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Old 03-07-2004, 07:54 PM   #1
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Spinal cord stimulator questions

I have not used the boards in some time but I have been reading articles about SCS. I'm going through my trial now. I hope someone can help me.
I'm in my 7th day of my trial and it has worked great on my leg pain, but it's not helping my back. Let me tell you a little about my self, I have had chronic back pain for almost 3 years and I have tried almost everything out there for pain relief, but nothing has helped. I've had a spinal fusion done L4-L5 and all the other stuff like trigger point, nerve root, I could go on, but nothing has helped. I would like to know if anyone has had the stimulator gradually start working its way up your back? My doctor says that sometimes after a while the pulses will start working its way up my back. If I could get the relief in my back to work as good as the relive in my leg, I could start doing cart-wheels. My pain is say 70% back and 30% left leg and I'm still going for the In-plant next Thursday, I'll take any relief that I can get, but I would like to know if anyone has had the pulses start rising up your back? Thank you for taking the time to read this, and God Bless, Mike

 
Old 03-08-2004, 08:46 AM   #2
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Re: Spinal cord stimulator questions

Hey Mike, The SCS is actually doing exactly what it's designed for, It works best on nerve pain like radiculopothy "leg pain" or neuropathic pain in the extremities.

It's not recomended or desigened for back pain and the pulse working it's way up your spine is hogwash. Sometimes after a while = BS.

Where nerve pain doesn't respond well to opiates, Back pain does respond to opiates in most cases if the doc isn't afraid to prescribe enough to change the quality of your life. If the SCS relieved every bit of leg pain what position would you be in if the doc says this is all we can do, and is opiate phobic and unwilling to treat your back pain?

Having your leg pain relieved may be enough reason to have the implant. But expecting it to manage crushing spine pain isn't realistic or even the the intended use for the SCS. If you didn't have leg pain you wouldn't even be doing a trial for the SCS.

Does your back respond to pain meds and the leg pain did not? Is your doc going to continue to treat the back pain after the implant or do you get sent on your way with your new 30k implant expected to manage all your pain? Perhaps sometime, maybe, down the road he may help you with the back pain if the SCS doesn't?

These are the questions I would ask. If the SCS doesn't help my back pain what are we going to do about it?. It will be much harder to find a PM doc to take over your case once you have an implant. The SCS is a tool, Not a cure all and as long as the doc thinks that way you should be fine. It's when docs think the pump implants or the SCS is implanted, no other method to help you is needed is when you run into trouble. It's just about having realistic expectations from this device.Being fed a spoonfulfull of BS is what would concern me. Like the pulse working it's way up the spine away from the leads.

Good luck, Shore

 
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Old 03-08-2004, 04:37 PM   #3
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Re: Spinal cord stimulator questions

Shore, Thank You For Taking The Time To Respond To My Question. I Have My Doc App Tomorrow And I Will Bring Some Of This Up To Him. I'm Looking For Any Reduction In Pain I Can Get And I Would Like To Stop Taking Pain Meds. I Want My Health Back And I Will Try Anything To Get There. I'm 42 And Still Have A Long Way To Go, Wife And Kids. Thanks Again For The Info. Mike

 
Old 03-09-2004, 12:55 PM   #4
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Angry Re: Spinal cord stimulator questions

Hello everybody I am new to the site but have been in pain for the last three years. I've had sugery a fusion in my neck I still have three bad disk. I'm having a lot of pain in my upper body(arms,hands,shoulders, and neck). Ive been on the strongest pain pills for the last three years. Did pain managerment and had nerve blocks and so on. Well know my pain doctor want to put the neurosimulation in my back. My Doctor said no it would hurt me more then it would help. I really scare because I don't no what is left for them to try beside this. In suggest or solution please respond.

Thanks, Loveangel.

 
Old 03-10-2004, 05:53 AM   #5
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Re: Spinal cord stimulator questions

Hi LoveAngel, You really need to get more opinions even if it means looking for a new PM doc. Two completely conflicting opinions is scarry.

If the doc that disaproved just said I don't think it would help much, that would be one thing, But he's saying it will do damge and that's not an exceptable risk. Sadly things can get worse. If your PM doc wants to implant the SCS to relieve some pain in the extremities that is what it's designed for but it's not going to loosen a neck that's stiff with intractable pain. Perhaps the pump would be a better Idea.

Can you tell us how much relief you are getting from the meds you take, what works the best, how high a dose you have tried and why you stopped titrating at that point. If side effects start to hinder function than yes you reached a point where opiates have reched their max effectiveness.

But if your doc has determined you won't benefit from another med, mixing opiates or trying hgher doses then you may have options left. What specific meds have you tried and what were your reactions to each med.

My problems are all lumbar but the few kinks in my neck that I have had I can't imagine living like that, unable to turn your head etc. Have you tried Robaxin infusions to loosen up your neck and make the opiates more effective. Opiates will only do so much for nerve pain but I wouldn't be comfy with two conflicting opinions.

It's an extremely invasive way to manage pain and just a tool, not a cure all. At least you get to do a trial unless the one doc thinks even a trial will cause problems. Good luck, and there are lots of folks that are wearing the same shoes. ,You did say you have tried the strongest meds , do you mind telling us which meds. You never know what someone means by saying the strongest. If Vicodin is the strongest med you have ever had then there is room to go up in strength and dose.

Welcome and good luck, Shore

 
Old 03-10-2004, 07:38 PM   #6
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Re: Spinal cord stimulator questions

I'm new here so I hope you don't mind. I don't have the SCS yet, but am being considered for it and going through all the red tape balony insurance stuff now. My pm doc did tell me that while the SCS would help with the leg pain I have, it most likely wouldn't do much for my back unless he got really lucky and I got relief sort of like a side thought. Just a quick note to tell you what my pm doc said when I asked if it would get rid of the back pain to.

Thanks for all the posts. I'm learning a lot and will have quite a list of questions for doc on Monday.

 
Old 03-11-2004, 09:39 PM   #7
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Re: Spinal cord stimulator questions

I would like to thank everyone for sharing thier knowledge and very good questions for me to ask my doctor. I went back to my doc. office and had my trial stimulator removed. While I was there I started talking with the two other trial patients that I had met the day I had my trial installed. OK now try to stay with me, I have a habit of running things together. One man had a test stimulator for his back and left arm and he said that the test stim. helped his back but not his arm. I asked him to give me a % percentage of pain relief, he told me it was about 25 to 35% and said that any improvement is worth the effort. The second guy has had chronic lower back and leg pain for 17 years, he tells me the trial stim has helped his lower back but doesn't go down his legs, again I ask for a percentage and I get about the same answer about 20 to 30% and he is also having the permanent stim. installed, and as for my self I have received about 25 to 35% reduction of my pain. All things considered I'm going to have the permanent stim. installed. The test stim. that I used was a single wire with 4 transmitters and the permanent one I will get will have 8 transmitters on it and maybe I'll get more relief. Like you have said this is not a cure, it is only a tool to help with the pain. I will never stop looking for ways to reduce the pain. Thanks for your time, Mike

 
Old 03-13-2004, 03:15 PM   #8
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Re: Spinal cord stimulator questions

Quote:
Originally Posted by MNPAIN
I have not used the boards in some time but I have been reading articles about SCS. I'm going through my trial now. I hope someone can help me.
I'm in my 7th day of my trial and it has worked great on my leg pain, but it's not helping my back. Let me tell you a little about my self, I have had chronic back pain for almost 3 years and I have tried almost everything out there for pain relief, but nothing has helped. I've had a spinal fusion done L4-L5 and all the other stuff like trigger point, nerve root, I could go on, but nothing has helped. I would like to know if anyone has had the stimulator gradually start working its way up your back? My doctor says that sometimes after a while the pulses will start working its way up my back. If I could get the relief in my back to work as good as the relive in my leg, I could start doing cart-wheels. My pain is say 70% back and 30% left leg and I'm still going for the In-plant next Thursday, I'll take any relief that I can get, but I would like to know if anyone has had the pulses start rising up your back? Thank you for taking the time to read this, and God Bless, Mike
OMG! You may be just who I am looking for! I am having a stimulator put in Tuesday and would LOVE to talk to you about it. I have never used these boards before and discovered it today! Please respond!!

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Old 03-13-2004, 05:32 PM   #9
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Re: Spinal cord stimulator questions

Quote:
Originally Posted by jhardt2003
OMG! You may be just who I am looking for! I am having a stimulator put in Tuesday and would LOVE to talk to you about it. I have never used these boards before and discovered it today! Please respond!!
I'm just a newbie myself, so I don't know the innís and out's of the boards. I have had the test stimulator in for about a week and now I have had it out for a week and I can't wait until this Monday when I will get my permanent unit with the 8 RF tabs. I will be glad to try and answer any questions you may have. I was hoping that someone might tell me the difference between the 4 tab and the 8 tab unit. Example.Ē I had the 4 tab model and just changed to the 8 tab model, and explain the difference.Ē Take care, Mike

 
Old 03-14-2004, 10:14 PM   #10
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Re: Spinal cord stimulator questions

Quote:
Originally Posted by MNPAIN
I'm just a newbie myself, so I don't know the innís and out's of the boards. I have had the test stimulator in for about a week and now I have had it out for a week and I can't wait until this Monday when I will get my permanent unit with the 8 RF tabs. I will be glad to try and answer any questions you may have. I was hoping that someone might tell me the difference between the 4 tab and the 8 tab unit. Example.Ē I had the 4 tab model and just changed to the 8 tab model, and explain the difference.Ē Take care, Mike
Hey Mike,

So I am taking it your trial was a success then? What was your rating (1-10) before the trial and during the trial? Myself, I have no idea of what the difference between the 4 tab and 8 tab would be. Doesn't seem to be many who've had this done that post about it. I have so many questions myself that I'm having 2nd, 3th, and even 4th thoughts about it now. I've also found myself questioning the meds I'm on and after reading some of the posts on here wonder if maybe I'm just nuts instead? At least I finally figured out why my insurance keeps turning the trial down, one of the docs put in his report that I was addicted to pain meds and need rehab, not pain management, his opinion is it's all in my head.

Anyway, good luck on your permanet placement! I wish you the best and hope that you may get some relief for the back pain as well.

Take care!

 
Old 03-16-2004, 05:40 PM   #11
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Re: Spinal cord stimulator questions

Hi there Mr. /Mrs. Backsahurtin, I had my new stimulator installed on Monday and I came home today. The doctors told me to take it easy for the first 2-3 weeks. There are different types of stimulators for different needs. The type I used in my trial was the basic unit that has a single lead with 4 electrodes, and has 50 possisable settings, and with that model I received great pain relief in my leg. My pain is 70% back and 30% leg, the model I have now has a single lead with 8 electrodes and it has over 6,000 settings. The doctor has set me up with 10 settings for now and I will have to wait 2 weeks before I can start using the other 5,990 settings. Even if I only get the 30% relief I had before Iíll take it, but you know I want more and more and more, until I get complete relief, I know that will not happen, but I can try. Now about Mr. or Mrs. B. I have had thoughts myself, like is this just in my head? I think everyone in our condition has had these thoughts. You know yourself better then anyone and or if you are having problems, I think you should talk to a professional, if fact I had to talk to someone before my doctor would consider me as a canadit. I have talked to a few people and they helped me big time. I hope this helps you. I have read a lot of these pain boards and if I can help just 1 person Iíll be happy. The one thing I keep thinking about is if 1 of your doctors think you have a problem with meds, I would think the stimulator would be the best choice since the stimulator is drug free?













Quote:
Originally Posted by Backsahurtin
Hey Mike,

So I am taking it your trial was a success then? What was your rating (1-10) before the trial and during the trial? Myself, I have no idea of what the difference between the 4 tab and 8 tab would be. Doesn't seem to be many who've had this done that post about it. I have so many questions myself that I'm having 2nd, 3th, and even 4th thoughts about it now. I've also found myself questioning the meds I'm on and after reading some of the posts on here wonder if maybe I'm just nuts instead? At least I finally figured out why my insurance keeps turning the trial down, one of the docs put in his report that I was addicted to pain meds and need rehab, not pain management, his opinion is it's all in my head.

Anyway, good luck on your permanet placement! I wish you the best and hope that you may get some relief for the back pain as well.

Take care!

 
Old 03-16-2004, 09:32 PM   #12
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Re: Spinal cord stimulator questions

Quote:
Originally Posted by MNPAIN
Hi there Mr. /Mrs. Backsahurtin, I had my new stimulator installed on Monday and I came home today. The doctors told me to take it easy for the first 2-3 weeks. There are different types of stimulators for different needs. The type I used in my trial was the basic unit that has a single lead with 4 electrodes, and has 50 possisable settings, and with that model I received great pain relief in my leg. My pain is 70% back and 30% leg, the model I have now has a single lead with 8 electrodes and it has over 6,000 settings. The doctor has set me up with 10 settings for now and I will have to wait 2 weeks before I can start using the other 5,990 settings. Even if I only get the 30% relief I had before Iíll take it, but you know I want more and more and more, until I get complete relief, I know that will not happen, but I can try. Now about Mr. or Mrs. B. I have had thoughts myself, like is this just in my head? I think everyone in our condition has had these thoughts. You know yourself better then anyone and or if you are having problems, I think you should talk to a professional, if fact I had to talk to someone before my doctor would consider me as a canadit. I have talked to a few people and they helped me big time. I hope this helps you. I have read a lot of these pain boards and if I can help just 1 person Iíll be happy. The one thing I keep thinking about is if 1 of your doctors think you have a problem with meds, I would think the stimulator would be the best choice since the stimulator is drug free?
lol It's Mrs. B, actually. Sorry for the confusion on my gender. Didn't mean to make anyone wonder.

I'm so happy to hear that you are doing well with your SCS. And that you were able to find out the difference in the 4 and the 8 electrodes. 30% relief? That's good, right? I understand fully that once you have something, you want more, especially if it's a good thing.

Thank you for the advice. I really do appreciate it. I was extremely upset by what that doctor had said. He didn't say it to me, instead he'd wrote a letter to my family doctor who didn't say anything to me about it. It's been well over a year since I last saw that doctor so evidentally my family doctor didn't agree with him since he never recommended that I go into rehab. I am now going to a new family doctor. The other one I had just didn't explain anything to me and wouldn't answer any of my questions. Nor did he seem interested in doing any type of followup for me. My new doctor seems very nice and very interested in working with my pm doc as a team. She's also having me do a work assessment because she feels at this time, it wouldn't do me any good to try to work no matter how badly I want to. She also suggested counciling for me since I have been depressed and also wants to test me for Adult ADD.

I wish you continued success with the SCS and that one day you will have 100% relief! I'll keep you in my thoughts and prayers. Again, thank you very much for your kind words.


Take care!
Mrs. B. lol

 
Old 03-17-2004, 02:42 PM   #13
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Re: Spinal cord stimulator questions

Good for you, I think the best way to manage chronic pain is to use a team. I wish I had a team of doctors helping me. To have a PM.doctor, PT. professional, and physicist all working together on one goal, eliminating or reducing my pain. WOW If I could have everyone working on the same page, MY PAGE, I know I would be further along.
My problem, besides my back, has been that when I would suggest trying a different approach then what they were doing. I.e. My friend went to Johns Hopkins and they tried this.They would get their huge ego hurt. Two doctors have said that they would no longer see me because they didnít like to be second guessed. Talk about a God complex. The best advice I can give any of you is to never give up, and use these boards as much as possible. I think had I used this board earlier, I would have had the SCS before the fusion. The SCS is reversible and the fusion is not. I canít wait to start PT, but Iíve been told I will have to wait 3-4 weeks. As always thanks for taking the time to read my post and hang in there. Mike




Quote:
Originally Posted by Backsahurtin
lol It's Mrs. B, actually. Sorry for the confusion on my gender. Didn't mean to make anyone wonder.

I'm so happy to hear that you are doing well with your SCS. And that you were able to find out the difference in the 4 and the 8 electrodes. 30% relief? That's good, right? I understand fully that once you have something, you want more, especially if it's a good thing.

Thank you for the advice. I really do appreciate it. I was extremely upset by what that doctor had said. He didn't say it to me, instead he'd wrote a letter to my family doctor who didn't say anything to me about it. It's been well over a year since I last saw that doctor so evidentally my family doctor didn't agree with him since he never recommended that I go into rehab. I am now going to a new family doctor. The other one I had just didn't explain anything to me and wouldn't answer any of my questions. Nor did he seem interested in doing any type of followup for me. My new doctor seems very nice and very interested in working with my pm doc as a team. She's also having me do a work assessment because she feels at this time, it wouldn't do me any good to try to work no matter how badly I want to. She also suggested counciling for me since I have been depressed and also wants to test me for Adult ADD.

I wish you continued success with the SCS and that one day you will have 100% relief! I'll keep you in my thoughts and prayers. Again, thank you very much for your kind words.


Take care!
Mrs. B. lol

 
Old 03-17-2004, 03:51 PM   #14
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Re: Spinal cord stimulator questions

Quote:
Originally Posted by MNPAIN
Good for you, I think the best way to manage chronic pain is to use a team. I wish I had a team of doctors helping me. To have a PM.doctor, PT. professional, and physicist all working together on one goal, eliminating or reducing my pain. WOW If I could have everyone working on the same page, MY PAGE, I know I would be further along.
My problem, besides my back, has been that when I would suggest trying a different approach then what they were doing. I.e. My friend went to Johns Hopkins and they tried this.They would get their huge ego hurt. Two doctors have said that they would no longer see me because they didnít like to be second guessed. Talk about a God complex. The best advice I can give any of you is to never give up, and use these boards as much as possible. I think had I used this board earlier, I would have had the SCS before the fusion. The SCS is reversible and the fusion is not. I canít wait to start PT, but Iíve been told I will have to wait 3-4 weeks. As always thanks for taking the time to read my post and hang in there. Mike
Hi Mike,

How ya feeling? Still getting that 30%? I sure to hope so!

The team was just assembled Monday, so I'm being a bit cautious yet on how it's going to work out. I'm hoping well, but ya never know. I've only got the two docs at the moment, although most likely will be adding a coucilor in there soon. Really need to get some of my issues worked out. I'm either depressed or so angry I could spit nails. I used to be pretty laid back and very rarely said anything unkind, but it's like I have this new personality taking over and she's very nasty! I don't like her much at all so I think in the morning I'll be calling around for an appointment to get that under control as well.

Why are doctors like that? You'd think they would try out suggestions that have worked for other people, but nooooo, they throw their hands in the air and say who died and left you in charge. Can't believe their attitudes sometimes. Yes, they do have the medical degrees, but we're the ones in pain and know our bodies the best, right?


I'm glad the SCS option was mentioned before anything else. But on the last denial by the insurance they actually referred to having a fusion done first, EIK! Don't want to even think about that quite yet. If I can get even 20% relief at this point, I'd take it and run (if that were possible, lol).

Take care and hope you continue to improve!

Mrs. B

 
Old 03-19-2004, 07:33 PM   #15
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Re: Spinal cord stimulator questions

Hey guys,

Was just wondering how y'all are doing with your SCS's? Helping, not helping? I got denied for mine...again. This makes the 3rd time. The reason, they want me to try other options first, they also stated since I haven't had a fusion as yet, maybe I should try that. That's something I'm trying to avoid for as long as I can. It's very stressful dealing with this insurance company. They made me jump through so many hoops before approving my hystercotomy (sp) back in '96 that my doc finally got on the phone with their doc and they had a screaming match. Two hours later I got a call telling me it was approved without having to get a 3rd opinion. Took 12 months from the first request to approval so I'm going to keep fighting for this as much as I did for the other.

Hope you guys are feeling at least a little better! Have been wondering about you and keeping you in my prayers.

Ang

 
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