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New Here....what's normal after fusion

AnonymousUserAAnonymousUser Posts: 49,731
edited 06/11/2012 - 8:23 AM in New Member Introductions
Hello everyone....

My name is Samantha, and I'm 29 and have had 2 back surgeries. The first was an emergency laminectomy in '06. I had terrible back pain after that, even after "conventional" therapy, PT and shots at the pain center. I finally sucked up my fear of fusion, because I wanted to get better. I had it on 5/12/08. That was THEE worst pain in my life. I my L4/L5 done with a cage, and rods and screws. The doc was going to do S1, but it autofused itself.

Here I am, 4 months later not knowing what to do with myself. I'm not allowed to start physical therapy just yet, and I'm still in my back brace. My restrictions are: No NSAIDS, no lifting, bending, twisting, no work, no PT, limited sitting, and my favorite, no housework :(

I am still in a crapload of pain. My newest being nerve pain, or at least I think it is. They gave me Neurontin, cause my left leg feels tingly, and my left side of my back has REALLY bad muscle spasms.

I don't know "what's normal", where I'm "supposed" to be at this stage of my recovery. The doc sure as hell doesn't tell u anything. I wish back surgery came with instructions.
Hell, I didn't know when, or if I could umm....have marital relations, so I called the nurse.

I'm back on the Vicodin, which kind of pisses me off. I feel like if I'm on pain killers, I'm not getting any better. I guess in a perfect world, fusion patients are supposed to be off their narcotics one month post op.

I'm thinking my muscle spasms are from 1)being in a restricting back brace for this long, and 2) from not being allowed to do PT.
I would just LOVE to go back there, and do warm water therapy.

It's getting to me mentally having so many restrictions, and not being allowed to work, and basically not have a life. Not to mention I got denied on my Social Security case, and it takes a year and a half to get an appeal trial.

I'm just having a hard time right now. I have really bad cabin fever, even though I do get out to go erranding, and go to the doc and stuff.

Sorry this was so long, that's my story in a large nutshell.

Feel free to say hi, and let me know about your spinal fusion experiences. :H
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Comments

  • :) hi and welcome to the forum! we are here to offer you support and answer what questions we can. you should be looking at starting your pt very soon. when does he say you can? i am sure you are going a little crazy but you need to keep busy. even little things can make up a day for you. i am sure someone will come along who can better help you. good luck and i hope we see you progress. Jenny :)
  • I actually have not had a fusion but I have had a failed back surgery. I think that it is really hard to say what is normal progress because what one persons normal may be could be totally different for you. If you are not satisfied that your doc is caring for you properly is there anyway that you could get another opinion? I think that docs may hesitate to give extensive written post op instructions because everyone is so different in their healing time. Maybe there is no set time that you should start therapy and it is based on each individual. try to be patient and follow the docs orders so that you might have the best chance of a successful fusion. Please keep us posted on your progress.
  • Hello Samantha, I had a fusion L4-5 on August 5, 2008. I had been doing really well but am having a setback currently with new right sided pain. My NS said I would be out of work 6-12 weeks (I am a nurse). That is a joke. Even before my setback, I am so stiff and still have spasms and low back pain. Restrictions of no BLT, only sit 15 minutes per hour, weight limit 10 lbs, walk as much as tolerated, and I can go to water PT (on my own). Now I am waiting to find out what to do about this new symptom. This fusion recovery is definitely a very long complex process. I can definitely relate to the cabin fever. Getting to the pool has helped me on that one, gives me somewhere I need to be each day. This board is an excellent site full of information and support. It has been a blessing for me in my recovery to meet people who have been through this and can offer their insites and an ear to listen. I am sure you will find it likewise. Take-care and see ya round here on SH. Check out the Back/Neck Surgery Board. There is lots of fusion topics there, Sue
  • THERE'S NOTHING NORMAL AFTER SERGURY I HAD L5-S1 DONE AND HAD SAME SYMTOMS ALSO WITH LEFT FOOT NERVE DAMAGE ALL I CAN SAY IT TAKES A LONG TIME TO HEAL TAKE 1 DAY AT A TIME GOOD LUCK MOSTLY
  • I really feel badly for you. Your postop course does not sound at all normal. I had similar surgery, but with cadaver bone, and got to take the brace off and start PT at 8 weeks. The increased activity really helped the pain go away. My surgeon had me walking a mile a day from the first day after surgery, and increased it to 2 miles after the 8-week visit. Walking helps a lot! So did the exercises the PT had me do. When the muscles that support the body's core get weak, like from being in a brace for a long time, pain tends to increase.

    Do you know just why you are still in the brace after so long? Did your surgeon say fusing is not taking place? At what intervals post-op did you see your surgeon?

    You might want to call your surgeon's office and discuss your postop concerns with his/her nurse, and decide whether you need to see your surgeon again. Doing nothing will cause further atrophy of your core muscles, and will delay your recovery.

    I'm really sorry that you are having these problems. You'll find a lot of support in these forums. There's one for Spine and Neck Surgery, and one for Pain Management that may be particularly helpful.

  • Your recovery most likely is completely normal for you. You need to remember that recovery depends on many different factors such as what sort of fusion was done, your pathology before you had your operation, why your surgeon did the op etc. I had PLIF L2- L3 nine months ago. Recovery for me has been long, slow and painful. I have been back at work 6 weeks now, I wore a back brace for 12 weeks and I am still on pain meds now. My fusion looks excellent and my prognosis is good, my surgeon believes it will take me 18 months to recover. I was unable to walk before my operation so I have had a lot of work to do post op. Listen to what your Surgeon tells you and give your recovery lots of time. Robba that is great you have done so well but you cannot compare the recovery of a TLIF to a PLIF and the are so many different factors that influence recovery times.
  • What's the difference, and what is TLIF and PLIF?

    How do I know what kinda surgery I had? Hmmm, maybe I'll look at the operative report when I get home.

    Thanks so much for your reply. This place is so great, and I've only been here a few days. I don't feel so alone, and that's really helping me not feel like an oddball.

    It's just so hard, ya know? Pain, and not being able to do stuff has totally changed who I am, as a person.

    I'm trying to not let the pain, and surgery define who I am, but it's really hard sometimes. I feel like the "old me" doesn't exist.

  • I don't know what those acronyms mean either. I had a L5-S1 fusion in 2005. My pain was lessened for a few months and then it started to get worse again. After almost 4 months out of work, when I told my Dr. that I still had pain, it was just different than before my surgery, he said if I was 50% better than before, it's considered a success. He told me I expected too much if I thought I was going to be my old self again.

    That put me into a bit of depression. I lived with this pain for about a year, and then went to a PM Dr. She tried everything from Lyrica and Vicodin to PT, and shots. Nothing worked so she sent me on to another PM Dr. This one suggested a spinal cord stimulator. I went ahead with that. He also put me on Kadian instead of vicodin, which is supposed to be stronger and give me longer relief. It is extended release morphine, and neurontin because lyrica made me gain 20 lbs in the matter of 2 months. Yikes.

    So, here I am a year out from my stimulator being put in, and I still have pain. I have scar tissue around the nerve I guess, and that is the problem. I was told that they don't go in and remove scar tissue because it would just cause more. I try to ignore what pain I have, the stimulator does help, although I'm still in pain, I can crank up the power and get some relief. I still take the pain meds. I feel tired almost all the time, and I'm sure that is from the meds. I have been taking a spinning class 2x a week and walk trying to get back into the shape I was before I hurt my back.

    I think the dr.'s should tell us straight up that the surgery may fix one problem, but it will not ever make you the person you were before. I have been on pain meds for so long I don't think they even work anymore. I have nothing for the as needed pain, and that is what is depressing. I'm sure you can relate to the pain you get in your buttock and leg, and even with the kadian, I just wish I had something to take to knock it out when I over exert or something.

    Anyway, sorry so long. I don't want to be discouraging or anything, some people do end up being just fine. I think it's rare. I would say as soon as you are able do what exercises you can without violating your restrictions and strengthen your muscles. The stronger your abs and back muscles are, the better off you'll be.
    Good Luck!!
  • Hi,

    I know everyone is different and you have to listen to your doctor. At 8 weeks, I returned to work after having an anterior fusion of L4/L5 with cages. I didn't have the bone graft, which I've heard is most painful for longer. They used the synthetic protein on me. I started PT at 5 weeks, doing stretches laying down and riding a stationary bike with a seat with a back on it.

    Granted I'm still having pain and pretty stiff alot, but I can't imagine being in a brace that long and not being able to get out and go and do for 4 whole months.

    Good luck, and if you feel like you are at the point of needing PT, ask your doctor for some sessions. At least, you'd be working your hamstrings and stomach muscles with stretches. The muscle spasms are the worst.

    Does the Soma help you at all?
  • Hmmm, seems like the 4 month mark is common!
    I can TOTALLY relate to everytyhing you just said.

    I know my pain is NOTHING like my pre-op pain. That was just baaaaaaaaad-bad enough to scare me into a fusion.

    This post-op pain is totally different. I know that I'm 50% better then before, but still....I'm definatly not the same person I was before I had back problems, and that fact is depressing. I'll watch sports on tv, or even watch people sitting on their butts on the lawn in the summer, and just wish I could do that. I mean, even now...we don't use a computer chair, my fiance puts the recliner in front of the computer for me :)

    I guess we have to re-invent our post-op selves, and not let our backs define us (easier said then done, I'm not even close to there yet). I mean, this "new" me...the me that doesn't work, or do housework, or carry groceries is not making me very happy. I discourage myself all the time.
    No wonder I need an antidepressant. It's hard as hell to have a chipper additude when you're in a crapload of pain.

    I can't wait to go to the doc tomorrow, to see if he'll wean me off my back brace, send me to a PM doc, and finally give me the clearance to go to PT. I TOTALLY need to go back to pool therapy!!

    Thanks again :)
  • }:) Hi. I agree with everyone that each of us have pain differently and recover differently. I had a laminectomy first and then L4/L5 fusion (360 with all the bells and whistles). The worst experience of my life and a real hard trip back to my new normal life. I was an elite athlete before so was in pretty good shape but I could not even walk at first. I did not have a back brace and before I went to PT I walked and walked and walked. Not far at first but I gradually was able to go longer distances. I hate walking but when it became the only thing i could do it was great. I am also a swimmer and got back in the pool as soon as I got the ok from the surgeon. Being weightless is wonderful. Things deteriorated further in my spine and I ended up with L1-L5 fused 6 months after the first fusion. Again it was an awful 5 days in the hospital and the same slow recovery. At least I had been able to do PT between the surgeries so that helped. Again walking as much as I could tolerate and back in the pool as soon as I could. I was pain free for a few months (except for the bone graft site on my hpi which still hurts) and now am having SI joint issues which I understand are common, the SI joint being the articulating joint closest to the fusion. The pain is pretty bad and I can't sit. I will be having a steroid injection into the SI joint. Definitely if things are not going as you expect/hope/whatever a 2nd opinion is always valuable. We are all in unknown territory when we go into our first or even 2nd fusion and it doesn't get much easier after. Everyone reacts so differently. The more people you can talk to the more you realize there are a lot of us suffering and that there are lots of ways to deal with things. Good luck.
    L4/L5 laminectomy, L4/L5 360 fusion with instrumentation, L1 to L5 fusion, L5/S1 fusion w/ disc replacement, left and right SI joints fused.
  • Welcome to these forums! I am sorry to hear you have such a bad case of cabin fever - must be hard to deal with so many restrictions.

    I would encourage you to find out what is a normal recovery expectations for your particular diagnosis and surgery - you can do a lot of that research on Spine-health's articles. For example, you will learn that bone heals (ie creates a fusion) better under stress, so activity and exercise is usually encouraged a brief period after surgery to help create a good healing environment for the fusion site.

    Here is an index of surgery articles if you're interested:
    http://www.spine-health.com/forum/back-surgery-and-neck-surgery/spine-healthcoms-top-surgery-articles-videos-and-information

    Hope this is helpful for you , and hope you can get back to pool therapy soon too!@
    Kind regards,
    Stephanie
  • I'm looking at a three-level lumbar fusion and I'm hoping for some relief, not just more pain. Well, I suppose I could make it if I had half the pain I have now. I can't walk more than a few blocks without my leg buckling and jabs of horrible pain in my back and down my leg. This from a woman who has walked two of the Breast Cancer 3-Days! (20 miles a day for three days). I am so depressed to think I may have to spend the rest of my life like this. I truly hope you are allowed to get to PT soon and that you get better quickly once you get there.

    Linda
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • PLIF means the surgeon went in from your back, and the more your spine is exposed the longer and harder recovery is. So be really careful comparing yourself to other people. There are different types of fusions and different degrees of what is preformed by the surgeon. A long scar down your spine indicates you had a traditional open fusion.
  • Felicity,
    Great words of caution that you bring up - there are a ton of different fusion types, each with its own pros and cons, and very different levels of surgeon skills and experience, all of which play a role in the chances of achieving pain reduction, and the amount of healing and recovery.
  • Yeah, I have a nice big lower back scar :(

    He did go in through the back.

    I get discouraged because these last 3 years of back pain and 2 surgeries has ruined my life. I'm only 29
  • Don't let my experience scare you.

    I am better then before, when I couldn't get off the floor!

    If it needs to be done, then I hope you have a really nice, skilled surgeon.

    I only had the surgery as a last resort, after a failed laminectomy...and MANY flare ups.

    I just got the go ahead yesterday to go to PT, YAY!!! No more back brace either, and I'm THRILLED!!!

    I'm thinking that 3 days of warm water PT will do me good!

    Good luck to you, you can message me anytime if you want to talk about your fears and concerns

    Samantha-aka Bionicsammers :)
  • It is very difficult, for much of the time I felt exactly the same as you I was in my thirties when I had my fusion. I felt I lost everything meaningful in my life. But slowly I realised I hadn't, I started to see the world differently and I started fighting hard. I try to set myself up for success and to be realistic about expectations. It will get easier for you, think you are lucky you are recovering with a 29 yr old body that is a massive advantage over many ones. I think the surgeons do not prepare us well for what exactly recovery involves!
  • I know that three-level fusions aren't generally recommended and I'm now 54 years old. I'm single and have worked hard all my life for all I have. I'm getting so close to retirement, only a year and a half away, and I want to start enjoying my life, instead of everytime I move feeling like I've got bone grinding on bone or something down at my tail. The pain is unbearable at times and I've got 3-day pain patches plus percocet. I can't imagine what the pain would be like without the meds. I guess it is time to do the fusion. My surgeon seems really nice and I appreciate that he wants to do further xrays and scans to see exactly what he's getting into before he jumps in there. I've seen all the minimally invasive ways they can do fusions, but I suppose they do that more when they just do one level. I'm praying I don't have a huge scare, but I just want most of the pain gone.

    Linda
    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • I forgot to say I'm glad to hear you're out of your brace and can start PT. That has to be a big relief!

    Linda

    3 level spinal fusion, L3/4, L4/5, L5/S1, November 2008. Stiff, but I can walk.
  • These are acronyms describing two surgical approaches to a lumbar fusion. Which one a surgeon chooses depends on the patient's diagnosis and anatomy, and on the surgeon's training and preference. Here are links to illustrations of the procedures. I don't thing there are substantial differences in recovery time between the two. My sister had a PLIF at L4-L5, while I had a TLIF at the same level. Her recovery was uneventful, and at least as quick as mine. Different surgeons, in different hospitals.

    http://www.cshs.org/9037.html

    http://www.cshs.org/9036.html

    Hope this helps, Best wishes for a quick end to your pain.
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