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L5/S1 spinal fusion - 21yrs old - need advice!!

hey everyone I'm after any advice people can give me regrading spinal fusion surgery!!

A little about me - I'm a 21yr old female and have has random periods of severe back pain since I was 18, these would last 2 months max. I have always been really active and very into sport. due to my love of fitness i become a personal trainer and LOVED IT!! I trained myself for 2hrs everyday loved Olympic lifts and sprint training would have 5 clients a day + work the gym floor for a few hours (regular 12-14hr days) and loved every second!! then 8 months ago this all came to a stop I can't even do Pilates with out a lots of pain and being shattered after! I get pain consistently in my lower back, hip and sometimes into my thighs. I get numbness in my toes and my leg will randomly give way under me. I can't sleep because of it (can't remember the last time I went to sleep before 3am)

An MRI has shown I have grade 1 spondylolisthesis, minor disc bulge, disc degeneration and lots of scar tissue. I've been having physio for 7months with no change and I met with a consultant and they have suggested spinal fusion with decompression & laminectomy(not sure if the last 2 are just part of a normal fusion).

I don't know what to do?!? I want my old life back!!! I haven't really found much info on someone my age getting the surgery for spondylolisthesis (lots for scoliosis but that tends to be multiple fusions at a higher levels so im presuming that dramatically changes the pain levels/rehab/recovery)

any advice welcome!!!


  • LizLiz Posts: 7,832
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    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • Hi. I'm sorry you're in so much pain. Back pain is by far the worst. I'd had back pain growing up that got worse as I got older. Then at 24 I was in a very bad car accident where I was hit on my side at 55mph and things got worse from there. I tried everything to help and nothing did. Apparently the accident accelerated my DDD that runs in the family. Back in September I tore something too packing and the pain became even more unbearable. I had the pains down the back of the legs and I could barely lean forward without feeling like my spine could just snap in half. I cried daily and became so irritable and depressed. My quality of life was compromised. I decided I had too much life to live to deal with this amount of pain anymore. I was tired of always canceling plans for pain. November I went and saw a new ortho dr explained everything. He did X-rays and MRI my l4 was gone l5 almost gone. He tried injections and no relief. Dec 18 I had a discogram to confirm problem area and Feb 18 I had spinal fusion done anterior. All pain I had before surgery was completely alleviated. It was the best decision ever. Healing takes awhile but I'm 5 weeks out and done everything the dr said and at my 4 week checkup they were thrilled with how well I'm doing. I'm an emt so it's going to be awhile before I can return to my job but I'm willing to be patient to make sure I do. You're not going to get better overnight but I think in time you could return to what you love and without pain. You're a lot younger than me and I think if the pain is as bad as you describe do what you need to to alleviate it. You've got your life ahead of you don't miss out because of pain and before it gets worse.
  • thank you so much for chatting to me! I've felt quite lost recently because no one i know can really understand what's its like.
    I'm really glad to hear your doing so well!! it sounds like u definitely made the right decision. how have u found the pain from the surgery itself? and how are u finding managing with the restrictions they give you afterwards?

    I think the main reason I'm considering the surgery at the moment is I want my old life back (or as close as I can get). I miss being able to do the things that most people my age dont even think twice about. to go out with friend for drinks and dance until stupid o'clock in the morning, I tried this a couple of weeks ago and lasted 20mins on the dance floor before spending the rest of the night watching. this sounds really pathetic but at 21 I want to be able to go out with friend without having people think I'm being miserable and without wanting to cry from the pain!

    I was told the injections wouldn't be any use and they believe the majority of pain in coming from the scar tissue.
  • No problem!!!! Unless someone has experienced this kind of pain they will never understand how debilitating it can be. Your spine is the center of everything and if it's messed up life is not the same.

    I know I definitely made the right choice. I know I have an opportunity of pain free life again. The fact all pain is gone I feel so blessed. I had it done anteriorly and find the incision was the most painful during recovery. I was in the hospital for four days and when they got me up the second day the pain was unreal. I felt my "new" disc and when the bone graft came from. I got so nauseous. But I didn't give up and they did well at managing pain. I bought a cane and a grabber. The grabber is SO helpful I use it still since I can't bend still. I borrowed a walker with wheels and a seat I've found sitting in it to be much more comfortable and it's great walking around neighborhood too if I get tired. I got the rails for the toilet to help lower and raise myself. My husband works a lot so it's been me and my puppy during recovery and I did it alone its mainly the mental battle to push yourself. Getting in and out if bed first 2 1/2 weeks was hardest. But rest is most important. Let your body rest and heal and don't overdo it and you'll be where I am. I'm a believer I will have my old life back and I can't wait.

    I know how you feel. I think if you stay strong mentally and stay positive going into this you've got it in the bag. You're a physically fit person you should do just fine. Have a great support system with you know you can have your life back. I waited a long time and ignored it but at 30 finally said it's enough. We want kids soon and I want to be able to give them the life and love they need and I need to move.

    Injections are hit and miss. If they do a discogram it does narrow everything down and is very painful. But it reassures all the problems too. If you ever wanna talk I'm here and understand. Pm me if you like. Things will get better.

  • You are young at 21 to have a spinal fusion, but for spondylolisthesis it is not that unusual.
    I had a lumbar fusion with decompression and laminectomy for a grade 2 spondylolisthesis 3 years ago. I was told before my surgery that it is often given to young girls so that they can go on to have children without awful pain in a pregnancy caused by the weight of the baby pulling the slip forward. A decompression and laminectomy are not the same as the fusion, and mean that more bone is removed to take pressure off the nerves.
    Now, I was in my 50s before I had my surgery, but it certainly really helped with the awful bilateral sciatica that I was getting and also helped a lot with the lower back pain.

    Because I have a lot of degeneration throughout my spine, I have needed to go on and have a neck fusion.

    I have spoken to quite a lot of young women (similar in age to you), who have had a successful surgery and they go back to their lives and we don't hear from them again.

    For me, the pain after surgery wasn't as bad as I had feared and I felt that it was doable. It is a long recovery but I certainly felt it was worth it to be able to get back to enjoying life again.

    I was also told that the injections wouldn't help me because I had gone beyond that.

    Do ask any other questions that you think of. There are lots of friendly people here who will be happy to share their experiences. Take care :-)
  • baggers290691bbaggers290691 Posts: 22
    edited 03/27/2013 - 3:47 AM
    thanks, everyone is so nice on here! it's nice to know when I'm having a freak out about things that this is here and everyone's so understanding, I means a lot!!!

    one of my main conserns about living with spondylolisthesis was if I got pregnant what would happen. my consaltant has reassured me that once I've had the fusion I could have a relatively normal pregnancy (he did say I would probably have more back pain than most but it would be manageable compared to without the fusion)

    it's be so encouraging to hear other people's stories and experiences. it's also great to hear people being a positive about fusion surgery (I've read a lot of negatives) its put my mind at ease!!!

    I've never had any sort of surgery before and one of my main conserns is the being put to sleep. how have people found the anesthetic? what can u remember from the experience? how does it feel?
    i keep having dreams where I'm awake during the surgery and can feel everything!! I know that's crazy put I really have no idea what to expect.
  • Hello im 31 now I had a spinal fusion at 28. I would suggest this surgery but only after having a CT mylogram done and also a discogram. The reason being to insure your pain is coming from this disc they are recommending the surgery to take place on. I was injured got authorization for surgery right away Dr. Scheduled me. I did more research on him not the doctor I thought he was. I changed dr to one of the best in Ny and glad I did it took 6 months of follow ups and tests and retests before he would even consider performing the operation on me. All went great lower back is 90% improved. But my friend had the same operation didn't listen to me and has had three surgeries on his s1l5 1 for fusion 2 to correct mistake that was made during surgery only to go to my dr after 2 years and be told after the mylogram and discogram it was the disc above which he is still waiting for the operation to fix that. Sorry if this is a bit confusing I hope it's helpful don't rush into a surgery and get the best Dr. You can you'll be surprised that Drs who operate on the elite also operate on regular folk.
    I'm still in pain 80% of the day but from muscle spasms from three other herniations I had received in an accident same on that ruptured my S1L5 . I hope this helps your young don't let any Dr talk you out of these tests trust me.
    HSS ny lower lumbar fusion .... l5s1
  • I was given a shot into my IV and I woke up in a recovery room. No pain but the room was nuts dark with some lady screaming scared my wife big time turned out she had a bad reaction to the meds. She didn't know where she was she had to be restrained no one could sleep or rest because of her. In a room out of 15 people all recovering from surgery she was the only bad reaction and she was in her 60s. Next day she didn't remember anything not even acting like a maniac.
    HSS ny lower lumbar fusion .... l5s1

  • I think it is true that carrying a pregnancy with spondylolisthesis can be very painful. The doctor who diagnosed me was amazed that I had carried three pregnancies and not been diagnosed. She asked if I had back pain when I was pregnant and I said yes, and awful sciatica too but I thought it was normal!!

    Before my surgery I had only had my tonsils out when I was 3. That was a very long time ago!!
    I was very scared about being put to sleep too. It was not nearly as scary as I had expected.
    They put an IV into my hand (I was/am needle phobic - so that was horrid too). They said I would feel hot or cold (can't remember which!) and then would start to feel woozy. I didn't feel anything in my hand, but did start to feel woozy and the lights on the ceiling seemed to move. That was it. I was asleep.

    When I woke I was in the recovery room with a nurse by my side talking to me and telling me it was all over. They wheeled me back to my room where my husband and daughter were waiting for me. I had a patient controlled IV for morphine so my pain was well controlled. I seemed to have some reaction to that and had slurred speech and pin point pupils, which concerned them, so after about 6 hours they took it away from me promising that I could have it back again later. I never had it back and managed with just Paracetamol and Diclophanac!! Amazing and the nurses and doctors were surprised at how well I coped without heavy duty pain killers. They put it down to the fact that I had been getting a lot of pain beforehand. Now my experience is not as bad as some here, but I think it is doable. If the pain is not being well controlled, do let them know. You should be able to cope with it!

    Take care

  • thanks for the info!
    I've had a CT done about 2 weeks ago but I'm still waiting for the results. my consultant doesn't think it's its so much to disc but the fact they I have a lots of scar tissue surrounding the nerves and they would have to do a laminectomy to remove a lot of to problem and so would need a fusion to secure my spine. when I next meet with my consultant I will ask him to confirm that they are sure where the pain is coming from.

    I have a massive phobia of needles so that doesn't help with my anxiety about the surgery and I've never spent more then a couple of nights away from my partner! I was told I would be in hospital for about 2weeks this seems like a really long time!! how longer have people been spending in hospital after the op? (I'm from England not sure if that it makes a diference)

    I am still having physio and will be right up to the surgery so that I'm in the best condition going into the op. I'm still hoping that the physio will start to work and I won't having to have the surgery!!!!
  • Hi, I am in the UK too, and had a 2 level fusion of L4 / S1 mid February. I was in hospital for only 2 nights, perhaps with hindsight it was not enough!
  • jellyhalljjellyhall Posts: 4,373
    edited 03/30/2013 - 7:03 AM
    For my lumbar fusion I was booked into the hospital for 5 nights but only stayed for 4. After my cervical fusion, I was in hospital for 3 nights although didn't actually go home until almost bedtime so nearly 4!

    Baggers, doing the physio right up to surgery will help with your recovery. I used to do daily exercises and walking to try to keep my spine in the best shape possible. At first I was trying to avoid surgery but slowly realised that was not going to be possible and I just had to find the courage to face it. They told me that at least part of the reason I had such a good recovery was due to all the exercises and walking I had been doing. I must say that my fear of needles is not so bad now. Nothing like spinal surgery to get you over that fear!

    Very strangely, I found that walking briskly was easier than walking slowly. I asked a surgeon why that was and he told me it was because when you walk briskly you engage your muscles so your spine is much better supported. I suggest that anyone struggling to walk at least gives this a try.

    Where in the UK are you located baggers and Nick? I am in Sussex. :-)

  • Nick_MurphyNNick_Murphy Posts: 171
    edited 03/30/2013 - 1:49 AM
    Jellyhall, I'm in Essex, although I had my surgery at the London Independant Hospital in East London to coincide with my 2 surgeons schedules and cross over of hospitals :-)

  • How are you getting on with your recovery?
    You are still early out for a lumbar fusion, but hopefully you are starting to feel the benefit from it now.

  • To be honest I feel like I plateaued at about 3 weeks, maybe even took a backward step. I'm mainly suffering sciatic pain on first getting up, which lasts about an hour before subsiding. Thereafter I'm not too bad, get occasional twinges when moving around but manage to get in daily walks of around 3 miles in about 50 minutes which feels good. I've tried many different approaches to this morning / waking pain to no avail, just appears to be an hour long series of spasms I have to go though each day! I see my surgeon this coming Friday, hope to get X-rays and confirmation hardware is still all in place and beginning to fuse, and possibly a change to my medication to overcome these issues. From what people have told me, my current Tramadol and Paracetemol combo is lightweight given the surgery undertaken
  • I'm currently 32, and I had a grade 2 spondylolisthesis (the variety that's common in young dancers & gymnasts) along with a host of other things. Diagnosed over 5 years ago with the mess, and tried every conservative treatment out there (tried injections as well as they were recommended). I just had a minimally invasive TLIF with rods, screws, & a cage to fuse L5/S1. Being fit pre-surgery will make your life a lot better....especially dips & squats as those will help you move yourself both in the hospital and while you try to navigate your new non-bending world :-)

    Personally, I'm glad I waited on one hand (my surgeon didn't want to jump to surgery too quickly as a lot of folks live with spondy and other spine stuff without too much issue), but definitely waited too long as I have some nerve damage and signs of spinal cord injury that would have been great to avoid. I was at the point where I had trouble walking from handicap parking to my office and was using a wheelchair for any distances greater than that.

    Anesthesia isn't that bad. If you're worried, they can give you anxiety meds to help out :-)
    1/16/2013 Minimally invasive TLIF with rods, screws, and cage on L5/S1 joint to treat grade 2 spondylolysthesis, pars defect, degenerative disc disease. Dealt with chronic pain & nerve issues since at least 2007.

  • I think it does happen after spinal surgery that things can flare up again after we are into our recovery.
    I certainly found that as I started to feel feel better and move and do more, I caused a flare in my pain.
    It is a learning curve as we learn what we can and can't do. If I found myself back in pain, which was very frustrating, I would ease off what I was doing and generally things would improve again after a few days.

    The daily walking you are doing will really help your spine, muscles and nerves. My physio told me that walking was the most important thing I could do to aid my recovery. I have also read that it can help to stop scar tissue attaching to the nerves.

    I was also surprised at how little pain meds I managed to take after my fusions.

    Good luck on Friday. :-)

  • hey guys, been crazy busy with work so haven't had chance to update and check the site!

    Nick - 3 miles in under an hour seems good compared to some people I've spoken too at your stage in recovery! how r u pain levels at the mo? how did you get on at the consultants?

    I'm meeting with my consultant on the 25th to discuss my CT results. I have a massive list of questions for him after speaking to people on here, so hopefully I will have a really clear understanding of what's actually going on!

    I've decided to confirm the surgery and at the moment the waiting list is 6months so that will give me till October to give physio I really good push and to hope I will wake up and feel great (hoping for a miracle lol). if physio is showing signs of working by then I will delay the surgery for 6months so keeping fingers crossed.

    also I brought a TENS machine this week only used it a couple of time it seems to take the edge off the pain but I by no means would rely on it instead of proper meds! but if it means I don't need a tablet every now and then I'm happy with that!! feel like I should rattle when I walk.
    I've also booked to see my GP to sort out my pain meds as he's got me on some old school tablets no ones heard off (indometicin) and they are not touching the pain.

  • Nick_MurphyNNick_Murphy Posts: 171
    edited 04/10/2013 - 2:01 PM
    Pain levels are ok I guess, saw my surgeon last Friday and he was far more positive than I about my progress and suggested I'd set my sights too high. He prescribed me Pregabalin to take at night and said they should start to kick in after a week and hopefully address my main pain which is on getting up. Fingers crossed that will work and I can make further progress.

    Hope you get your meds sorted, can make such a difference when you get the right ones and the appropriate levels. Reminds me, when my wife collected my prescription for the Pregabalin, we didn't notice that they were only 25 mg instead of 75 mg, and probably wouldn't have noticed either. Thankfully the lady from the pharmacy knocked on my door at home to apologise and provide the correct ones :-)
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