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Old 12-09-2012, 07:02 PM   #1
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neurostimulator

I'm new to this web site and sorry if I flub. Am not too familiar with tags and threads. I've been searching for information on my situation but with very little success. My pain management doctor is recommending a neurostimulator for chronic back spasms in the thoracic (mid to lower area) as a result of a sport injury some years ago. I've been through chiropractic care, epidurals, steroid injections, physical therapy, messages, and drug intervention (hydrocodone). I'd like to get off the drugs. The condition has gotten worse over the last 6 years. Do you know anyone who received a neurostimulator (ANS - St. Jude) for back spasms? It sounds like most of you have greater problems than mine but perhaps no less the pain. I would greatly appreciate your help and direction as my quality of life has gone to the dark side.

Last edited by golfer33; 12-09-2012 at 07:04 PM.

 
Old 12-10-2012, 04:28 PM   #2
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Re: neurostimulator

Welcome to the board. I saw your post yesterday but was hoping someone else would respond. I believe we only have one or two members who are currently active on the board who have had some experience with a neurostimulator. I investigated the possibility at one point several years ago, but was ultimately not interested at the time.

Have you been under the care of a spine surgeon or has the pain management doctor been handling your case? Do you know what is wrong with your thoracic spine that is causing the issues? Have you explored options with an orthopedic spine surgeon? Just be sure not to rush into this and get as much information as you can before agreeing to the trial.

At least in my experience, doctors tend to suggest a neurostimulator trial very casually...like it is no big deal at all to have something implanted in your spine...something that has to be charged on a regular basis, and that carries its own set of risks and side effects.

You want to be sure that there is nothing that can be done to ameliorate your situation before agreeing to a neurostimulator.

 
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Old 12-10-2012, 08:07 PM   #3
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Re: neurostimulator

[QUOTE=teteri66;5102227]Welcome to the board. I saw your post yesterday but was hoping someone else would respond. I believe we only have one or two members who are currently active on the board who have had some experience with a neurostimulator. I investigated the possibility at one point several years ago, but was ultimately not interested at the time.

Have you been under the care of a spine surgeon or has the pain management doctor been handling your case? Do you know what is wrong with your thoracic spine that is causing the issues? Have you explored options with an orthopedic spine surgeon? Just be sure not to rush into this and get as much information as you can before agreeing to the trial.

At least in my experience, doctors tend to suggest a neurostimulator trial very casually...like it is no big deal at all to have something implanted in your spine...something that has to be charged on a regular basis, and that carries its own set of risks and side effects.

You want to be sure that there is nothing that can be done to ameliorate your situation before agreeing to a neurostimulator.[/QUOTE]

I have not seen an orthopedic spine surgeon. I did visit a physiologist at the Mayo Clinic. There are no obvious problems, except I have kyphoses from poor posture, and some spinal stenosis. There does not seem to be any major cord compression. MRI and bone scan are unremarkable. Some options are PT and pain patch. The neurologist I'm seeing for pain management, seems to feel that a spine surgeon may be too quick to suggest surgery, so he is recommending an implant. I agree that more research is needed. As you know, however, the pain can be quite debilitating. Appreciate the help. Any more suggestions, please feel free to comment.

 
Old 12-11-2012, 01:03 AM   #4
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Re: neurostimulator

I will first start out saying that I can't relate to having that implant. I have a chronic auto immune disease and that is why I am under the care of a pain management physician. I do know a whole lot about being in pain and dealing with pain management. I do know that a lot of pain management doctors like to request certain procedures that aren't necessary because they are trying to make more money. I am not saying this is the case at all with your doctor but I would look into making sure all the possible treatments are exhausted before committing to that. Also, I do not know what type of insurance you have but most insurances want a diagnoses before paying for certain things. When I first started taking ambien my insurance wouldn't cover it. I had to get prior authorization so that they know that my doctor tried every other option and treatment for insomnia before prescribing ambien. It wasn't a big issue because the problem was taking care of within three days. And the insurance did end up covering it but with certain medications and procedures some insurances will not pay without making sure nothing else can be done. I know the doctor is the one that requested it but I would sit and talk to him and ask him if this is really something that is going to be an issue for the rest of your life and see if this is something that may be corrected in time. You just want to be sure before taking that step. How long have you been taking pain medicine? and are you taking more than prescribe? Is the medications doing anything for your pain or it's not working at all? I have been on medications for years and I know I will have these problems for the rest of my life so it is something that worries me because the last thing I want is to have to take pain meds forever. My pain management doctor was going to implant a pain pump because of the fact that I am probably going to be a permanent pain patient with the stages and the damage that the disease has done to my body. I had doubts about going through it because of how permanent a pain pump is and all the maintenance that does along with it...refilling the pump pain medicine, infections, etc. Right before I was to go in the hospital I ended up being admitted to the hospital because of severe migraines and after doing some testing and stuff the found a tumor in my pituitary. Well needless to say the doctor doesn't want to do the surgery because of the tumor and said for right now I have to stay on all the strong pain meds I was very disappointed because I am so tired of taking all the pain meds but at this point I can't do anything about it. So I understand about wanting off the pills but make sure everything has been tried before doing the implant. I do know that the pain pump is different from what your doctor is suggesting but they are both major devices being implanted in your body. Which is nothing to play with. Let us know what you decide and what happens. Good luck to you and I hope things get better for you soon.
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Old 12-11-2012, 04:37 AM   #5
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Re: neurostimulator

Hi golfer33, I have had severe lumbar pain for 20+ years and yes it is intractable. I went to a spine only neurosurgeon & he located the source of my pain & recommended that I see a complex spine injury neurosurgeon who recommended that I see a pain mgmt neurosurgeon for a morphine pump. The pain mgmt neurosurgeon would not discuss the pump but wanted to do the neurostimulator. I was told that this Is a real back surgery with a 3" incision into the back & a 3" incision for the unit. Also, that this would give me a 50% reduction in pain medicine at best & I would still require pain mgmt & narcotic pain relievers for the rest of my life. Also, I would have to see a neuropsychologist to make sure that I had reasonable expectations for what the spinal stimulator would do for me, then the trial would be done if I found that during the trial the neurosurgeon could produce a more pleasant sensation & if I agreed to the implantation then my insurance would have to agree to cover the surgery & that the neurostimulator unit itself would cost $40,000. I just wanted you to know my experience & that I was told that if I decided to have neurostimulator implanted that for me it would be another real back surgery and I would still require pain medicine. I decided against the
neurostimulator in my case, however I know that you & your drs will come to a decision that is best for you.

 
Old 12-11-2012, 04:40 AM   #6
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Re: neurostimulator

Hi golfer33, I have had severe lumbar pain for 20+ years and yes it is intractable. I went to a spine only neurosurgeon & he located the source of my pain & recommended that I see a complex spine injury neurosurgeon who recommended that I see a pain mgmt neurosurgeon for a morphine pump. The pain mgmt neurosurgeon would not discuss the pump but wanted to do the neurostimulator. I was told that this Is a real back surgery with a 3" incision into the back & a 3" incision for the unit. Also, that this would give me a 50% reduction in pain medicine at best & I would still require pain mgmt & narcotic pain relievers for the rest of my life. Also, I would have to see a neuropsychologist to make sure that I had reasonable expectations for what the spinal stimulator would do for me, then the trial would be done if I found that during the trial the neurosurgeon could produce a more pleasant sensation & if I agreed to the implantation then my insurance would have to agree to cover the surgery & that the neurostimulator unit itself would cost $40,000. I just wanted you to know my experience & that I was told that if I decided to have neurostimulator implanted that for me it would be another real back surgery and I would still require pain medicine. I decided against the neurostimulator in my case, however I know that you & your drs will come to a decision that is best for you.

Last edited by gmak; 12-11-2012 at 09:47 AM.

 
Old 12-11-2012, 06:26 AM   #7
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Re: neurostimulator

About five years ago, a neurostimulator used to be considered a "last resort." This meant that when every other treatment had been tried or at least considered and had failed, then a neurostimulator trial was given as the patient's last resort to try to control pain. Now with the rise of pain management doctors, it seems to be recommended sooner in the process...but I think the qualifications for getting it are still quite stringent...at least as far as insurance carriers are concerned.

Neurostimulators are designed to take away some of the patient's pain so that the amount of pain medication that is needed can be cut down. I believe they promise no better than about 50% reduction in pain. The implant process is spine surgery so you want to check out the experience and qualifications of the doctor who would implant it just as carefully as you would if you were having a major spine surgery.

I would very strongly suggest that you consult with an orthopedic spine surgeon or a neurosurgeon whose practice is limited to the neck and back before proceeding with a neurostimulator trial. At the very least it would be good to rule out a mechanical problem that could be addressed with another treatment modality.

You might find that a combination of physical therapy with an experienced therapist who works extensively with orthopedic issues might help. Also acupuncture and therapeutic massage therapy/body work could lessen your pain and provide better structural alignment of your spine.

Have you used a TENS unit for your pain? It is my understanding that unless this helps reduce your pain, a neurostimulator will not provide much relief either.

I just feel you are too early in the process to get a neurostimulator...I would encourage you to get more information about your issues that are causing the pain, and do a lot more research on the impact of having a neurostimulator before moving ahead. Don't just go along with the suggestion of one doctor who gains to benefit financially from the implantation of this device in your spine. It may sound like a simple solution on the surface, but in reality is a complex procedure that is not without risk and ongoing issues.

If you run a search to find older posts on this topic, look for "spinal cord stimulator" as that term is used more commonly.

 
Old 12-11-2012, 06:45 AM   #8
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Re: neurostimulator

I must respond to the comment about going to a spine surgeon. There seems to be an attitude that people only go to a spine surgeon when they need surgery...and that makes sense since we don't go see a general surgeon unless we need surgery....a general surgeon doesn't make the primary diagnosis that surgery is needed. However, a spine surgeon is somewhat different.

The training for an orthopedic spine surgeon and a neurosurgeon are similar. These two specialties have the most education pertaining to the workings of the spine of any specialty. In my opinion, it makes the most sense to go to a spine specialist for a proper diagnosis and evaluation rather than chancing that another doctor with less specific knowledge of the spine manage my case. To me, it is a bit like having an expensive automobile and rather than taking it to the dealer for service, you take it to the local gas station on the corner.

It is a common misconception that if you go to a spine surgeon, you will end up with surgery. A spine surgeon will try all conservative measures first, including a course of physical therapy, oral medications, epidural steroid injections, etc. If surgery is needed, it will only be suggested after all conservative treatments have failed. If surgery will not help the situation, the spine surgeon will tell the patient that and will then refer to a pain management doctor or an appropriate doctor who may be able to help.

 
Old 12-11-2012, 08:08 AM   #9
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Re: neurostimulator

Hi golfer 33, Im sorry I forgot to mention that i believe that you can no longer use MRI as a diagnostic tool after spinal stimulator implanted. Thanks,gmak

 
Old 12-11-2012, 08:46 AM   #10
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Re: neurostimulator

[QUOTE=luvinmusiq;5102435]I will first start out saying that I can't relate to having that implant. I have a chronic auto immune disease and that is why I am under the care of a pain management physician. I do know a whole lot about being in pain and dealing with pain management. I do know that a lot of pain management doctors like to request certain procedures that aren't necessary because they are trying to make more money. I am not saying this is the case at all with your doctor but I would look into making sure all the possible treatments are exhausted before committing to that. Also, I do not know what type of insurance you have but most insurances want a diagnoses before paying for certain things. When I first started taking ambien my insurance wouldn't cover it. I had to get prior authorization so that they know that my doctor tried every other option and treatment for insomnia before prescribing ambien. It wasn't a big issue because the problem was taking care of within three days. And the insurance did end up covering it but with certain medications and procedures some insurances will not pay without making sure nothing else can be done. I know the doctor is the one that requested it but I would sit and talk to him and ask him if this is really something that is going to be an issue for the rest of your life and see if this is something that may be corrected in time. You just want to be sure before taking that step. How long have you been taking pain medicine? and are you taking more than prescribe? Is the medications doing anything for your pain or it's not working at all? I have been on medications for years and I know I will have these problems for the rest of my life so it is something that worries me because the last thing I want is to have to take pain meds forever. My pain management doctor was going to implant a pain pump because of the fact that I am probably going to be a permanent pain patient with the stages and the damage that the disease has done to my body. I had doubts about going through it because of how permanent a pain pump is and all the maintenance that does along with it...refilling the pump pain medicine, infections, etc. Right before I was to go in the hospital I ended up being admitted to the hospital because of severe migraines and after doing some testing and stuff the found a tumor in my pituitary. Well needless to say the doctor doesn't want to do the surgery because of the tumor and said for right now I have to stay on all the strong pain meds I was very disappointed because I am so tired of taking all the pain meds but at this point I can't do anything about it. So I understand about wanting off the pills but make sure everything has been tried before doing the implant. I do know that the pain pump is different from what your doctor is suggesting but they are both major devices being implanted in your body. Which is nothing to play with. Let us know what you decide and what happens. Good luck to you and I hope things get better for you soon.[/QUOTE]

Sorry to hear about your problems. I started on two tabs of hydrocodone per day three years ago, and now 2 tabs three times a day if needed. The condition is chronic, with back spasms occurring throughout the day and less frequent at night. I am trying to contact as many people as possible regarding the neurostim procedure. Thanks for the comments.

 
Old 12-11-2012, 09:19 AM   #11
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Re: neurostimulator

[QUOTE=teteri66;5102508]About five years ago, a neurostimulator used to be considered a "last resort." This meant that when every other treatment had been tried or at least considered and had failed, then a neurostimulator trial was given as the patient's last resort to try to control pain. Now with the rise of pain management doctors, it seems to be recommended sooner in the process...but I think the qualifications for getting it are still quite stringent...at least as far as insurance carriers are concerned.

Neurostimulators are designed to take away some of the patient's pain so that the amount of pain medication that is needed can be cut down. I believe they promise no better than about 50% reduction in pain. The implant process is spine surgery so you want to check out the experience and qualifications of the doctor who would implant it just as carefully as you would if you were having a major spine surgery.

I would very strongly suggest that you consult with an orthopedic spine surgeon or a neurosurgeon whose practice is limited to the neck and back before proceeding with a neurostimulator trial. At the very least it would be good to rule out a mechanical problem that could be addressed with another treatment modality.

You might find that a combination of physical therapy with an experienced therapist who works extensively with orthopedic issues might help. Also acupuncture and therapeutic massage therapy/body work could lessen your pain and provide better structural alignment of your spine.

Have you used a TENS unit for your pain? It is my understanding that unless this helps reduce your pain, a neurostimulator will not provide much relief either.

I just feel you are too early in the process to get a neurostimulator...I would encourage you to get more information about your issues that are causing the pain, and do a lot more research on the impact of having a neurostimulator before moving ahead. Don't just go along with the suggestion of one doctor who gains to benefit financially from the implantation of this device in your spine. It may sound like a simple solution on the surface, but in reality is a complex procedure that is not without risk and ongoing issues.

If you run a search to find older posts on this topic, look for "spinal cord stimulator" as that term is used more commonly.[/QUOTE]

Thank you for your excellent comments. Since neurostimulation has been around for many years, pain management doctors apparently feel more confident in their use. But the more I read, it's serious stuff, with most insurance carriers requiring a psych evaluation. Unfortunately, I live in an area where highly trained PT (orthopedic types) and orthopedic spine surgeons are not readily available, so perhaps returning to Mayo may fill that gap. I also intend to pursue accupuncture. Message therapy seems a temporary fix. When I was at the Mayo Clinic, I was told that some of the best PT people were from S.Amer., China, and Germany. Freddie Couples found one in Germany. I'll keep looking. Please tell me about the TENS unit. Unless it's portable, I'm not sure it would be useful. I'll also look for more information under "spinal cord stimulator." Again, appreciate the support.

 
Old 12-11-2012, 10:07 AM   #12
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Re: neurostimulator

Hi golfer33, I think that TENS are wonderful help for pain in the back. I've only used it on lumbar spine. It is portable. I use gel reusable electrodes & rechargeable batteries in/with my TENS. They have newer types. I think your dr would know all about TENS. They have been around since1982 to my knowledge. Some might not agree that tens helps them but I put it on, and "Ahh, thats better". I used it 24/7 during a time of great pain when I was changing drs, that little "buzzing" box saved me!

Last edited by gmak; 12-11-2012 at 10:10 AM. Reason: edited out

 
Old 12-11-2012, 10:32 AM   #13
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Re: neurostimulator

That's really the point of trying a TENS unit. If it doesn't relieve pain, then you can be reasonably sure that a SCS (neurostimulator) will not help much either.

Personally I couldn't stand a TENS. It just made my nerve pain worse and made everything feel highly sensitized.

To golfer ~ if you have a physical therapist, they can try TENS on you to see how you respond. I liked it initially. It was only after I had my own unit and was using it every day that I began to detest it.

I don't mean to scare you off pursuing a neurostimulator. I just know how casually doctors recommend them and know people that have had really major issues as a result of having one implanted...and I just want you to go into any decision fully informed, with your eyes wide open!!

It just sounds to me that your issues could be addressed in a less invasive way.

 
Old 12-11-2012, 11:34 AM   #14
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Re: neurostimulator

[QUOTE=teteri66;5102625]That's really the point of trying a TENS unit. If it doesn't relieve pain, then you can be reasonably sure that a SCS (neurostimulator) will not help much either.

Personally I couldn't stand a TENS. It just made my nerve pain worse and made everything feel highly sensitized.

To golfer ~ if you have a physical therapist, they can try TENS on you to see how you respond. I liked it initially. It was only after I had my own unit and was using it every day that I began to detest it.

I don't mean to scare you off pursuing a neurostimulator. I just know how casually doctors recommend them and know people that have had really major issues as a result of having one implanted...and I just want you to go into any decision fully informed, with your eyes wide open!!

It just sounds to me that your issues could be addressed in a less invasive way.[/QUOTE]

Thanks for your comments. Since I am a serious golfer, I'd like to give it a try. As long as it's not at the other end of the spectrum, I'd try anything. If you hear of less invasive means, and any "success" stories (pain reduction, not necessarily elimination), please let me know. Much appreciated.

 
Old 12-11-2012, 11:52 AM   #15
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Re: neurostimulator

[QUOTE=gmak;5102613]Hi golfer33, I think that TENS are wonderful help for pain in the back. I've only used it on lumbar spine. It is portable. I use gel reusable electrodes & rechargeable batteries in/with my TENS. They have newer types. I think your dr would know all about TENS. They have been around since1982 to my knowledge. Some might not agree that tens helps them but I put it on, and "Ahh, thats better". I used it 24/7 during a time of great pain when I was changing drs, that little "buzzing" box saved me![/QUOTE]

Sounds like you know quite a lot about TENS. What type is yours and did you order it on line or through a doctor's office? I would certainly like to have that "Ahh, that's better" feeling. If it's the unit they use in the physical therapist's office (it was a large machine), it seemed to feel good, but my problem is mostly in the standing, bending position, and I have never seen a portable unit. Thanks for the information. Looking forward to any further comments. Just a my opinion, but the internet seems to have a lot of negative descriptions of neurostimulators. Maybe it's because they were unsuccessful; while the successful participants never felt the need to respond.

 
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