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Andrew FH - New Member Introduction

BelycBBelyc Posts: 49
edited 06/11/2012 - 8:53 AM in New Member Introductions
Hello, and thanks for reading my post. Putting my experiences in words is helpful for me, and I hope it is helpful for other chronic back pain sufferers.

I lived an active lifestyle growing up: tennis team, swim team, avid bike rider and something of an adventure seeker. I enrolled in university and rented a house in biking distance. I was an art major, and rode my bike balancing a heavy tackle box with supplies and large sketch pads to classes. About halfway to earning my degree, I designed and performed a performance art piece. I'd vaguely heard about correct ways to lift, but being young, strong and oblivious, I didn't think about back health. As part the piece I was chained to the leg of an incredibly heavy table, writhing to get free, and I twisted my body and lifted the table off the floor. I felt something indescribable in the lower half of my body, yet it was the end of the piece, I was adrenaline pumped, and I finished it off. After limping off set, the other students & instructor could see something was wrong and they sat me down to rest.

That's when it all began. I felt rested enough and tried to stand, but my legs would not move. I couldn't wiggle my toes. I tried to stand and collapsed to the floor in a heap. I was carried to the infirmary and given rest and medication. After a bit I could hardly move, so my aunt drove me home, where I stayed in bed a few days. I went to a specialist who said my problem was scoliosis. I was stunned. I had a friend with scoliosis and I couldn't understand how I could be in my 20's, never have it diagnosed, and have it brought on by sudden acute pain. Being young and brought up to trust doctors, I didn't seek a second opinion. In a small town, I didn't know where I'd get one anyway. I took hydrocodone (Lortab, Vicodin) often for 2 years, until I graduated I moved to Houston. After a few months on my job and enduring terrible pain, I went to a top specialist. I did not (and do not) have scoliosis. I had a herniated disc.

The doc performed a lumbar laminectomy in 1992 at L4-L5, and whilst working there, noticed I had spinal stenosis and cleaned out those 2 levels. I was relatively fine for 10 years. Occasionally taking hydrocodone. Then it came back, progressively worsening. I had several epidurals & facet blocks. At first they worked for 6-8 months, then lesser & lesser until a treatment only lasted a week or two. I had radio frequency ablation which made me feel worse. Failure. In 2009, living in Dayton, OH, I had spinal decompression by a doc in Columbus, OH. I turns out I have narrowing of the spinal cord in several places. The pain after the surgery lasted for 3 1/2 months, until I had facet block. another failure. I went to the top neurosurgeon in Dayton who showed me my images: osteophytes (bone spurs), spinal stenosis, my previously herniated disc bulging, enlarged ligaments in the spine putting pressure on the nerves...he declined to operate, stating he felt my acute problem was osteoarthritis of the hips.

Pain docs were turning me away, saying if injections didn't work, they couldn't (wouldn't) help me. No one would operate. My general physician wouldn't prescribe anything stronger than hydrocodone, which was useless. (I'd been prescribed Percocet off & on which helped somewhat) Out of desperation I drove 1.5 hours to a Kentucky suburb of Cincinnati to see a personal friend who is a rheumatologist. He prescribed several meds and referred me to a pain specialist he worked with whom he promised would not abandon me at the first or second procedure failure. That's what I needed to hear (and have). I underwent the practice's review process and was accepted as a patient. I met the doc, told him my story, and he was incredibly compassionate.

He immediately put me on a hefty dose of Percocet, promised not to abandon me - his group specializes in tough cases - and we discussed options. After undergoing a trial with a spinal cord stimulator (SCS), I decided to have it implanted permanently. I talked to people with SCS implants before hand and it seemed like a good fit. I'm glad I had the surgery. It does not replace pain medication, and they were up front about that, although it has decreased the frequency. If anyone wants to discuss SCS, feel free to contact me. It's made a big difference in my life.

So now I take Percocet (10/325) as needed, Tramadol on occasion, Robaxin (muscle relaxant), and I use my SCS. I have good days and bad days, but I can manage it. I walk almost daily and do home strengthening exercises. I used to participate in a water exercise class, and will be doing so again. I'm also in process of losing weight. Guys - that spare tire makes a big difference. When I was thinner, I had much less pain. After gaining, it's gotten worse. I also have a vibrating recliner, which is my happy spot.

So there's my story. I apologize I tend to be wordy. I'm on disability and have free time, so if you want to contact me, feel free. And if you're in pain and not getting adequate treatment, keep looking, keep trying! I had to go to a neighboring state to find the right doc, but it was worth it. This guy's a keeper.


  • Hi & welcome :)

    There are several people here with a SCS. I am just starting to look into it on my own. I want to know all I can learn about it before seeing a Dr regarding me getting one. I want to learn so much so I know what to look for and what questions to ask.

    I have been a member here for almost 2 years and I think I have only read of 1 maybe 2 people who had a scs and did not benefit from it for one reason or another.

    My recent research shows this is not to replace pain meds. I am currently on 75mcg Fentanyl patch per every 48 hrs and 8 5 mg Oxycodone per day.
    So is the SCS used to lower amount of pain meds usage?
    Or when pain meds are not working?

    I am confused if it is not to replace meds what it's intent is then?

    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • I have found this site very helpful to find suggestions, incites, information and support. I found this site shortly before my ACDF surgery 4 weeks ago, and I'm glad I did.

    4 level ACDF C4-C7 5-2-11, laminectomy & discectomy L4-L5 1/26/12, ALIF L4-5, L5-S1 12/10/12.
  • Well done for not giving up when surgeons and pain specialists in your State had given up on you. =D>

    I'm so pleased that the SCS in conjunction with the pain meds is helping you to control your pain.

    Please do post again and let us know how you're going.


    XLIF L2-4 20.8.15
    ALIF L4/5 2009
    Laminectomy/discectomy L4/5 2008
  • Thanks for the welcome :)

    Regarding the SCS, everyone will have a differing level of pain relief. My pain is constant, only the intensity varies. I'm opiod tolerant and pain medication only takes the edge off...when I am in severe pain, oral meds are not very helpful. Meds do help my osteoarthritis pretty well, so I continue to use them. The SCS does a few things for me.
    1. When the pain is low/mild, it can relieve the pain without medication.
    2. When the pain is moderate, it may delay how soon I turn to oral meds.
    3. When the pain is severe (which is frequent for me), I use it in conjunction with oral meds...the SCS fills the gap left by the inefficacy of the pain meds.
    4. During the day I keep it on pretty much all the time so when pain strikes, it doesn't come on as intensely as it would otherwise, and I probably notice it later than I would without the SCS humming.

    I hope this helps with some of your questions :)
  • I appreciate the greetings :)

    I wish I had found this site sooner, as it has a lot of good information. I took a tour of many forums yesterday, and the topics are pretty comprehensive! I hope my contributions will be helpful :))) I have lots of free time and I plan to visit here daily, learning and talking.
  • Welcome Andrew, I see you have seen just about as many pain specialists as i have. I am on my 4th pain dr but sadly i realised they all got there degree from the same book of"" how to treat pain for dummy,s."". Glad the scs is working for you. I had 2 trials that failed both times but i did get a good zapp out of it both times did not mater how many times i went back to have them change the setings on it. After having the trial for the pain pump and had spinal leak for 7 days of the trial i had enough torture.

    Happy to hear you was able to get your pain under control. For now i am staying with my pain specialist who at least has a beter attitude then the others. For now anyways. My new way of selecting a pain clinic is put my car in drive and close my eyes and see what clinic my car runs in to. We have so many here in the chicago area it seems.

    Best wishes ! Alex
    Flexicore ADR 2004 resulting nerve damage l4l5 Fusion 2006 same level, 2009 hardware removal with lami !
    2012 scs implant ,
  • Oh, those spinal leaks are torture. I had one for a few days after a CT Myelogram and it gave me headaches, dizziness, vomiting & bizarre dreams, in addition to what I was already dealing with. I never want to go through that again.

    I hope you manage to find a control for your pain. I would imagine in Chicago there's got to be good doctors, somewhere. I think there's a stroke of luck involved in finding the practice that's right. Hope you find that.

    I also have an advocate, my wife, which helps. I'm the strong silent type and don't communicate well (so I'm told). My wife goes with me on most doc visits and fills in what I forget to say & what she notices, especially when I'm too depressed to speak up for myself.
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