[smae]

Hey all
I wasn't quite sure what to title this message.
I have obviously been doing some research on the SCS before I tell my pain management doctor that I want to proceed forward with the process.
I have read about places in your body that the SCS can help... such as helping with neuropathy in your feet. I don't understand how they position the leads to reach the correct areas, but I don't really need to know how it works, just that it will work.
The one thing I am wondering about, though, is if anyone has it set up to help their back. I have a very severe case of peripheral neuropathy, but I also have 5 different things wrong with my back and have had chronic pain in my back since I was a small child.
I've read over and over that the FDA has not actually approved the SCS for help with back pain, though some doctors still set it up that way even though it isn't approved.
Can anyone confirm if this is still true? I have been hoping all along that I would be able to get relief not only in my feet, but also my back. However, if it's not approved by the FDA, I think I will have a hard time finding a doctor who will do that for me. I have two choices of towns an hour away (one south and one north) that I can go to have the surgery done. The town south of here has many doctors who will do the surgery, but the town north of here only has one. That's the town I want to go to because my doctor is a good friend of the rep and says that they use a newer and better technology than the town south of here. He said either would be okay, but if he were having the surgery, he would go north of here. I want to follow his advice and have the newer (and usually, though not always) technology. Since I only have one doctor there who can do this, if he won't set it up to help my lower back, then I won't have another doctor to check out.
The pain from the neuropathy is the greater pain, and the pain I am really looking to control so I can get my life back--but I just would really like to help the pain in my back as well. It isn't as bad as the pain in my feet, but some days are really bad.
Just curious if anyone has it set up for their lower back, and if anything has changed and if the FDA has approved it yet.
Thanks
Sarah

Originally Posted by Sarah Mae

Hey all
I wasn't quite sure what to title this message.
I have obviously been doing some research on the SCS before I tell my pain management doctor that I want to proceed forward with the process.
I have read about places in your body that the SCS can help... such as helping with neuropathy in your feet. I don't understand how they position the leads to reach the correct areas, but I don't really need to know how it works, just that it will work.
The one thing I am wondering about, though, is if anyone has it set up to help their back. I have a very severe case of peripheral neuropathy, but I also have 5 different things wrong with my back and have had chronic pain in my back since I was a small child.
I've read over and over that the FDA has not actually approved the SCS for help with back pain, though some doctors still set it up that way even though it isn't approved.
Can anyone confirm if this is still true? I have been hoping all along that I would be able to get relief not only in my feet, but also my back. However, if it's not approved by the FDA, I think I will have a hard time finding a doctor who will do that for me. I have two choices of towns an hour away (one south and one north) that I can go to have the surgery done. The town south of here has many doctors who will do the surgery, but the town north of here only has one. That's the town I want to go to because my doctor is a good friend of the rep and says that they use a newer and better technology than the town south of here. He said either would be okay, but if he were having the surgery, he would go north of here. I want to follow his advice and have the newer (and usually, though not always) technology. Since I only have one doctor there who can do this, if he won't set it up to help my lower back, then I won't have another doctor to check out.
The pain from the neuropathy is the greater pain, and the pain I am really looking to control so I can get my life back--but I just would really like to help the pain in my back as well. It isn't as bad as the pain in my feet, but some days are really bad.
Just curious if anyone has it set up for their lower back, and if anything has changed and if the FDA has approved it yet.
Thanks
Sarah

Hi Sarah

I originally started off with lower back pain of unknown origin I might add. After 4 surgeries and no further along whatsoever I started having neuropathetic pain down my legs. Which wasnt there when I first had my problem. Anyway, when I was asking about a SCS I was told that it is very good for Failed Back Syndrome (lower back pain ) and that I would benefit immensely from it. I would also benefit for the burning, tingling, stinging, stabbing pains that I get in my legs also.
So when it was implanted and set up, yes I get great relief in my legs and 'some' in my back. I am having it tweaked next week and Im confident that I WILL get it to cover the pain I have in my back, it often feels achey, heavy, dragging and painful. At the moment Im only get a limited amount of relief. But Im sure once its turned up etc it will definitely help my back. Im sure your doctor would only suggest it too if he felt that you would benefit from it. Im sure you know the procedure before you actually get to the permanent stage? the psychological test, then the trial and then the implant if all goes well. I do hope that if and when you get it that you too will gain some great relief from you pain.

Jackie

[Mark56]

Hello my friend-

Being one who was categorized as failed back surgery syndrome and radicular neuropathic pain syndrome and I forget all of the jargon which amounted to "well..... you have nerves which are damaged permanently from your low back down those legs" I was a recipient of paddles at the T8 location of my spinal cord. We programmed the electrodes of those paddles to cover as much and as differently as possible the pain profiles I present. Right now, using my number 1 program and having it pushed up as I have left it mostly since that recent pain spike, I feel the stim and have relieve in low back down both legs. Since I am numb below the knees, I don't "feel" much going on stim wise there, although my right foot catches a bit of a tingle [which is exciting for me] on this program and this setting. Do bear in mind that my right foot neuropathic presentation also includes "Hot Foot" sensation, like boiling water, and I have not noticed anything helping that just yet [matter of fact, it is noticably "hot" right now].

Now as for the hope and any prospect that I will ever regain feeling in my feet because of this stim device use, the answer is "NO." Stim will not restore damaged nerves as its presently stated purpose is pain blocking. It truly works for that.

Time will tell for all things.
Mark56 PJ

P.S. Your doc is welcome to read this thread, by the by, if they want to follow the comments you get. I think there are some docs taking a look at my Boston Sci thread as it is a chronology. Give them your link, if you want to.

Originally Posted by Mark56

Hello my friend-

Being one who was categorized as failed back surgery syndrome and radicular neuropathic pain syndrome and I forget all of the jargon which amounted to "well..... you have nerves which are damaged permanently from your low back down those legs" I was a recipient of paddles at the T8 location of my spinal cord. We programmed the electrodes of those paddles to cover as much and as differently as possible the pain profiles I present. Right now, using my number 1 program and having it pushed up as I have left it mostly since that recent pain spike, I feel the stim and have relieve in low back down both legs. Since I am numb below the knees, I don't "feel" much going on stim wise there, although my right foot catches a bit of a tingle [which is exciting for me] on this program and this setting. Do bear in mind that my right foot neuropathic presentation also includes "Hot Foot" sensation, like boiling water, and I have not noticed anything helping that just yet [matter of fact, it is noticably "hot" right now].

Now as for the hope and any prospect that I will ever regain feeling in my feet because of this stim device use, the answer is "NO." Stim will not restore damaged nerves as its presently stated purpose is pain blocking. It truly works for that.

Time will tell for all things.
Mark56 PJ

P.S. Your doc is welcome to read this thread, by the by, if they want to follow the comments you get. I think there are some docs taking a look at my Boston Sci thread as it is a chronology. Give them your link, if you want to.

Mark its interesting to hear how you have sensation in your back and down your legs. I would suspect then that the fact you have the paddles means that those paddles are 'in place' and therefore once you have the feeling in the correct place then any movement on your part wont 'move' the sensation ,say when your lying down and then stand up? or from sitting to maybe going for a walk? because this happens to me. Great coverage lying and sitting but disappears only to my legs once I stand up and go for a walk. Im sure this will be rectified, but interesting to see the difference between leads and paddles

[Mark56]

Originally Posted by jackiekennedy

Mark its interesting to hear how you have sensation in your back and down your legs. I would suspect then that the fact you have the paddles means that those paddles are 'in place' and therefore once you have the feeling in the correct place then any movement on your part wont 'move' the sensation ,say when your lying down and then stand up? or from sitting to maybe going for a walk? because this happens to me. Great coverage lying and sitting but disappears only to my legs once I stand up and go for a walk. Im sure this will be rectified, but interesting to see the difference between leads and paddles

Well................. The change of posture or position produces a modulation of the wave so that the intensity varies, even substantially, although the area affected by the program remains consistent. Here's a concept: place a thumbtack point side up on a table, press gently on the tack with your finger and note the sensation. Taking the same tack in the identical position increase the pressure of your finger, noting the change in the sensation, although the area affected remains the same. Now apply the notion to the use of a program while in position, then vary the position somehow, notice the signal intensity varies while the affected area remains the same. Anyway, this is the manner in which I note such effects on the signal depending on posture or position.

Mark56 PJ

[Leesa]

Hi ~ I had a stimulator ~ it's been removed due to problems, but my leads were between my shoulder blades. I'm not sure exactly where. I too am a lumbar patient with pain going into my feet. The stimulator covered the whole area, but it seemed that the stimulation irritated the sciatic nerve more than it helped. I was in more pain than before.

I had to have it removed after 6 months, which is no picnic. I had thought all along the SCS was approved for the back. Goes to show you what i know. LOL. Hugs, Lee

[Mark56]

Sorry to read you had to have it removed after giving it such a try. Thank you for your bravery and willingness to share your history with us here, as Sarah is trying to prepare for an important decision making process herself.

z
Mark56

Originally Posted by Leesa

Hi ~ I had a stimulator ~ it's been removed due to problems, but my leads were between my shoulder blades. I'm not sure exactly where. I too am a lumbar patient with pain going into my feet. The stimulator covered the whole area, but it seemed that the stimulation irritated the sciatic nerve more than it helped. I was in more pain than before.

I had to have it removed after 6 months, which is no picnic. I had thought all along the SCS was approved for the back. Goes to show you what i know. LOL. Hugs, Lee

[Rrae]

There is much info in the stickies above at the top of the page.....
Fiona has left a very informative site you might find very helpful.

Not sure where you are getting your info that SCS isn't approved by FDA for lower back as, that is what a great majority have had done with great success and that is usally one of the most common types performed.

May i suggest doing a bit more reading up on the websites people have worked diligently in putting in the information section of the SCS, so as not to have to repeat pertinent info that is already there.
OR ASK your doctor for more detailed information regarding your particular case especially it being very mult-dimensional medical case history.

Also, you may consider looking on the direct websites of the SCS manufacturers themselves.....

But again, the website in the stickies that Fiona provided pretty much spells it out in plain english. It also goes in to detail about the other very common SCS procedure done in the mid/upper back (cervical spin)

There is A LOT OF RESEARCH that needs to be done on this procedure.
MUCH MUCH MUCH research.

Rae

[smae]

Rae,
That's why I asked you guys if that was still accurate. I wasn't saying "it definitely isn't approved for lower back pain".. I was saying that I have read many times that it isn't FDA approved for that reason. It may have been old information that I was reading--that's why I was asking.

[Rrae]

Have you read the informative site provided?
If you haven't been able to find it, here it is:

http://neurotalk.psychcentral.com/post686297-11.html

There is a small segment within this info site that addresses what you may be referring to, I'm not sure.

Given the fact that you've got '5' things wrong with your back, there is NO way we can give you advice that only a professional can give.
We can offer you support and links to informative sites, but we can not zero in on whether this implant is right for you.
If your Dr is telling you that this procedure hasn't been FDA approved for YOUR case management, then take HIS word as gold, not ours.
All we can do is provide you with our experiences, and the LINKS to informative sites.
PLEASE READ these links!! THEN ask (for support) We cannot give medical advice.
Rae