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Alif surgery l5/s1

KerriKKerri Posts: 4
edited 06/19/2014 - 5:52 PM in Back Surgery and Neck Surgery
Hi there! I am new at this stuff and just probing for some information. I have degenerative disc disease, multiple bulging discs, spondolytheosis, which all have caused scoliosis. I am a 28 yrs. old have a husband and two children 3 and 5. I have been a Nursing assistant for ten years. Which doc told me I will never be able to do again. If I can even work again. So my back hurts ALL the time no matter what I do! I can't feel my right leg most days and have awful pain in my right hip. My doc has put me on tramadol 50mg x 2every 6 hours and am taking neurontin 1200 mg a day and have had 3 epidural/steroid shots in past month with a fourth in a week and half. My doc wants me to have alif surgery to fix l5 s1 any information to the surgery/recovery process anything would be appreciated. Thank you and god bless!


  • with regards to ALIF surgery I can give you MY experiences [whatever I write you may have a totally different experience }here goes ..back in 1997 I had a L4/L5 laminectomy .it was due to a near fatal car crash and done without my knowledge as it was an emergency the consultant was the on call guy so I did not get to choose and I had no real knowledge back then anyhow .
    as it happens he did ;;;;too much ;;;and as a result it was only a matter of time until it failed and 7 years later it did .I had another L4/L5 AND S1 spinal surgery .that was a total failure and I was in hell for years later after looking for help {no one wanted to help after viewing the MRI scans I wanted ADR {artificial disc replacements } but my spine was not suitable due to the aforementioned surgeries ..so I ended up with the dreaded ALIF .{which is two operations in one ..if you think about it ] an abdominal and a spinal .my operation took around 5 hours and when I woke I was in pain beyond words I have since only experience pain as bad as that once before {when I have visceral pain last year and as yet still no diagnosis but it was horrendous } back to the ALIF it spent a week in hospital and for me it was the worst time in my life when I got to come home I spent the first 6 weeks totally unable to do anything I had no energy at all .my wife had to do everything for me roll on to the 6 month check up I am now able to walk and eat food {my appetite has changed since the ALIF} food I used to like I no longer do.. .at the 6 month stage my fusion has fused but I am still in pain and not able to sleep for more than two hours .for the next 18 months I tried everything to improve with my situation everything from deep relaxation to swimming/acupuncture /physio . TENS heat/ice BUT nothing helped [the TENS used to help before the ALIF}.I have been on and still am on a high dose of oxycontin for pain relief .what that does it take the pain and altered feeling that I have in my legs and feet from unbearable to just bearable but nowhere near pain free..its been 2 and half years since the surgery and today is my 2 and half year assessment [20th 06 2014} where I will be telling the spine guy how I have been for the last six months .my day goes something like this ..go to bed at around 1AM wake around 3 AM in pain come downstairs and take painkillers have a cup of tea and get on my recliner .I may sleep for another hour or two then pain will wake me again .then its shower time and then I am fit for nothing so its back on the recliner .and I will stay on there most of the day .that's about as much as I can do ..some days ..maybe if the pain meds are high in my and I have managed to find some reserve I may be able to go for a short swim ..but I find that on the days where I think I can do something I am swiftly reminded of how ill I am when the pain returned with a vengeance and knocks me off my feet ..due to the altered sensations in my legs and feet I have not been able to wear normal long pants as it feels like my legs are being crushed .so I wear shorts all year round .as a result I have no social or sex life {yes that area doesn't work any more and even if it did that last thing I want is any weight across my hips either way !..so as you can see my glass is half empty ..so you would think by reading this ..but its not I am still a positive person and I still enjoy the little snippets of life that I can enjoy .yes the spine problems have changed my life for ever and I am still learning to live with the new me ..its hard work !!.remember a fusion is done for spinal stability and not pain relief should you receive any pain relief then that would be a bonus and a not a guarantee if you can avoid such a massive surgery and have a more conservative alternative ..then I would be tempted by that as the ALIF is big and will take a lot of time to recover from ..yes you could end up like me but hopefully you won't ..either way don't expect an easy ride with ALIF .and good luck to you
    one last thing you may want to purchase a decent rise and recline recliner NOW as you will find it so handy even a life line post surgery you can lay in it if you need to as many ALIF paitiens carnt sit on a normal chair or a settee I need to be slightly back and not at 90 degrees when sitting with my legs raised ..otherwise numb /painful legs .and I can sleep better on my recliner than my bed {and that a high end rise and recline memory foam thing}
    good luck chose your surgeon well do your homework don't just have anyone and get a second even third opinion before you embark on potentaily life changing surgery
    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
  • I am so sorry you have had so many problems!!! That's awful! I still don't know what to do I go to give my answer if I want the surgery on the 9th of July. I am thoroughly researching! Thank you for your comment and I wish you the best!
  • ALIF041414AALIF041414 Posts: 4
    edited 07/01/2014 - 4:37 PM
    I had ALIF for L4/L5/S1 about 11 weeks ago. My hospital experience was good, with attentive nurses, a private room, which allowed me to sleep in peace (I did not request this, but my doctor did), excellent pain management, and 2 appointments each with their physical and occupational therapists before I was released 4 days after surgery.

    I also had home nursing and therapy visits for a few weeks; these were more helpful than I thought they would be, if only because it was nice to talk to people who knew what I had gone through.

    I'm not going to sugarcoat it -- it's major surgery, you'll hurt and it will knock the energy out of you for longer than you can imagine. Much longer! But I could tell almost immediately after the surgery that my usual pain was gone. I had pain from the procedure, though. The first 3 weeks were hard, but oxycodone on top of my regular fentanyl 25 patch controlled the pain. I do my best to follow the main rules, i.e., no bending, lifting or twisting. This was hard to do early on, mainly because it no longer hurt to bend, unlike before the surgery! My incision was glued together, and has healed fine, although it is totally ugly. The only "therapy" to date has been walking (I was doing better at this earlier on, before it got so darned hot), a daily half-hour spinal stimulator, and a brace. I no longer need the oxy, except when I overdo it. I still need the patch, though. The only complaint I have now is my sleep schedule is all messed up: it's hard to fall asleep, and then I sleep most of the morning away.

    I think the best thing for me was knowing I was OK with taking 16 weeks leave from work. This has taken a lot of pressure off of me. Just as importantly, I have had the support of my husband and teenaged daughter, where they take care of housework, laundry and cooking, so I'm not sabotaging my long-term recovery with short-term tasks. The house is a mess, but I have a "doctor's excuse" to not care!

    I first hurt my back 30 years ago, and have had back pain for 20 years. I tried everything before finally having this surgery. I was originally going to have surgery almost 2 years ago, but I wasn't mentally ready for it (I chickened out!). When I went back again in the Fall, I was definitely ready for the surgery, and I'm glad I did it. The surgery did aggravate a nerve in my thigh. Before the surgery, my right thigh had been numb for several years. After the surgery, that thigh nerve hurt like lightning, but it has been getting better by the week. I have an X-ray and follow-up appointment next week. I'm crossing my fingers, hoping there will be some indication of fusion!

    My only advice is to make sure you are mentally, emotionally and financially prepared for both the surgery and the LONG recovery time required. This is nothing to go into half-heartedly. Oh, and if you have the surgery, get a bath scrubbie on a stick, a "pick-up grabber stick", and an iPad. You should have a recliner, although I honestly never bothered to get mine out because I just use a leg support pillow and back pillow in bed (we replaced our memory foam mattress with a Sleep Number bed, which has been awesome) and on my sofa chaise.
    Take care!
  • LizLiz Posts: 7,832

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • it sounds like you have had a good experience .I read my post then read yours they are almost opposites ! I wish you continued success in your recovery ..my consultant has just discharged me after 30 months he had diagnosed cauda equina syndrome and arachnoiditis and says I will be in pain for ever {but I knew there before my surgery it was always going to be a gamble as previous surgeries had wrecked my spine ] I had an excellent spinal consultant for my ALIF I wish I would have had him following my MVA ! my life may have turned out different {pain wise} I would not change anything else !!
    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, Tony, my experience has been good so far, although every good week has been followed by a bad week, I think because I overdo it during the good times.

    I actually shuddered reading your account -- I hope you can get reliable pain relief. When you mentioned your pants hurting, it reminded me of nerve pain, which I've never been able to control with meds. I wish you the best of luck. Please take care of yourself, especially emotionally. Constant pain is exhausting, depressing, and I found that even people who love you eventually get tired of hearing "my back hurts."

    The difficult thing with back pain is not only can it be hard to pinpoint the source, but it can also have multiple sources, which makes back operations a bit of a crap shoot, compared to other operations.

    My back still hurts now, but it is a different pain, and I am hopeful it will subside over time. But I'm hanging onto my oxy prescription, JIC!

    I think ALIF was the right operation for me because my previous pain was from the discs (which are gone) and the facet joints (which are immobile thanks to the cages and pedicle screws). I am still concerned for the long run because I have scoliosis above the operation site, as well as I expect there will be added stress on L3/L4.
  • Hello to everyone. Thank you for all your comments on ALIF surgery, I have gained more insight about Post-ALIF surgery. Now I accept the fact that I MUST take thing light and easy till my fusion is completed. As Tony mentioned above, " good week followed by a bad week"....so true. I had my ALIF ( L4L5S1) about 7 weeks ago, the surgery was a success because my original pain was gone. I did my research about the different types of spine surgery and I had 3 consultations with three different surgeons....all 3 surgeons had different approaches to my ONE issue. I think I made the right decision to have ALIF but I didn't realize that the incision would be so long...6.5". Could anyone comment on the incision? I was told to do a low impact exercise to strengthen my back and abdominal muscles but, after I exercised, my whole body was in pain ( I don't take any Narcotic pain medication ). Any suggestion? Thank you and best of luck to all.
    Jessica Ling

    ALIF on 5/20/2014
    L4,L5 and S1
  • edited 07/19/2014 - 3:12 PM
    Hi Kerri,
    I don't know whether you have made your decision on the ALIF surgery yet, but I just wanted to say to you, if you do the surgery, Please take off the necessary time that the doctor tells you to!!
    I had the surgery last Sept. on the L5/S1 and I went back to my sitting dental job in just 2 weeks, very big mistake. I am 10 months post-op and have not had any real pain relief since the surgery. My surgeon said it takes "time" but he referred me back to a spine specialist in Jan. I have had 3 more injections with absolutely no relief and he is now wanting to do a discogram to see if he can pinpoint the pain. I am going to my primary care this week to have him order another MRI of my lower spine to see if anything new is going on since the surgery. I did 4 months of aqua therapy after surgery w/no relief and I do stretches as well. I still work, but am getting to the point that I may have to quit this job to be able to stop sitting for 9 hours a day. My life is absolutely no different than before the surgery, so please do exactly what the dr tells you after the surgery, I know now I should have taken off at least 6 weeks.
    I hope if you decide on the surgery you will have amazing results with no residual pain. Recovery is not the easiest, so don't be afraid to ask for help.
  • I had mine in dec. 2012, and at first it was a nightmare (ask Tony..he helped me through a lot of the dark days!). I was in bed for 4 months, then had to go back to work. I finally just got good relief a couple of months ago when I started on the Butrans patch. Now I am back to working out several days a week, working 6 hrs a day, and doing everything I did before. But yes, it is a long journey, but, in my case, it ended well.
  • Wow! Thanks to all who have commented!! My doctor and I did decide to go for the surgery! I anticipate having the fusion around January of 2015! *what an awful long time to wait* but I'm glad I have decided to go for it! As for now my medicines are not working very well and I have a new shiny silver cane. I have fallen a lot here lately which upsets my poor kiddos. They know mommy is going to hopefully be ok after surgery. It's just depressing right now
  • can be a very drawn out affair I think the best thing to do is let your body tell you when its the right time to do stuff .I was under no illusions that it was going to be a hard recovery I also use a recliner ..its be a god send as trying to get comfy on a normal chair or a sofa is a no NO I also bought a ;;grabber;;and combined with a high end shower grab rail and foot stool and grippy shower mat and raised anatomically correct toilet seat {yes they make them] has made my recovery a lot better than I think it would have been should I have not had all the bells and whistles I have found sleeping a problem ...but if I am honest its no worse than it was prior to the ALIF I find that pain tends to wake me around 3 hours after I have gone to bed and even though I have experimented with various bed times and different bedding and pillows and drug combinations ..nothing works .I suppose that I will just have to grin and bear it I can sleep better and for longer on my recliner .
    I have found that so many things have changed since the ALIF and I am still coming to terms with them when I last had an appointment with my orthopaedic consultant I asked him if it was normal for post ALIF patients to struggle with anything touching their legs things like bedding [ I know that certain bedding ...we have some fancy embroidered duvet covers really ;;;hurt me ..so we now use brushed cotton ..and I still have to stick my legs out of the bed I have not been able to wear anything close to the skin as the skin on my lower body from around the navel is very sensitive and almost feels ;;burnt ..I find that shorts help even water when showering can hurt !! but I need to shower .I suppose its just one of the many facets of ALIF I read that one person is doing very well with their recovery it's good to know that there is some light at the end of the tunnel
    will someone show me the light switch !!
  • Congrats on your decision! I hope all goes well.

    Make sure to get your body as strong as you can without hurting it, before you go. Core strength, good nutrition, all play a role.
  • Thank you all so much! I hope everyone is feeling ok!! I've decided to go for the surgery it will be in jan 2015 . My life is completely different now and I'm trying to learn how to adjust and deal with pain. ALL THE TIME! My meds have not been helping at all I feel like a sorry lazy bum now but I can't change what has now become daily life
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