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SCS Research

2

Comments

  • am going to be honest with you, Dave. Here is what you wrote:

    "I go to work every day. I do what I want, when I want, no matter what."

    If you report pain levels of 2-3 on an average day AND you can work, and a 4 withOUT any meds??? I would NOT pursue the SCS. Your current pain regimen is EXCELLENT. As already suggested, I would seek info on your "grey" feeling, as it could be light depression.

    Even though people have been told over and over that this is NOT a cure, and that med use will more than likely still be the case, some people do not hear that or believe it or something (not sure) and find themselves unhappy with the SCS. This should be a last resort situation - when there is NOTHING else that is working.

    In my case, I have permanent S1 nerve damage and I would describe the pain as this: 24/7 mind-numbing, burning butt to toe pain that never stops. Had to stay reclined 23 hours a day in FULL recline, only getting up to eat and pee. On major meds, the lowest pain level I ever felt was a 5 out of 10 and that was if I did nothing nothing nothing. Were I to have to go to a doctor's appointment, then I was at an 8. Period. There was nothing that helped. That pain didn't come and go, it was constant. Additionally, my feet are partially numb over 2/3 of the foot, making me have serious balance issues along with not feeling things like pavement changes. I fall easily.

    I had tried meds, injections, selective nerve root blocks, physical therapy, massage therapy, acupuncture, meditation, even Reiki! I had 3 surgeries in 12 months, 2 of them fusions and ended with a 360 fusion with full hardware which finally did stabilize my back. But the entire time, even before all 3 surgeries, I had permanent nerve damage (we now realize). Because my nerve damage is permanent, there is no cure and nothing to be done. I was intolerant to all of the nerve meds - Neurontin, Lyrica, and Cymbalta and could not take them at all - was in a walking coma. I did not want to take more and more narcotic medications because it altered my awareness.....it took "me" away. With the SCS, I am still on my long-acting dose that I was before, but I rarely take any BT meds OR muscle relaxers. Only when I go on a trip or do too much do I need more than my LA meds.

    I spent my days fully reclined and praying for relief. I went into the SCS highly positive after researching for over a year, reading positive and negative testimonials. I had to endure a 5 hour psych evaluation that left me taking a 567 question test (MMPI 2) on my back on a hard concrete floor holding the test over my head to block the light. I was in tears and could barely see to even color in the dots. The 30 minute interview portion with the doctor did me in and my back would only take about 10 minutes in the office type chair at the desk provided taking this test. I was beside myself in unbearable pain and literally ended up on the hard concrete floor (which caused it's own pain) until the psych doc walked by and saw me, and brought me a pillow for my head.

    When I was done, I could barely get up off the floor and had a breakdown in the car when hubby got me out of the office. I am a young 43, darn it, I have so much energy and so much love.......why does my body have to hold me back? The S1 nerve sits right at the low back - sitting is a major trigger, which is why I had to stay reclined. That test should have only taken no more than 2 hours. But with me laying on the floor, it was almost 5 hours for me. Pure Torture.

    This was a description of my attempt to do ANYTHING beyond staying full reclined in my chair. I was in BAD shape BUT, as I told the doc, if my S1 nerve could be stripped out (and I still could walk!) I KNEW that Cheri would be back. (That is not an option, btw, with motor nerves, I was just trying to make a point.) The only thing holding me back was that permanent nerve damage of ONE nerve. Everything else was good - my mind, my motivation, my personality, my happiness, my belief that I would get better somehow........and it was the truth. My glass has always been half-full, not half-empty.

    I had no other options. I KNEW the SCS was my answer. I KNEW it was not a cure, I knew it was going to be a supplement to help me with the pain, and I was fine if I stayed on all meds. I did not have any unrealistic expectations at all. And I have been thrilled beyond belief with my experience.

    Yet others may say - well, how is that? You still take meds, you still don't bend, lift or twist, and now that I am so active (taking trips for 8 hours, going wherever I want, no problems), now I have back pain I never had. This back pain gets NO relief from my SCS, although I do have 2 leads in my back. But I don't care AT ALL. Why? Well, for the back pain, if I just take it easy, the back pain lessens. But instead of feeling that awful burning nerve pain, I feel buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
    buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
    buzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
    all day long, 24 hours a day. And Dave, that buzz feeling is simply sent by God to me. I never turn it off. When I do, within a few hours, I have full on burning nerve pain again. My remote control never leaves my side. I feel utterly and totally blessed to have been given this opportunity. I thought I might go mentally insane with that pain. There is just so much a person can tolerate, you know?

    But again, if I could work and if my pain levels were well-controlled with medication that I could see 1-3?? I would not find it time to try the SCS. If the SCS were to remove 50% of your pain, then you'd be at a .5 to 2?? See what I mean? You already have very low pain levels compared to what it could be. I hope that doesn't offend you. You are actually very lucky and I am thrilled you are still able to do everything you want and most importantly, work if you choose.

    Hope I answered some of your questions fully enough. If not, just let me know.

    Take care,

    Cheri

    P.S. For the back pain, I use a product called Imflamyar (used by Lance Armstrong!) and it is wonderful. It even does take some nerve pain away as well if I rub it deeply into my buttock. I got it through a Naturopathic Doctor but have seen it online.

  • Cherish I haven't seen anywhere if you ever had a TENS unit. If you have, how would you describe the difference, if any, compared to the SCS? I mean the bzzzzzzzzzzzzz... feeling. LOL
    Actually my PM told me my only option left if the Savella doesn't work is the SCS. I'm nervous about having anything permantly mounted inside my body that buzzezzz. Of course I would have the trial, but it kinda sounded if you get the temp you get the perm. My TENS I think only distracts me for a very short amount of time only cuz I get numbbutt. Thanks in advance for any help you might have. marla
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  • Cheri,

    You gave me a lot to chew on, and I thank you for the information. However, I would like to clarify a few things:
    cherish22 said:

    "I go to work every day. I do what I want, when I want, no matter what."
    My back surgeries have supposedly corrected any mechanical defects in my back. My problem is the L5 nerve root exiting to the R and L around the L4/L5 area. It does not matter if I do any of the following:

    - Sit (Pain)
    - Stand (Pain)
    - Walk (Pain)
    - Run (Ok, got me here, don't do this one)
    - Work (Pain)
    - Play (Pain)
    - Yard Work (Pain)

    Do you see a theme here? It doesn't matter what I do, so why restrict my life. The L5 nerve has only one rest position that I know of. It requires me to lay on my side in my bed with my legs in a weird position. This is how I sleep, but I refuse to spend the rest of my life in this position to be relatively pain free.
    cherish22 said:

    If you report pain levels of 2-3 on an average day AND you can work, and a 4 withOUT any meds???
    To be totally honest, I have only gone 1 time in the last 6 months without any prescriptions so my estimates are basically guesses. I still think they're pretty accurate, because the one time I did go beyond the normal time I would take something I did experience pain levels around an 8. Of course that day had also been an action packed day of activities. I am very proactive in managing my pain so I can function. Pain meds do not make you pain free, they only help you manage a better existence.

    As for "AND you can work", I do so to provide for my family. What would you have me do, lay in bed all day feeling sorry for myself? I went back to work within 2-3 weeks of all my surgeries no matter how I felt. I have a mortgage, bills, and a family to provide for. I found this comment to be very offensive.
    cherish22 said:

    I would seek info on your "grey" feeling, as it could be light depression.
    ...
    I did not want to take more and more narcotic medications because it altered my awareness.....it took "me" away
    When I mention the grey, it's sort of what you're "took me away" turns into long term. It's very hard to describe. It's not depression, trust me on that. It's just a way that the oxy does to your thought process, it clouds your thinking (very hard to put into words).

    Sorry to here about the numb feet. I only have the left foot numb (L5 nerve root damage 7 years ago) and its a feeling I've never gotten used to. I don't know about both feet, but I was able to compensate for the loss of sensation after several years.

    Dave
  • i too am researching it.
    Why not get the trial to see how it feels. if it works on the trial then go for the permanent insert.
    read all info on this site...just type scs in search field
    good luck....hope it works for you
    pete
  • Pete,

    Thanks. I was just trying to respond to a couple of the responses left for me. I wish I had taken the opportunity to discuss this subject with my Father In-law who passed a way a couple months ago. I know it worked really well for him. He had an SCS for the same problem area (oh and Chari, HE WORKED). We never really talked about that stuff. Hind sight is 20/20.

    The biggest problem he had was, last year he could not find a hospital willing to replace the battery under Medicare Insurance. Something to think about.

    Dave
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  • Hi Dave,
    I understand that you feel a low level of pain in the morning (1-2) and by the end of the day you can get up to a 4. Everyone is different in the levels of pain they can tolerate. These levels might seem good to some people. You are the only one that can determine what level of pain is acceptable to you. Have you considered trying a long acting medication? My sister is on the patch and she has a very full life. She is almost never in any pain. No one would ever guess she is medicated. She feels great. My PM doctor does not want to give me the patch. He believes that the patch may be an option in the years ahead, but not now. I have been in pain for 5 years and I have never had a pain level below a 4. I have two permanent SCS's and I take medication. A good day for me is around a 5. However, I would be at a 10 without my SCS's and meds. You might be pain free if you get the SCS. That does happen for some people. I hope you decide to go for the trial. It can't hurt and it may allow you to reduce your meds. Maybe you won't even need the meds. Please take care and let us know what you decide.

    Melissa
  • Cherish, thank you so much for such an awesome & eye opening description of your pain levels. You really gave some effort in your response to fuel some internal questions on the subject.

    Dave, man...I'm "so" with you on this. If there's something that can help with pain that isn't in pill (body destroying) form...go for it. I hate the mental-fog crap shrouding my once brilliant mind too. But...Cherish has a good point. You're trying to get rid of the distraction of pain...with a possible more annoying distraction of "buzz" (heh, the wrong kind of buzz too).

    Please let me know what ya end up doing.

    jas
  • Melissa,

    The one thing I do not do is make requests or suggestions to my Doctor. He is in charge of my care. Only one time did I request that my dosage be changed and that was down, so I could force myself to manage what I call the "grey" better, which my PM Doctor is aware of.

    I solve problems for a living. I spend months analyzing and pouring through information and data, then devising and programming a solution for it. My PM Doctor knows what I do for a living and treads very lightly not to mess with my mind so I can work. At our last appointment, he brought up the subject of the SCS. One can only assume, he knows that I will leave no stone unturned in determining if its something that might be appropriate for me.

    It's also possible that once I start taking my new prescription (Topomax) full time, it may provide the edge I've been looking for, I don't know.

    Dave
  • I have one other question. My L leg gives out usually about once a day about noon and then it gets more painful throughout the day and of course continues to give out. My pain level is around a 7 :''( . I’m in retail so I’m on my feet all day. Have any of you heard anyone say if they have relief from this with the SCS? My back starts crunching also after the ole leg goes out and starts to hurt pretty bad. My leg I’m sure will continue to give but if I can get rid of the pain with the SCS (WOW!!) I will call today for an appointment. The doc keeps bringing it up and I procrastinate.
  • I'm sorry, I did not mean to offend with the "you work" comment and I wonder if you mistook my meaning. As I said, I spent 23 hours a day fully reclined. In my "pre-pain" life, I was a hyper, busy, successful real estate agent who also staged homes on the side, moving furniture, decorating homes, etc. That was all taken away from me, even today. There is a level of pain that is reached that prevents working, regardless of financial status. I thank God every day that my husband can provide for us without my contribution.

    When you get home every day from work, are you in so much pain that you run for more meds, have to lay down, and it affects the quality of your family time? Those are all details I would use to make your determination.

    Some people are housebound, do nothing, and report pain levels of 5 and above. (me, for example, prior to SCS). You are able to get out and work for a living, and that is awesome. With all the activity you do, you report the pain levels you have. If you were had to stay home in a recliner, would your pain levels go down? I'm assuming so.

    With my 'new' life of going and doing pretty much whatever I want, I still have pain levels of 4-5!! But it is back pain now, and I know that can be managed once I get home from the trip, rest, etc. If I had no SCS, I would be approaching 9-10 range pain, combining the nerve pain with the back pain from the increased activity. So I remain on my LA meds, occasionally take BT and muscle relaxers and I'm living OK. My mind if "freed" from the torment of the burning nerve pain.

    My only point was that many of us could never think of working ever again. Pain for us is so bad it took that all away.

    If you have time to search my username in the pain management forum, you can read the long, harrowing story of what happened to me during my SCS trial. It was no walk in the park and left me with post traumatic stress syndrome for a bit. But, I had NO other options and had to push forward (while never allowing that particular doctor to ever touch me again.)

    The end result of the SCS is to get 50% reduction in pain or more. With the risks, the procedures, the surgery, the scarring and the implanted IPG (impulse generator), only you can be the one to determine if going through all that would make a huge difference in your life. I hope your SCS trial would be smooth and successful. (There are several of us here on this board this year that certainly wish OUR SCS trials had been smooth and easy, huh Wrangler! lol)

    If you haven't tried long-acting meds, then I would definitely try that before the invasiveness of the SCS trial. When I switched to LA meds, it made a huge difference. I was also concerned with what the meds were doing to my personality, my ability to think and function. The LA meds release slowly over 12 hours, giving constant relief. No more "is it time to take a pill" every 4 to 6 hours.

    When I was researching, I was looking for honesty and that's what I tried to provide. Please don't let the misunderstanding over the comment color your interpretation of my lengthy and well-intentioned responses. There are many of us who pray that we can return to work some day, but sadly will never be able to. That's all I was saying.

    Take care,

    Cheri
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