isn't for you. Also, it is best at controlling symptoms of nerve pain (very good) and you may still require some level of opiod to deal with mechanical pain, etc. Going in thinking you will stop all meds, especially if you have more than one source of pain/co-existing conditions, isn't realistic.

I think it is all about expectations. I had mine for two years. I did experience great relief of nerve/sympathetic overlay pain/symptoms (from shoulders down to fingertips, both arms), but, after lead migration, found myself needing weekly/monthly adjustments to compensate for the lost lead coverage (had dual leads); this became quite frustrating, as I tended to blame myself (for having done something wrong or outside the restrictions).

But, the benefit of the SCS outweighed the hassle of needing so many adjustments. Finally, the SCS was removed due to a need for a spinal surgery. My experience with the SCS, I think was premature, because the cause of my pain/nerve symptoms were not adequately diagnosed.

I did experience the intermittent "shocking" that both fancylady and suede experienced but this developed after the leads had migrated and I developed some kind of "reaction" to the implant/leads, as I had pain/swelling at the incision site, and ipg site (up until it was removed two years later). Both "resolved" once the implant was removed, although, I still have numbness/pain/hypersensitivity at the upper incision level (3 inch scar at T2/3).

I do think that surgeon experience played into my own success/failure, although, lead migration and pain at the incision site is a possible side effect of this procedure. Anyone considering this treatment should be fully informed of possible side effects and be able to use the remote, including having a knowledge of it controls in adjusting intensity, amplitude, etc. especially if getting help/adjustments from the doc isn't convenient.

Here is a really good site (ANS) that has information about treating pain/nerve symptoms, and an heirarchy of treatment options from less aggressive to very aggressive treatment modalities:
http://www.ans-medical.com/patient/t...tmentsteps.cfm

http://www.ans-medical.com/patient/b...fscs/index.cfm

I personally did not find that there was any relationship from what a TENS unit could do or its affect on my symptoms, to what the SCS did.

I am not sure that I would discourage anyone from entertaining neuromodulation because they do not find benefit with a TENS unit.

The TENS unit is only getting at sensory nerves through skin/muscles, etc. Neuromodulation targets the nerve fibres directly and replaces the pain with a different sensation, although, admittedly a much more invasive procedure.

The "issue" is whether this "new" sensation is more tolerable than severe pain/nerve symptoms...

Best of luck to all...