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10 months post op L4-S1 360 fusion & pain still super high

Wondering if maybe I am stuck this way. Pre-surgery I was on morphine for pain, but main reason for surgery was losing feeling in feet. I've followed all doctors orders. I've had PT. I no longer have foot numbness and leg pain, but back pain is excruciating. EMG and myelogram/CT scan show no nerve compression, yay! Still ridiculous debilitating pain. Cannot tolerate pain without meds. Quit meds and just suffered for eight weeks, hoping it was from narcotics changing pain signals, receptors. I am climbing walls with pain, unable to function. Will be meeting with pain management doc to discuss options. Has anyone experienced this? I am a 44 year old female and have small children. Lost job, too. Advice? I now think back pain is real (not from desensitivity of narcotics). Believe I may have waited too long for surgery (six years of conservative treatments). Ideas of what to take for my chronic pain. Will discuss with doc, but want info from people with my same problem.
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Comments

  • http://www.spine-health.com/forum/announcements/spine-health-announcements/welcome-spine-health-how-get-started

    10 months out is still early in whole fusion surgery recovery process. It can take up to two years and even a bit more before you really start to see where you are going to wind up. Are you in physical therapy or aqua therapy to help ease and stretch the muscles since your fusion was a 360? If you aren't you probably should be........the issues with cut muscles and ligaments can contribute to ongoing pain, unless you really work hard at recovery and restrengthening those muscles and stretching them out again.
    There is probably always going to be some residual pain, since the fusion creates one longer bony segment instead of the flexibility of having multiple smaller bony sections that move , bend and flex with is....
    I would strongly encourage you to talk to your doctor about getting into some rehabilitative physical therapy, and possibly some aqua therapy as well to help strengthen and stretch out some of the muscles again.....and maybe a muscle relaxer might help as well
  • Big Daddy JimBBig Daddy Jim Posts: 10
    edited 04/08/2014 - 8:11 AM
    LelaOliviaM....that is so so sad. I am sorry to hear about your continuing pain. I realize everyone is different and we heal in different stages. I am 2 weeks post-op and no pain remaining and off of the meds totally, like I said everyone is different. I just wanted to stop in and share my "good vibes" with you. I just hope that your pain management appointment only produces GREAT results. Take care of yourself.
  • dfhughes57ddfhughes57 Posts: 32
    edited 04/15/2014 - 1:47 PM
    Hi LelaOliviaM
    I had a L5-S1 fusion last July my pain is still worse than before the surgery although I am able to work I have difficulty sleeping at night. I realised how much pain I had when I started to reduce my pain meds which had been doing a great job of managing my pain. I have heard you can continue to improve for a year or more so hoping this will be the case with me, I still have panic attacks just thinking about having to live with this pain for the rest of my life but handle it better when I stop focusing on the future and take things day by day. When I see a post like Sandi's above this really helps and gives me hope that things can and will continue to improve over the next year or so, helps give me a more upbeat and positive attitude.
  • it has been 13 years since my first fusion, have had 4,and i still have chronic pain and still take meds and see a pain doctor.
    jon
    I have 4 fusions from L5-3, the latest last May '12 where they fixed my disc that broke.They went through my side this time. I take 40 mg of oxycontin 4x a day and 4 fenatyl lollipops 300 micro gms 4x a day.
  • I had a checkup yesterday. My neurosurgeon told me that at ten months, I shouldn't have anymore back pain at all! I told him I did, and asked what could be the cause. I was sure to tell him the surgery was a success in that I can feel my feet and walk without falling down. Bit, I still have horrible pain if I sit in a chair too long, I can go about 45 in a good chair, and I can stand for about 10 minutes. As the day progresses I just get worse and worse. He said it is one of three things1) permanent nerve damage since I suffered for six years before succumbing to surgery, 2) X-rays this week showed fusing, but he ordered a CT just in case the fusion is fully formed, he will be able to tell, and 3) it could be strain on level above (L3-4). He ordered a Facet Injection for that level. He said if I get any relief, then it is most likely that. :-(. All options seemed bad. Hoping I am just a slow recoverer like some of you above. I appreciate all your responses. Thank you Sandi, our neighborhood pool opens 5/1 so I plan on getting in and doing some strengthening exercises. My PT hasn't helped a bit. I am walking or using elliptical every day. I am moving around house trying to manage my family, but I am just super limited and need a lot of help. Thanks for all the warm wishes.
  • Hi, I had L4S1 discectomy on April 1, 2014. At 3.5 weeks post surgery, suddenly began feeling new symptoms of sciatic nerve pain (pulling, stretching like a rubber band) and my NS basically is doing same as yours: he has a theory and is taking steps to figure out what he truth is. First I'm starting with prednisone type meds to fix swelling, in case that's the cause. From there, an MRI to see if there is a new stressor or a re herniation....Lela let us know what the surgeon says. Good luck.
  • youngatheartyyoungatheart Posts: 42
    edited 04/25/2014 - 7:20 PM
    I am also 10months post op and have been pain free until a few days ago when I began having what feels like a pulling type of pain with a strange sensation on my right leg. It mostly bothers me when I get up from sitting or laying down. I actually posted this topic earlier but no responses yet.
    I don't know what symptoms I would have if there is a screw that came loose or maybe its a new issue since I have degenerative disc disease.

    I'm. Considering calling my surgeon Monday

    As for your issues did you have PT? I hope you get some relief soon
  • I had my l4-s1 360 in July of last year. I was pain free until I went back to work after 3 months.
    My therapist and I discovered my back pain was scar tissue and SI joint pain.
    I had SI problems for years before the surgery but they got worse.
    I wear and SI belt but I rarely take pain med's.
    The scar tissue pain went away the more I excercised.


    Is you pain muscle pain, is it where your surgery was?
    I would suggest trying a different PT, a good one can help you discover what is causing your pain.

    99/00 L4/5 & L5/S1 herniation
    2001 L5/S1 microdisectomy age 25
    severe DDD at surgery level
    2011 pars
    2012 RFA L/3/4/5
    7-02-13 L4/5 l5/S1 360 fusion ALIF PLIF
    DX spondylitis , DDD, scoliosis, and slight kyphosis
  • I am 9 months post TLIF and I go to a pain management center for care.
    L5/S1 TLIF July 18, 2013
    4 Screws 2 Rods and BMP
    Post surgery L4 Dermatones
  • Regarding the narcotics, did you stop suddenly or wean off slowly under direction from your doctor? I haven't had a fusion and can't really comment on that but I think many of us have wanted to go off meds to see what our baseline pain is. To get an accurate picture of your baseline pain, the drug must be weaned slowly and it may be some time after you are off it completely that you can really say, "this is my natural level of pain". The reason is that going off the meds can cause rebound pain for a while. Kind of like if you take sleeping pills every night for a long time and then stop, you'll sleep poorly for a while, perhaps worse than before you began taking them.

    It also sounds to me like your neurosurgeon has given you high expectations and that is problem. He told you you'd be pain free at 10 months, that time has come and you are not so you feel that something is wrong. What I have read here is that recovery from this surgery can be very slow, up to two years even. Don't give up hope that you'll get better just yet. Results from surgery vary a lot. All the you can do is follow your surgeon's orders on how to help your recovery. PT, pacing, avoiding certain activities, staying positive as best you can and continuing to manage the pain that you have now. You have been playing this game a lot longer than I have so I'm sure you have an idea of things that help you and things that don't. Good luck. Six years in pain is such a long time and I really feel for you. I hope you feel some improvement soon.
  • Just remember, our surgeries were done to stablize our spines. Pain relief is a bonus. My suregon told me 12-24 months for the full fusion recovery.
    L5/S1 TLIF July 18, 2013
    4 Screws 2 Rods and BMP
    Post surgery L4 Dermatones
  • this was my 3rd spinal operation I have had surgery front and back and I am in pain all the time and dependant on narcotics just to keep the pain at a level where I am not screaming .most patients don't realise that a fusion is done to stabilise the spin and any pain relief is a bonus and not a guarantee .I am afraid to say that if you are needing narcotics to control your pain ..you will more than likely always need them ..post surgical pain of the spine is very difficult to control hence sites like this one ! .I have done ten years of pain management and tried TENS and all the other conservative treatments but the only thing that helps is rest and painkillers .good luck
    tony{UK}
    1997 laminectomy
    2007 repeat laminectomy and discectomy L4/L5
    2011 ALIF {L4/L5/S1}
    2012 ? bowel problems .still under investigation
    2014 bladder operation may 19th 2014
  • Yes, I weaned off meds under pain mgmt help. I just needed to know where I was at. I continued popping Advil and Tylenol, but no narcotics for 8 weeks. I have been in PT multiple times, and with two different groups recently, because it always makes me hurt more. It hurt more with both. I had increased meds during last stint with PT then decided to change my plan of action. I was dismissed from PT anyway (they said I know everything to do, I just need to keep it up at home) and I went off meds. I have religiously walked since my surgery. I've built up to three miles level. I am also able to do an elliptical with low/no resistance. I have been doing the exercising 5-7 times a week. Even in pain. I hear a "click" or piping sound when ai walk sometimes, quite strange. My PT said that they had worked through a lot of my scar tissue. I can feel the difference in scar tissue pain, muscle pain, and bone/nerve pain. It is definitely the last one. I just don't know if it is bone or nerve. My osteopath (yes, at age 44 I get to have one of those, lol) says he firmly believes it is the L3-L4. Facet. He examined me and thinks my NS is on right track. I saw my PM doc yesterday. He will be performing the facet block next week. He examined me as well, and agrees with my DO and NS. My fear is, what if they are right. Crap, another surgery? Ugh. The last one was hell. I am gonna just stay positive, keep walking, sitting down and hugging on my kids, and moving forward. What else can you do, ya know?
  • SpicyFuschia said:
    Just remember, our surgeries were done to stablize our spines. Pain relief is a bonus. My suregon told me 12-24 months for the full fusion recovery.
    Spicy, I agree with you whole heartedly. My NS said presurgery goal was to stabilize me so I can walk with out falling everywhere. At that time he said pain relief would be a bonus, 50/50 chance. Since then, he tells me I should have no pain ??? That makes me discouraged and feeling a bit crazy. I am definitely more stable and very very thankful for that. But the pain thing, I am confused as to why he changed his tune. I even asked him, he said in my case I should have no pain. He wouldn't tell me why. I did cry all the way home. Since then, lots and lots of people, doctors, etc, have said what I am experiencing is normal.
  • backache99 said:
    this was my 3rd spinal operation I have had surgery front and back and I am in pain all the time and dependant on narcotics just to keep the pain at a level where I am not screaming .most patients don't realise that a fusion is done to stabilise the spin and any pain relief is a bonus and not a guarantee .I am afraid to say that if you are needing narcotics to control your pain ..you will more than likely always need them ..post surgical pain of the spine is very difficult to control hence sites like this one ! .I have done ten years of pain management and tried TENS and all the other conservative treatments but the only thing that helps is rest and painkillers .good luck


    tony{UK}
    Tony, I've reread your post a few times. I appreciate your candid comments. I am so sorry you have constant pain and require meds and rest. I am also reassured, as strange as that sounds, that what I am going through is "normal". Nothing like feeling like you are all alone and nobody understands, or has ever experienced this. I hate that anyone had, as this really stinks. I met with my pain guy last week. He is going to do my Facet Block at L3-L4 on 5/9/14. He said he thinks I am a candidate for a patch, etc. He told me I've fought the good fight, if this doesn't work, he will come up with a good pain management plan that keeps me as functional as possible. He said he wants me to start coming to terms with my situation. He doesn't think I will be able to return to work for quite some time, if ever. He said to work towards small goals like getting through the day at home somewhat functional, before even considering working. That definitely is perspective. I've been blessed with an understanding husband. He's got someone coming in to deep clean house every month, he's encouraged me that childcare for my preschooler is okay, he's encouraged me to give my teenagers extra chores to help out. What is so sweet is they understand too, and help out so much. Despite my pain and misery, I do feel blessed. I hope you get help too. Take care.
  • I am 3 1/2 months post 360 lumbar fusion. S-I joint - L-4-5 fused and 2 artificial discs were implanted. I also ended up having scoliosis and the worst spurring, plus numerous annular tears. WC kept making me try Radio frequency, back stimulator trial, ESL injections, and finally an osteopath.

    By the time the surgery took place, they told me my L-5 nerve was "frayed". they had to sew it and wrap it in something to help make it grow back.

    I had ZERO back pain up until the 3 month mark, and the ONLY PT he told me to do, was walk.
    Once I began walking with a cane, since all my toes on the left foot are numbish, but the big toe has is pretty dead.
    I think that is whymy balance is off and I need the cane.

    He acts like it is still too early and that the nerve needs to grow more.
    I understand all of that. I am worried it did not fuse, now that the S-I area is painful most of the time.

    I feel discouraged and beaten down.
    They want me off the meds, but I am dealing with a damaged nerve, and 3/4 of a left foot.

    He is not doing a CT scan until 9 months. That is when I will find out if it fused or not.

    "For we walk by faith, not by sight"~ Corinthians
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