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spondylolisthesis grade 1 l5 s1 please help absolutely terrified

Posted , 14 users are following.

carla28825
carla28825

Hello,

This is my first post so do forgive me if I am talking out of term in any way.

I am 40 and have grade 1 l5 s1 spondylolisthesis. When I read forums, all I see is people having to be on painkillers, fusion surgeries that don't work, people who can not work, have children (pregnancy) and so on because of this condition. I am so terrified I will end up in a wheelchair or without a social life. There is so little information about the condition online. Please, please, can someone give me some hope that you can live with this condition, perhaps by doing exercises, yoga, pilates etc? Please tell me I can avoid surgery, have a pregnancy to term without complications from spondy. I feel so alone. I hope all of you are having a good day.

 

2 likes, 57 replies

57 Replies

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  • andrewclapp1
    andrewclapp1 carla28825

    Posted

    Hello, I am 37 years old with 2 small children.  I also have spondylitis L5 with a slipped disc trapping nerves in my left leg.  My doctor offered me physio which for me was no help, I also had pars injections in my lower back, the injections helped for a few weeks but that was it.  I was then offered surgery.  Like you are, I was very nervous and spent many hours researching this, what the fusion meant and trying  to understand how I would feel after such an operation.

    I agreed to the op which took place in November 2014 and I am on week 6 of my recovery. I feel great.  Every day there is a slight improvement, I still have a way to go but so far I'm really pleased I agreed to it.  Prior to the op my surgeon asked me to take up pilates to build the core muscle structure, this has deffinitley helped and is something he has encouraged me to rejoin next year.

    As far as pain killers go, my op meant going in through my stomach to remove the damage disc, then turning me over and going in through my back to fuse the vertabrae, I was off all painkillers within three weeks.  I haven't had any painkillers since then.  I know everyone is different but I guess that is my point.  

    I think my turning point to agreeing to the op was thinking about the different things in life that I currently can't do which affect the quality of my life style.  For me this included walking my dog, picking up my children, running and cycling, sleeping, no active holidays or events etc.

    apologies for the rambling, but hope this helps. Good luck with your decisions.

    • n8ster
      n8ster andrewclapp1

      Posted

      That is great . I had a fusion similar  to yours on l3 and l4 but also had a laminectomy for stenosis . I am at 6 weeks also . They went through my side over by my ribs in my back though . I know a lot of people are afraid of the operation but myself like you decided that if I repair it I may have a better life and if I don't I know it will only get worse .  I think if people just need a fusion consider it. They are a lot better at it now than they used to be .I try to walk a couple miles aday and it really helps !
    • andrewclapp1
      andrewclapp1 n8ster

      Posted

      Likewise, I try to move around and as much as I can and I do see progress everyday :-) 

      I working towards my milestone of next May when I can get on my bike trainer and build the strength back up.

  • carla28825
    carla28825

    Posted

    Hello everyone,

    I think I have to reply to everyone in one reply smile it is easier smile I have just gone to the GP and got a mild anti depressant. I think winter has a lot to do with it. It is half the battle to conquer back pain.

    I would like to appologise to those of you who had fusion surgery. I really did not mean to hurt yoiur feelings or sound negative. I think one of the reasons why I am so afraid of fusion is people telling me about the domino effect, you fuse one vertebrae and with the extra strain the others get in trouble too above and below. Do you have to check for problems every year after doing fusion? Do you need help after the first 4 weeks with personal care? Do you feel the hardware in your back if you touch it? Did you do minimally invasive surgery? Did you develop spondy in adulthood or as children?

    I am asking everyone because it is easier than answering individually. Do forgive me for asking so many questions but I want to know everything before I consider surgery so I can prepare myself if I have to.

    I would love to do pilates but once I mention spondy, people shy away from me. I have done core stabilization exercises. I wish thee was some pilates dvd I could do at home. I am going to try yoga too.

    Once again, I want to thank everyone so so much for being so kind to take the time to answer  me.

     

    • UK-Ven-medicate
      UK-Ven-medicate carla28825

      Posted

      I dont think you offend anyone first and formost its a terrifiying time and everyone will understand it can be hard too.

      In answer to your questions:

      I was diagnosed at aged 18 and I am 38 now. I have been thru a number of treatement and pain management routines.

      I havent had fusion yet, I saw a surgeon who explain there are to apporach from front or from behind. Anteriorily ( thru stomach ) i was told the the cage wouldnt hold on L4/5 S1. So it wasnt not an option. Posteriorly I have abnormal blood vessels and also a twisted nerve / spinal cord proable due to spina bifida.

      Im not sure if you can feel it as I ahavent had the operation, but when I asked myself its really only obvious post operatve and you get used to it.

      I was told it was a 50/50 risk in my case of success and not damage or make things worse. But if I was to have it done it would be key hole surgery. In the menatime my surgeon suggested injections and a review after that

    • n8ster
      n8ster UK-Ven-medicate

      Posted

      I just had a cage put on the 3-4 lumbar . And he put some type of spacer in between the two vertibrates and also bone that is supposed to fuse together . On my surgery the doctor went through the side of my back instead of through the stomach . No sure if it is something new or not .
    • andrewclapp1
      andrewclapp1 carla28825

      Posted

      Don't apologise, no hurt feelings here, I know how stress it is trying to get all the information you need to make the right decision that suits you.  Not easy.

      To answer some of your questions, I have an appointment with the surgeon next week on my 6 week check-up so I can let you know more about the fusion in terms of checking for problems etc in the future.

      You asked about personal after care, I was pretty self sufficient after week 3 but again this varies on the individual.

      At the minute I feel something in my lower back, but not a painful 'something'.  I will find out next week if this the normal feeling from now on.  But it doesn't hurt and most of the time you don't notice the back is fused, I can bend and move normally.

      My surgery was anterior and posterior surgery, the damaged disc was removed through my stomach which reduced damage to my spinal cord, then the vertabrae fused through the lower part of my back.  I was up and out of bed the next day walking around (slowly and with care of course). 

      I don't know how my back damage was caused, my surgeon said it's usually something seen in gymnasts or following a trauma injury, neither in my case.  It is possible that it's something I was born with but again I couldn't be sure.  When I had my children they were both big babies (10lb 4oz) and I believe this was the final straw on my back as the trouble worsened a lot after my second child.  But again, this may just be in relation to me and my circumstances?

      Ask as many questions as you like as that was what I wanted to do before agreeing to surgery, in fact I was talking myself in and out of surgery right up to the day of the op, it would have been nice to ask questions and gain an understanding from others in a similar situation.

      Hope this helps.

      Debbie

    • UK-Ven-medicate
      UK-Ven-medicate n8ster

      Posted

      Where you given a risk aspect ? I am hugely disappointed as you can imagine.
    • n8ster
      n8ster UK-Ven-medicate

      Posted

      I have to say that I am extremely lucky . I live in the san francisco bay area and the doctor I found is up on the latest procedures and actually helped teach as well . They also did some stem cell treatment to improve the process . So with this surgeon it wasn't I don't know if it'll work , it was more of this will work . I think checking out your doctor is as important as all the other decisions . So older doctors like the older surgeries which may have been improved upon . Doctors have been doing these surgeries for a long time and there are a lot of new and better ways to do it .  I am very happy with my result at this point it has been about 6 weeks and most of my pain is gone and I can feel my back being more stable .
    • dawnylou68
      dawnylou68 carla28825

      Posted

      Hi Carla

      Firstly you haven't offended me either we've all been there and it is frustrating the lack of information available the U.S. sites have a bit of info but their medical service is nothing like the NHS and they seem to be so more advanced!

      glad u went to the doctor, progress Eh.

      i don't know either what caused mime but it started when my son was about 3 and he is 22 now. It came and went over the years and I managed by wearing those heat patches to get me throu a day at work. I've always worked in a office so the sitting has probs made it worse over time. 

      However we also did a great deal of renovation over the years and humping rocks and allsorts in the garden. 

      Mine came to a conclusion in Jan 13 when I woke up and couldn't feel my feet, however it had been severe acute sciatica since oct 12. I would be bent over and shuffling for 3 wks at a time did use a chiropractor which helped a bit and in turn I managed to continue working, however when I couldn't feel my feet that was it. It went from worse to awful and the rest of my story is on here somewhere LOLS! My surgeon said I had 85% chance of being a great deal improved but with my other probs I think it's early days yet. Keep posting we got a nice group of us now I'm similar circs. When I was told that I was having the PLIF I couldn't find anyone in same situ at first but there's so many more peeps on here now xxx

  • carla28825
    carla28825

    Posted

    Hello everyone,

    Debbie, Jim, Dawny and n8ster thank you so much for the support you are giving me. It means the world to me. I am so glad you are doing well, despite the problems you are going through.

    If you don't mind, could you keep posting your progress with fusion please? It will make me feel better for one knowing you are doing well and second less frightened if I have to do it.

    I have been reading a little more about spondy, apparently, for it to progress from a grade 1 to a 3 for instance, you would have to have a pretty nasty fall. In a sense, I think mine is degenerative, my grandmother had spondylosis but she was never too disabled by it. If she was, she never told us. I know it is a different condition but probably having a family member with it made mine appear too.

    I remember once simply bending down and feeling my back crack, I never paid too much atention, me being me, I thought it would go away. A chiropracter told me subsequently that I would have had the chance to fix it  if I went to him in the first three weeks.

    Debbie, may I ask you if you don't mind, were you given special advice for giving birth given the spine problem?

    I am going to try the programme yoga for lower backs, it was developped by arthritis research uk, and you can go to classes all over the country train with a teacher and after you are given a set of yoga poses to do as well as a book.

    I would love to do pilates but I am not sure what to do, because there are no classes near me. I wish there was a set of dvd's I could do. I love exercising, love going for walks but I am afraid of spasms. I know it seems silly but I can be walking down the street all happy, all of a sudden I  get this awful spasm, if I don't have somewhere to hold on to, I literally double up.

    Other days you would think there is nothing wrong with me. I am not sure how to get rid of spasms besides exercising I really do miss going for long walks.

    I'd better stop, smile my husband doesn't call me train on a track for no reason, it is a consequence of being an aries I think smile I hope all of you have a great night and once again thank you so much for the support.

     

  • emily58659
    emily58659 carla28825

    Posted

    Hi I know this was posted months ago but I'm in need of the same advice. I have grade 2 and can't decide if to have fusion surgery. I'm Petrified if I say yes it'll go wrong. No pain killers work for me to ease the lower back pain or pelvis pain. I'm on a high dose of nerve pain meds to help with the sciatic symptoms down Both legs. Ive just had 9 months off work sick :'( went back last month and im struggling already. I've been desperate to talk to other people with this problem!! Any advice I would be so grateful. Did you have surgery in the end x

    • andrewclapp1
      andrewclapp1 emily58659

      Posted

      Hello

      I felt exactly the same, terrified of having the op, scared of something going wrong or worse, dying on the operating table.  I think I drove everyone around me crazy with my worries but you need to try and keep it in context.  If the pain and problems you suffer are affecting the quality of your life or decisions on what you can do then consider the op.  You can research the surgeons and reassure yourself with their competence, I was very lucky, my surgeon was amazing.  I had the op in November last year, I went home on crutches as I had a weak leg.  The first few days were tough but within 2-3 weeks I was off the crutches and walking around.  My back is amazing now and I am so pleased I went through with it.  I have got my first CT scan in June to check its fused properly, fingers crossed it's all positive.  I've had an x- Ray and those results were great. Best of luck with your decisions x 

  • andrewclapp1
    andrewclapp1 carla28825

    Posted

    Hello

    I felt exactly the same, terrified of having the op, scared of something going wrong or worse, dying on the operating table.  I think I drove everyone around me crazy with my worries but you need to try and keep it in context.  If the pain and problems you suffer are affecting the quality of your life or decisions on what you can do then consider the op.  You can research the surgeons and reassure yourself with their competence, I was very lucky, my surgeon was amazing.  I had the op in November last year, I went home on crutches as I had a weak leg.  The first few days were tough but within 2-3 weeks I was off the crutches and walking around.  My back is amazing now and I am so pleased I went through with it.  I have got my first CT scan in June to check its fused properly, fingers crossed it's all positive.  I've had an x- Ray and those results were great. Best of luck with your decisions x 

    • emily58659
      emily58659 andrewclapp1

      Posted

      Thank you so much for replying! Had you tried steroid injections first? My quality of life isn't great, I have to think about my back every second of the day, some days I think I can cope with it and think I'm over reacting over days I decide that's it I've had enough! I work as a maternity care assistant doing 12.5 hour shifts and it kills me. I love my job and have applied to do an access course in September so I can do my nursing but I'm thinking there is no point as my back won't be able to handle it. What grade was yours? And do you have any other problems, I have moderate disc degeneration at L4 AND L5. I worry if I have surgery how my partner would handle having to take over my house/kids routine . Ahhh so much stress .x
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