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New Member with Decades of pain!!

Hello All,
Found this site researching side effects of SCS (spinal cord stimulator ). I'm 53 year old male with 28 years of chronic pain from Lumbar back issues. Pain started in 1986 running down my right leg/buttock area with extreme stiffness and hip joint pain. Diagnosed in 1988 with AS Ankylosing Spondylitis with degenerative disk disease and herniated disk at L5-S1. Had my 1st surgery in 7-1992. Eight back surgeries later(L1-S1). I had the St. Jude's SCS implanted in 8-2012. I'm also on full disability from 2006 on.
As far as chronic pain goes I believe you have only 2 choices let it control you or you control it. I have chose the later, it did take along time to realize this. There are many things that I can no longer do but this has led me to find new things that I can do. I still mow my lawn-it may just take me longer than most. I go fishing a couple of time a week although I had to sell my boat. I even go ice fishing. I volunteer at the local senior center 1 day a week. We play cards, checkers, chess or I help them with a stamp/coin collection. I find that I can hurt anywhere so I might as well try and focus on something else besides the pain.
I guess my point is that chronic pain is only part of your life NOT your whole life as it may seam. I still have bad days and take some meds but not as many as before.


  • kinpainkkinpain Posts: 958
    edited 09/14/2014 - 4:04 PM
    I am impressed by your philosophy. You are absolutely right, if you have to live with pain, you should not let it take over your life. You may be in pain but you still have a useful life. This is wonderful, but I can't help but wonder, is there no way to lessen your pain? Are you seeing a pain doctor?
  • Hello kinpain,
    Yes I'm seeing a pain specialist for 7 years. The spinal cord stimulator helps reduce some of the pain but only about 40%. My pain averages about 5-7 on the scale. I have extreme right leg pain/ numbness from the hip to the foot and lower left leg pain/numbness. Most of the pain is from copious amounts of scar tissue and a narrowing of the nerve root passages. I have had 8 lumbar surgeries with multiple revisits at L4-L5, L5-S1. I take 4 percocet a day plus the spinal cord stimulator.
    It is what it is. I'm a lot better off now than before the implant. I can walk for about 15-20 minutes on a good day before 2-3 minutes before the pain was so bad I would get sick. It felt like my right leg was on fire with a thousand knifes in my knee. Now I only get that feeling when I stand in the same position for a few minutes-doing dishes or at the store in line. Because of the AS I am not a candidate for the disc replacement or a lo of the other hardware options.
  • I just joined myself and was reading some of what you wrote, and wanted to say it is good to see some positive comments about not letting the pain be in control and keeping your mind on things like cards or fishing etc.. I have the same problems in my legs like you described knives stabbing you in the knees but mine is all of the time, and numbness/tingling. I can't have surgery on my back but was wondering what this implant is you are talking about? Is it something you get in your back or what? I get pain shots and stuff but they make me hurt worst most of the time and am looking to find something else. What does A.S. stand for did you say I cant find it? Is that the SCS thing or something different?
  • Good morning countrycool,
    Hello and Welcome, My implant is a St. Jude's SCS (spinal cords stimulator). There is also 2 others Boston Scientific and Medtronics. It's basically the old misdirection play- it applies a small shock to the spinal cord to district the pain.
    Heres a link provided by this site with all the info:
  • badbackBARRYbbadbackBARRY Posts: 1
    edited 09/15/2014 - 3:10 AM
    I'm 52 years old been through 6 failed lower back ops. I have 2 cages with bone in them and the bones did not GROW to fuse I have a damaged nerve with a lot of scar tissue on it have a lot of pain in lower back and down my right leg my leg is very weak and numb. seen 2 Nero doc's and 1 ortho doc all said if they were to go in and try to remove scar tissue I take a 90% chance of lost to my right leg. I have 5 deteriorated disc in upper back lots of bone spurs. OH EDIT I JUST ABOUT HAD IT with this body getting so hard to deal with this back. pain meds calm the pain down some but the DEPRESSION and just all of it is getting to me just at my last end with all this!!!!

    Post edited to remove inappropriate language...Liz spine-health moderator.. Please read the Forum rules
  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • BadbackBarry,
    I hear you man!!! Sometimes the depression can be more overwhelming than the pain it self. The depression for me comes in cycles and the pain is the constant. I have refused the medication for the depression- don't need or want any more zombie pills. Do you see a pain management doctor and if you do is there a psychologist on staff. I'm not trying to be disrespectful but I talk with mine on a regular basis and it does help. Sometimes just venting your frustrations and anger or for me its the feeling of being useless helps. My back issues have cost me just about everything in my life. From my marriage to my job and even my financial security but every day when I get up and can put 1 foot then the other on the floor and stand up- I tell myself it's going to be a good day. So today is going to be a good day.
    Now off to another doctors appt.
  • Hi, all.....I am a 53 year-old male recently retired from the military after 28 years. I was diagnosed with Focal-Torsion-Dystonia back in 2005 and had to get a waiver to remain active duty. I managed to endure the back pain that came with the dystonia; however, as I'm aging my lumbar disks have narrowed, and it has become a daily struggle just to do routine everyday movements. I was hoping to avoid back surgery, but I have realized that it may be the only course of action. I just recent began taking Hydrocodone 5mg with acetaminophen 325mg, or, commonly called, Norco. I have had to double the dosage, but refuse to go higher due to amount of Tylenol. I am a former medic, so I know a bit about medicine. However, I don't know about back surgery. The only exercise I could do, until just recently, is ride my bicycle 70+ miles a week, but now it is becoming hard just to ride 30 miles a week. The pain has become unbearable. I'm not looking for sympathy, and I know life can suck, but it has become more sucky as of lately. I wail see my practitioner tomorrow to 'suggest' surgery as my next course of action. I cannot live with this pain for the rest of my life. I cannot even concentrate on daily functions w/o thinking of how much pain I am enduring....I just wanted to introduce myself and say thanks for reading. Peace.
  • LizLiz Posts: 7,832
    edited 09/15/2014 - 9:26 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • dilaurodilauro ConnecticutPosts: 9,859
    I just read your initial thread and decided not to read any of the follow on posts.
    The reason was that since you have been dealing with chronic pain for so many years, you made the decision to allow chronic pain to rule your life or for you to decide on how to live

    So many members here have been faced with spinal problems and for one reason or another have allowed that situation to dictate how they are going to live

    There is no question that having spinal problems, spinal surgery, especially at a young age can damper spirits and make it seem like there is no real hope. But there is hope and it sounds from your thread that while you are in pain, you deal with it.

    I try and try to communicate this to our members. I don't want to under estimate or undermine anyone's pain and discomfort. I fully understand what people are going through. I also understand what people are going through... I've been there myself.

    I hope the best for you, every single day
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
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