Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

12-weeks Post Op Lumbar Fusion at L5

RobinRRRobinR Posts: 67
edited 06/11/2012 - 8:50 AM in Recovering from Surgery
My back history is long and sordid, and many of you have probably been through the same thing, so I'm hoping that someone has some encouraging words for me.

I'm a nurse, and a little more than 2 years ago, I destroyed my back lifting a really heavy patient. I'd already been diagnosed with DDD in my early twenties, and often had flare-ups and knew how to deal with them. If they were too bad, I'd go for epidural steroid injections, which usually seemed to help a lot. On this particular day, I knew I had done a good job of messing up my back, but I was due to be off work for several days, so I planned to just go to bed, do my back routine, and hopefully would be back on my feet in a few days. Except that never happened. Instead, the "flare-up" continued to get much worse over the following days and weeks. Both legs had pain, weakness, and numbness, but I also had a new symptom...I had begun having urinary incontinence, which I'd never had before. My neurosurgeon sent me for MRI and he told me that I'd "really done it this time." I had herniated the disk bilaterally and he said it was one of the worst herniations he'd seen and it was time for surgery.

I had the bilateral laminectomy at L5-S1 in August 2008. Unfortunately, that was just the beginning of my problems as I had complication after complication and then ultimately wound up with a deep spinal infection. I had to get a PICC line and have IV antibiotics for 4 mths the first go round and then another 3 months a year later when the infection returned. I finished that last round of antibiotics in May of last year. In the process of all that, my spine became more and more unstable, so my neurosurgeon told me that I'd have to have a fusion, but that I had to be "clean" (meaning no infection) for at least 6 mths.

I finally had my fusion in November. After about 5-6 weeks, I really felt like my pain was better. I actually went out Christmas shopping with my boyfriend (my first outing since surgery) and did ok. I mean I was walking pretty slow and I wasn't able to shop long, but I was feeling really optimistic. Two days before Christmas, I went back for my post-op visit with my neurosurgeon. I told him that I was feeling really good and he was SO happy to hear that. He's a doctor who's very passionate about what he does and he just doesn't usually have complications with his patients. So I always felt like he saw me as his own personal failure because I did so bad after the first surgery and had so many problems. When I told him how good I was doing in December, I could tell he was absolutely thrilled!

At that appt, I asked him to take me off the Mscontin 30 mg, that I was taking twice a day. (also taking Norco 4x daily and Soma 3x daily) He was hesitant to take me off of it, but I insisted. After all....I felt great...no need to be taking morphine any longer than necessary. He suggested that we just cut the dose in half instead and if I didn't need it, I could just not take it. So I started taking the Mscontin 15mg but only once per day and my pain was bad again. But I refused to go back to the higher dose because I really thought I was on the mend and didn't need it anymore.

Well I went back to work this week. I no longer take care of patients because I just can't be on my feet for 12 hours a day and do all the physical activity that's required of hospital nurses. So I have a desk job now and figured it would be no problem going back to work.

My pain has been SO bad this week! The muscle spasms I'm having are brutal and take my breath away when they hit. Today was so bad that I literally couldn't get any work done because I kept having to get up and walk about every 15 minutes when the spasms would hit. I was ready to try and start weaning myself off the pain meds by now. I'm 3 mths post-op....I SHOULD be able to do that right? I realize now that the reason I felt so good at my first post-op visit is BECAUSE I was on the higher dose of Mscontin. I had my 2nd post-op visit last week and I told my doc about the increase in my SI joint pain, so he sent me to an ortho doc, who injected both of them this past Friday. I am seeing a small improvement now, but honestly, this pain, and these spasms I'm having while trying to work all day, are awful.

Now I'm beginning to panic a bit wondering if I'll ever be pain free. Will I ever be able to stop taking all these meds and have my life back? I know I'll need to wean off of them since I've been taking the norco for 2 years now...since my first surgery. And about every other week, I'll take a day where I can go without my pain meds so that I can gauge where my pain is. And so far, I'm not ready to come off of them. There's no way. If I stopped taking everything, I'd basically have to lay in bed all day and not move. That's no way to live.

For all you veterans out there....does the pain ever go completely away? Or is your back always screwed up once it's screwed up?

(sorry for such a long post)


  • Hi Robin,

    I think you're being too hard on yourself - if I'm reading your post correctly you're only about 3 months out from your surgery. I've read here on SH that you can liken fusion to cardiac or brain surgery
    based on the invasiveness of the procedure(s) that are done and it's definitely a long road to recovery. Maybe adding some additional meds like a muscle relaxant will help w/ the spasming. Do you have a good lumbar support @ work? Does heat or ice help at all? If heat is best, try the Thermacare patches, they're paper thin, generate warmth for hours and don't show thru clothing. Can the pain go away - yes, it can, but it takes time and you need to learn to be a 'patient' patient and allow youself the time to heal. There isn't a right or wrong way, it's the way that works for you. If you need pain meds to function, it isn't wrong to use them - as an RN you know that if pain isn't controlled it can escalate where it can be difficult to relieve w/ any narcotics, analgesics, etc. Please talk to your doc and see what he suggests, it sounds like you have a good doc who cares about his patients.

    Please keep us posted.

  • Thanks P....yes I'm sure I probably am being hard on myself, but I feel like I have good reason.

    A few months after my first surgery in 2008, my neurosurgeon turned over the management of my pain meds to my primary care doc. He said that I'd need to be on them until I could have the fusion because my pain was not going to get better until then. My PCP reluctantly has managed my pain meds for the past two years and it's been a constant battle every single month that I asked for a refill. When the time got close for me to have my fusion, he said to me, "Well you won't be needing pain meds for much longer now." Now I'm 3 mths postop and currently, my neurosurgeon is still managing my meds, but I know that will come to an end soon.

    I don't think my PCP will do it anymore. And I'm afraid that my pain isn't going to go away and I'll be stuck without anything or anyone to help. I feel this sense of urgency to be FIXED and PAIN FREE as soon as possible because if I'm not, I'm afraid I won't be able to work and take care of my daughter. My PCP makes me feel like a drug addict for asking for pain meds. He doesn't even seem to take into consideration that my back is REALLY messed up and I have very good reason to be in pain. (as I'm sure you ALL understand)

    Anyway...I'm just scared that my pain isn't going away and there won't be anything I can do about it. I was just hoping that someone out there might tell me that it DOES go away.

  • Hi Robin,

    Only another spiney can understand, and you have a whole bunch of good/valid reasons - you've been down a far more difficult road that many w/ the 2 surgeries and infection. Does the hospital where you work have a pain management doc and can you get in to see him/her? If they don't, get your surgeon to refer you to a PM ASAP. They'll understand where you're coming from and this way you won't have to deal w/ the PCP & his reluctance to cut scripts for you. From my own experience, I can tell the pain went away for me, it just took time.

    Stay strong,
  • There probably is a pain management clinic where I work, but I'm not sure where or which doctors are involved with it. I'd have to look into it and find out.

    I also wanted to be able to get off the pain meds, but each time I do a trial of doing without them, my pain is intolerable. I hate the stigma of having chronic pain, and I hate that after more than two years of being on the pain meds, my PCP still treats me like an addict. I have never asked for an increase. I have never taken more than I needed. In fact, I still write down every dose that I take because it helps me to manage them that way. I'm a nurse....that's what I do....I write down the doses. And according to my neurosurgeon and his nurse practitioner, I'm not on a super high dose. They told me that there are a lot of people out there taking way more than I am. So why, after two years, does my PCP still not trust me?

    Also, once I suspect that one of my daughter's friends stole some of my pain pills because I was short about 30 pills. Rather than tell my PCP and ask for a refill early, I rationed them so that I could get through until it was time for the refill. I knew he'd never believe that I wasn't the one who took them, so I never told him. It was really rough too, because I had to do without and I'm the one who suffered as a result.

    I currently take 8 norco per day. That's the dose that I've been on ever since shortly after my first surgery and the infection. That dose dulls the pain, but it never goes away completely. And some days are really bad and I probably could use something more, but I refuse to ask for it. Right now, I've still got the mscontin 15mg that I take once per day, (was given that script after this last surgery) but I've only got 2 pills left and I will not ask for a refill. It was originally ordered as 2 pills per day, but I decided not to take them that way. I figured that in the evening I could lie down and could do without the 2nd dose.

    The pain rules my life. So I don't live. I go to work and then I come home and lay in the bed and watch TV or play on the computer. I don't do any of the things that I used to enjoy and it's all because of the pain.

    Anyway, thanks for your response and I think I will look into pain management and see how that works. If I'm going to have chronic pain...that's one thing...but I definitely don't want to just give in to it and become completely disabled. I still need to work.
  • Hi Robin,

    Gentle hugs to you, hope it's somewhat better pain wise for you today. Also hope that you've been able to get info on or better an apptmt w/ a PM. Are you also journaling your pain levels, it can help the PM along w/ your dosing notes in figuring out what mix of meds that may work for you. When I was released to home post surgery I had percoset, valium, flexaril & 25 mcg fentanyl patch changed every 3rd day, worked very well on pain/spasming relief for me. As far as the missing meds, unfortunately a # of spineys here have had similar experiences, it might be a good idea to get a lock box to avoid this happening again.

  • I am sorry for all the pain that you are having after 2 years. You are very early out from your surgery. Please don't be too hard on yourself, it is a very long recovery.You have been through a lot in the past couple of years. I am currently waiting for a fusion, I too had an incident with a patient transfer last year.
    So glad that you found us here at SH. Welcome to the boards and look forward to seeing you here.
    All the best, I hope that you have daily progression with your recovery.
    gentle >:D< Karen
    >:D< >:-D< : Karen
    L3-S1 herniation and bulges, stenosis, mod facet,ddd,impinged nerves,coccydinia
    discectomy/lami July 2011-unsuccessful
    adr L5-S1 Feb 2012
  • I am a 51 year old athletic male and I just had an L5/S1 lumbar spinal fusion 10 weeks ago. I have two more weeks to go then the back brace comes off.

    The DDD was caused by extremely heavy weightlifting and bodybuilding when I was in my 20s and 30s.

    The first two weeks post surgery were the toughest. Extremely painful and difficult to get in and out of bed or even to roll on my side or scoot higher or lower in the bed. Very hard to get in and out of the car.

    After three weeks 90% of the pain went away.

    Now I only have about 5% of the pain from after surgery.

    About 10% of the pain I had before the surgery.

    I can actually stand up straight instead of stooping forward to relieve the pain from the pinched nerve.

    I am also a pilot and flew a plane for the first time a couple of weeks ago. A little tough to stoop down and do some of the safety checks.

    We'll see how it goes. There was a very heavy-set lady taxi driver that drove me last Wednesday when I went out of town for business. She recognized my condition right away. Said she had spinal fusion and she is 100% pain free now...and she said she sits all day long in the car. That was a really good report that it worked for someone I spoke to.
    L5/S1 Discectomy...20 years later L5/S1 Spinal Fusion
  • christibencchristiben Posts: 121
    edited 03/27/2015 - 1:51 PM
    I can totally relate. I had my fusion in December. Most of the pain is gone except the stiffness in the low back. I'mback to work at my desk job full time and it pretty much ttakes up all my energy for the day. I can't take the narcotic pain relievers because it clouds my thinking and I can't do my work while on it. Wish there was a good option. Just found out that I need a hysterectomy asap and am dreading more pain. Its currently putting a lot of pressure at the fusion site. Good luck. This is incredibly difficult but I'm hoping better days are ahead.
  • Topspeak - I just had a L5/S1 fusion 3 weeks ago. I'm glad to hear you are pain free. I was wondering if you had any leg pain after your fusion? I am having horrible outer leg pain bilaterally. It started 2 weeks post op. My initial post op pain wasn't as bad as you explained yours was, it was painful, but I was able to roll over and get up off couch and recliner. I was only on pain meds twice to 3 times a day when i got home and the script called for every 3 hours. Its the leg pain that is really bothering me now. My back feels stronger. I actually cleaned my house today for the first time since surgery. I never thought I would be able to clean the bathroom and mop my floors. I didn't run sweeper b/c I was told not to do that. Please let me know if you experienced leg pain at all in your recovery. Thanks.
    Kelly Karuzie
This discussion has been closed.
Sign In or Register to comment.