Hi guys!

Some questions on spinal cord stimulators for those who know.

My pain doctor feels it's time to do one and he is batting his baby blues at me trying to convince me to do it. My one back doctor agrees. However, my two other back doctors are leery of it, the other pain doctor says "don't do it!" and my new neurologist says "don't do it!"

I asked why not and they said the leads migrate, the thing works two months then quits, infections can set in, and scar tissue can form in the spine around it or it just doesn't work. But mostly because they feel my nerve IS healing and I am regaining strength in my leg and foot but my pain keeps getting worse and worse. It's been 19 months since surgery and my pain is increasing and the meds don't help much. I'm in level 8-10 pain daily. And my leg is giving out to hte point I can't walk.

They've ruled out further back surgery.

I told the doctor the bad things I was told, who does the SCS and he said, "Did they show you documentation of this?" I said no, and he siad that it upset him t hat they are being so negative about the SCS.

I told him, look, I am hearing bad things about this thing, and if you let me talk to some of your patients about it, then I'll consider it, AFTER I've researched the hell out of this thing.

I already have scar tissue formed around the nerve from one surgery and the thought of having this lead thingy inserted in the spinal column freaks me out. And tat big box thing put in my butt?? That looks horrifically big to be inserted! Wouldn't it form scar tissue all around it and adhere to your spinal canal? Wouldn't that pinch off more nerves? I have an unusually large spinal canal.

I saw him and I went into level 9 pain in his waiting room, practically screaming in pain and laid in his office for 1.5 hours while the percocet kicked in and I think they watched me on a camera because as soon as I felt able to breath and talk, he came in and said, "Look, you are in extreme pain. I've seen you 3 times now and it's getting worse. your nerve is damaged. Your nerve is sick. It's probably going to get worse and the pain will continue to increase and do like it's doing right now, where it hits out of the blue and hits hard. The meds aren't touching your pain. It's time to do this."

I know I need to search on here under SCS, but do you know, does it form scar tissue in the spine around the SCS? And I have foot drop and a weak leg, will it help the foot drop at all? He said one lady just like me just had one put in and she has foot drop and no longer needs her cane. She's learning to walk again with PT. I've heard of this pain causing the leg weakness, but I'm confused, because it's also the nerve damage.

But my other doctors are saying don't do it, he is pressuring me to do it, and the meds aren't working. I just started Cymbalta and am hoping that will work. Another doctor wants me on methadone, to give the nerve time to heal, and not do the SCS. Most of the doctors are against ANY narcotics at all. I feel like I've been left in a living hell in level 10 pain and am being forced to make some huge decisions, either methadone or a SCS.

Hi, I never heard of the SCS. But I do know of methadone and morphone, after awhile they stop working on nerve pain and the dose has to be increased over time. I am now off of those meds and feel better. However I just reinjured my back getting out of bed "Pinched nerve" and they wanted to put me on morphine again and I told them no. So the doc put me on vicodine and valium until I get another epidoral to hold me over until I see the surgeon again. I may be of no help to you but for whats it's worth your doing the right thing by doing reseach and asking questions.

Good Luck and lets us know,
Joe

Hi, I never heard of the SCS. But I do know of methadone and morphone, after awhile they stop working on nerve pain and the dose has to be increased over time. I am now off of those meds and feel better. However I just reinjured my back getting out of bed "Pinched nerve" and they wanted to put me on morphine again and I told them no. So the doc put me on vicodine and valium until I get another epidoral to hold me over until I see the surgeon again. I may be of no help to you but for whats it's worth your doing the right thing by doing reseach and asking questions.

Good Luck and lets us know,
Joe

Hi, I never heard of the SCS. But I do know of methadone and morphone, after awhile they stop working on nerve pain and the dose has to be increased over time. I am now off of those meds and feel better. However I just reinjured my back getting out of bed "Pinched nerve" and they wanted to put me on morphine again and I told them no. So the doc put me on vicodine and valium until I get another epidoral to hold me over until I see the surgeon again. I may be of no help to you but for whats it's worth your doing the right thing by doing reseach and asking questions.

Good Luck and lets us know,
Joe

Right. I've been on percocet for 2 years and it only barely takes the edge off the pain. Still, it's better than nothing. If it's level 10 knife stabs, taking a percocet and going to level 8 pain is better!

Gabapentin helps, but I can only tolerate 300 mg 4x a day, as it fries my brain. I have not tried methadone, but the one pain doctor said it was t he drug of choice to treat nerve pain. I hope the cymbalta works. I've only been taking it two days and so far, feel no difference in the pain, but at least am not reacting to it! I've heard that the narcotics just don't tend to touch nerve pain. And then you can get all spaced out, etc. which is why the pain doctor is pushing the spinal cord stimulator. Which would be great, if only I heard better odds that it works and stays working.

On the light side...the pain doctor who wants to do the spinal cord stimulator said part of the reason they make you undergo a consult with a psychologist first to see if you can handle it and understand the pros and cons and what it can and cannot do is that some people actually believe they'll be ...

able to talk to aliens or pick up radio signals once they get it put in!

He said you wouldn't believe the things people think! What a hoot!

Yes, I'm going to get this thing inserted in my spine and pick up signals from Mars!

Hi,

I think that it is great that you are researching the SCS. I don't know anything about a SCS. It's a real tough decision between the two. I have known people that take methadone that their bodies become dependent on the drug.

My last surgeon told me that all surgery would cause scar tissue build up. I had a foramonomity (sp) on 3-04. I just recovered and was back to work and fell on the ice and injured my back. I was told after the MRI was done in Feb. of 05 that I had scar tissue build up around the area the surgery was. I tried the shots in the L5-S1 levels in my back, but they didn't help me. After a couple of months of the shots my pain management doctor told me that I was not going to feel better unless I had a spinal fusion on l5-s1. I said to him "why would I opt for a fusion if I already have scar tissue from the last surgery". I decided to try PT. I went for 9 months with little to no relief and ended up having the surgery done. I feel much better now, but I am a little nervous with the rods and screws in my back. If they fail, (hopefully they won't), then it is another operation, so I know how you feel.

I guess what I am trying to say is that it is great that you are doing research on the SCS. I think I would take the opinion of the two doctors that said no rather then the one that said yes. if you are still unsure, is it possible for you to get a 4th opinion? It may make you feel better to have another opinion w/a spine specialist. If the percocets help, why won't they prescribe you those?

Hang in there, pain really stinks, hope it gets better for you.

Judy

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Have you considered any other means of back pain relief like cortisteroid in jections every six months that completely eliminates pain till the next injection

Yes, I had one lower lumbar block in 2004 but it increased the pain and then I lost the use of my foot four days later. they say the needle didn't cause it but I think it did. so I've refused all injections except cortisone in the tailbone to relieve the pain there so i can sit easier.

I am now considering shots again, and told the pain doctor that - he specializes in that - and he said he'd do cortisone into my sacroiliacs because those are bothering me, but he said he suspected it's the sciatic nerve beneath. He's the one who wants to do the SCS.

I expected him to do shots like he wanted to do before but now he's pushing the spinal cord stimulator because my pain is getting worse, and it's getting harder and harder to walk.

I do get an EMG this Wednesday with a neurologist and we'll go from there. He said I may need more surgery.

IN the meantime, the cymbalta is helping the pain at night but I'm nauseated from it.

I"m not going to jump into anything until I make the right decision. They know i need the percocet but I think they are all saying it's not helping my pain enough and I need to do something - make a decision - but they'll keep me on percocet until I do make a decision.

I"ve delayed because my father is dying of cancer and I can't focus on me.

But I can't take this pain any longer either. I know that surgery causes scar tissue, so we don't want any more of that. They said if they remove the scar tissue from the nerve it'll just grow back worse.

But a SCS surely causes scar tissue too. It has too, as it's a foreign body, right?

Hi, I never heard of the SCS. But I do know of methadone and morphone, after awhile they stop working on nerve pain and the dose has to be increased over time. I am now off of those meds and feel better. However I just reinjured my back getting out of bed "Pinched nerve" and they wanted to put me on morphine again and I told them no. So the doc put me on vicodine and valium until I get another epidoral to hold me over until I see the surgeon again. I may be of no help to you but for whats it's worth your doing the right thing by doing reseach and asking questions.

Good Luck and lets us know,
Joe


You might want to go back and delete two of your posts, three of the are identical :)

Greetings!
I am new to posting on any board, but because of constant pain I wanted to see if there was something that would be helpful. While looking, I found Healthboards and I am most happy already.

I read your question about the SCS and wanted to tell you that I have had one in my back for about 10 years. Yes, I have had some problems, but when it is working properly it is better than all of the medicine and tears before it.
I could tell you of days when my husband had to lift one knee so I could try to pull up the other one just to get up stairs and to bed. Since then we have had to move into a house with just one floor, but I can answer some of your questions according to my personal experiences. That is what I did too before I actually agree to do it much to the disapproval of my daughters, etc.

Presently I am using the Methadone and waiting for the doctor to tell me if he is going to go ahead and implant another one (different kind with more programmable options and a rechargable generator.)

I will look for your post later.

Mickrox

Hi,
I do not have one, but my doc considered me having one put in with my last surgery. He decided not to, since I have enough complications already. According to him there are to many problems with them and I didn't need any more than I already have. Don't let any doc pressure you into getting or not getting it, you need to be comfortable with the final decision, after all your the one living with it. Good luck with whatever you decide.

Carol

I know several people who have the scs and love them but I know of far more who have them and have had nothing but problem after problem after problem, sometimes requiring having to go to the operating room to have the leads moved. I believe there are more problems with them than satisfied customers. I have the morphine pump and have had it for 3 years without any problems at all. Would your dr. consider the pump rather than the stimulator? Also, if you are taking percoset without much relief, why hasn't he tried you on one of the long acting meds like oxycontin or mscontin, kadian, etc? It seems to me that going from percs to the scs is quite a leap when there are so many other meds out there to try, such as the fentanyl patch.

Just a few thoughts that you might want to run by your doctor.

Carol

I had a scs put in two weeks ago today. Mine is from a company called Advanced Bionics. This company seems to have the smallest "pack" and the longest battery life.

After I got over a spinal headache and the issues that I had due to the position I was in during my surgery I am doing awesome. I am pain-free for the first time in four years. I have had two previous surgeries on my lower-back, a L5-S1 fusion and another to clean up some of the scar tissue and bone.

While there are risks of having a scs... infection, scar tissue, movement of leads...to me the benefits far outweigh the risks. I feel that having the right surgeon helps. I am fortunate enough to live in Northern Ohio and have the Cleveland Clinic right in my backyard. The Clinic has the largest pain-management facility in the nation and has many world-renowned docs.

If you are in the severe pain you say you are then I would definately go for the SCS. Obviously going through life the way you are is not an option eitehr! What's the worst that could happen??? It may not work for you? At least you can say you tried all of the available options.

Now the only things I have to face are the withdrawal from my percocet I have been taking for four years and the battery replacement every 5-10 years. My doc is very helpful and wants to make sure that I don't go through horrible withdrawal and is willing to work with me on the process.

I wish you luck! Hopefully my scs keeps up the good work...I am so sick of feeling like crap all of the time. I am only 26 and should be out enjoying myself!!!

Thanks for your posts!

I started cymbalta and it has taken away a lot of the pain. I am now seeing a physiatrist (spelling?) who did an EMG and it said it showed nerve damage that has healed. He said I have chronic pain probably. But he also noted my pelvis is one inch higher on the one side and said that once I do PT to get that sacroiliac back in alignment, my pain may go away, as it could be pinching a nerve. None of the other doctors noted that but he did. Now I can tell that it IS my sacroiliac at this point.

Now that the cymbalta has taken away so much of hte pain, I am practicing walking on my bad foot and not leaning to the left so that pelvis goes back.

I will keep the SCS in mind, but hopefully we are on the right track now. I am so glad I found the cymbalta! I do still have to take gabapentin, or the pain starts back up. I've been able to stop all percocet - cold turkey - isn't that fun!

I too have heard from my doctors that the SCS causes more problems than it works. So I leave it as a very last resort. My doctor wrote a prescription for methadone, but luckily I didn't have to take it.

I hope this chronic pain doesn't last forever. But at least I've gone from an 8/10 to a 2/3.