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    Pain after L5 S1 fusion
    monaj51 posted:
    Hello all, I was glad to find this community. I had L5 S1 fusion on 3/5/14. All was well up until about a week ago. I am now having pain above the surgery site and my spine feel very sore. Like I did something to hurt it. I was getting out of bed with the log roll and was able to stop using my walker. Now I feel like I need the walker again. And am having a lot of pain and trouble sleeping at night. When release from hospital they gave me Oxcotin, which I stop taking right away because of the way it made me feel. Did I stop meds to soon? Has anyone else experienced this before. Also my husband changed jobs and went from PPO to HMO now waiting on Referral approval to see back surgeon again
    bj1208 responded:
    Hi and welcome to the support group

    I had the L5-S1 Fusion done in 2/08. I had pains come back after my 3rd month post op and still have them to this date. I also just had my 2nd Fusion L4-5 done 12/13 and now have worse pains than before.

    I do have a couple questions for you. Are you still under surgeons care? Have you had continued pain since your surgery? Did your surgeon and or the PA go over the do's and don'ts for lost op care?

    If you are in pain then yes take the pain meds as directed. You don't want the pain to be so bad that you are chasing the pains with the meds as you will be miserable. The surgeon or PA should have gone over the No Bending No Stretching No twisting rule until you have been released from their care with a clean bill.

    When getting out if bed its best to use the headboard and the sheets to help pull you up. I still do this as it helps me to not twist. I use my right hand on headboard and left hand I grab the sheets/blankets into a tight ball and slowly lift up and let my legs hang over the side of the bed and slowly lift myself up.

    It can take up to a year or longer for fusions to heal and it's important to follow surgeons directions as you can re-herniate the site.

    If this pain us worse than before I would suggest that you make appointment to see your surgeon to be examined to make sure everything is intact.

    Please keep us posted what you find out.
    ~~ Click on my name or picture and read my story ~~
    ~~ Joy ~~
    trs1960 replied to bj1208's response:
    Listen to Joy

    I can add nothing to what she said!

    monaj51 replied to bj1208's response:
    Hi Joy thanks for responding. Yes I am still under my surgeons care. Just waiting for referral. Yes Dr went over dos and don't following them to the letter. That is why I'm so concerned about this pain
    bj1208 replied to monaj51's response:
    Hi again

    Don't be afraid to call or surgeon or his PA and talk to them about the pains. They will let you know if this us normal or if you need to come in to be examined. They way u look at it is it's better to be on the safe side.

    Keep us.posted~~
    ~~ Click on my name or picture and read my story ~~
    ~~ Joy ~~
    dovecom responded:
    I had your surgery 12/2010. Gradual improvement in mobility and pain as expected for 4 months. Then it was like I walked over a cliff. 100X increase in pain, unrelenting, burning, stabbing, aching. The fusion didn't take, had to have it re-done. Didn't fix the pain. Took me over a year to finally figure this out. Somewhere around 3-4 months after survey is when scar tissue finally forms.

    The thinking is that the paraspinal nerves get imbedded in the scar tissue and are irritated with every movement. The muscle spasms until it fails, then it triggers the muscle above which does the same, etc. I get rolling spasms up my entire back and the pain in my neck is actually worse than the fusion site. This may not be you. But for 20% of fusion patients it is. Dirty little secret they don't tell you. In my case I discovered I didn't even need the surgery in the first place, the doctor lied. The pain is unmanageable. You want to kill yourself. Get rid of all the guns in your house. Seriously.

    When your brain can't get out from under the pain, ever, it thinks bad things might be the solution. Get another surgeon to look at you and get a new MRI. Then get a good pain specialist. Surgeons don't know jack diddly about pain. GPs don't know jack squat about pain. Doctors don't know much about pain, honestly that was a shock. But a select few (Neurologists) do. Find a good one. Find one who likes to let you experiment. It will take time to find a drug cocktail that works for you. I also tried a pain stimulator implant but it didn't help. It won't help you either cause your pain isn't below the waist, right?

    I found a new drug called Nucynta in 2011 and it kept me from killing myself. But the pain was still awful. I read stories like this all the time. There are thousands of people going through exactly what you are. At one point I was on 6 meds. Being able to think and see clearly was a problem. Now I'm on 2 (tapering off Lyrica right now) and I get Botox injections in my back every 2 months. Botox has been a huge help. Eventually you get used to narcotics which means you're screwed cause there is nothing at the end of that except an implanted morphine drip which eventually you also get used to.

    Botox allowed me to scale back my Nucynta so that now I have wiggle room for really bad days. Sounds disheartening, I know. But what i have learned now after nearly 4 years of hellish pain is that you actually increase your pain tolerance, just like you increase your fitness with exercise. What I feel now would have done me in 4 yrs ago. 3 yrs ago I wanted to end it. The pain is the same now, but I now how to mitigate it, what worsens it, and how much I can really take. Start looking now for every and all resources you can find. Most of all, rely on your family.
    bj1208 replied to dovecom's response:
    Hi Dovecom - welcome to the support group

    Thanks for sharing your story.

    Yes I have been told that I have scar tissue especially after my first surgery (click my name or pic and read my story). After my first surgery I was doing very well, healing and reducing the pain meds. Then after my 3rd month post op the pains came back worse than before surgery - much worse.

    I know a few years ago my primary doc had a notice at the check-out desk talking about Botox Injections - however at that time it was only for cervical area related to migraines and it had not been approved for lower back pains. I see now that this is available.

    I know many insurance policies may not allow botox injections as they would consider this to be cosmetic. Doctors would have to submit documentation to the insurance carrier to ask if this can be given for the lumbar chronic pains.I worked in the insurance industry years ago and know how they work - plus I know my hubby's insurance would not allow this - it would be a fight between the prescribing doc and the insurance.

    Thanks for letting us know also about the medication you are taking. It sounds like it would be expensive - as most members are a cash patient (like myself) and would not be able to afford it.

    We do appreciate your story - you have listed quite a lot of valuable information.

    Keep us posted how you are doing
    ~~ Click on my name or picture and read my story ~~
    ~~ Joy ~~
    trs1960 replied to bj1208's response:
    I can add something. HMO should have a clause called continuity of care allowing you to bypass the referral. Call them and ask!

    trs1960 replied to dovecom's response:
    Dove com, your words are harsh, unfortunately they are so true.

    I would only add a pain psychologist is also a good resource to help you see light instead of dark.

    Glad you're in control.

    dovecom replied to trs1960's response:
    I'm sorry you perceive me to be harsh. I try to be concise and fair. If you are a cash patient then I can't imagine how tough this is. Insurance will pay for some weird stuff and not others which is also frustrating. They would have paid out $150k for an e-stim even though I found it unhelpful. But it took some doing to get Botox. I changed to another provider and they let the doctor dictate when i get injections, not some arbitrary schedule. I take 200 iu every 2 months. That's $1k just for the medicine each time. I also get traditional cortisone injections in my neck. The most expensive drug I take is Lyrica. At max dose, my Nucynta was about $500/mo and there's no generics. But Vivactyl is quite cheap and works quite well as do more modern antidepressants like celebrex (made me loopy though). I want anyone who is struggling to be able to find people who have been treated for the same issue, and to see the options. finding a pain specialist is key. I want you to know it can get worse, and better prepare for both. Find people to talk with. I also have a circulating ice water pad that helps and a heating pad that helps other times. Again, try it all. Be scientific in how you monitor various treatments and share what you learn. And keep anyone you love from having this surgery.

    Full body massage was the only time I ever fall asleep without ambien. It doesn't last long but in the moment it's great. Touch in general helps. Sex, if you still can, helps.
    trs1960 replied to dovecom's response:
    Sex always's even better with a partner =[:-O>

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