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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

    You poor thing, I remember all those thought patterns, they drive you mad.  I had physio first (didn't work for me), then accupunture (also didn't work for me) then steroid injections (ouch!!) this worked for a month or so, then I had the op.  

    When the surgeon removed my disc he said it had almost gone, worn away. Mine to was spondylolisthesis of l5, s1, not sure of grade.

    my daughter was only 4 and son 7 so like you I was worried about how to cope etc, everyone was amazing, the kids really enjoyed helping me too.  

    I was back at work after 6 weeks, feel fantastic now, have very few occassional twinges mainly in my hip now, but nothing in my back like before.  For me it worked so well x 

    I totally understand how you feel though, it's a big decision, it's a major operation x 

    • emily58659
      emily58659 andrewclapp1

      Posted

      Ah I feel like I'm talking to my mirror image lol, you sound so similar to me. My son's are 4 and 10 but I also have two step daughters who are 10 and 14 so life is hectic. My youngest starts school in September so does free Me up a bit at home but I'd still need so much help. I worry about money too arh! ! My surgeon said 6-8 weeks off but my job is quite physical so I'm wondering if it would be more. I feel like my other half is fed up of talking about it and if I have a rough day at work I feel I can't talk about it anymore. How long did it take you to get a diagnosis? I had years of doctors fobbing me off saying not much can be done for bad backs, wasn't until I had a horrendous flare up last June they finally referred me to a specialist but even he wasn't convinced, said he'd do an MRI for my peace of mind. He was shocked when I got the results! So glad it's worked for you I totally know what you went through x
    • andrewclapp1
      andrewclapp1 emily58659

      Posted

      Ha, it's such a tough time.  I drove my husband crackers talking about it too, mainly about whether to have the op or not.  Now I've had it done, I can see how much it was restricting me, I'm only 6 months in and be to be careful not  to lift heavy stuff and do anything strenuous but the results are great,  my husband is always saying I can't believe the progress you have made.  I was lucky and had full pay from work so for me the financial side was a concern as such.  Someone at work said to me 'if your children wanted to book a skiing holiday could you go?' .......... No I couldn't because of my back, then I started to think about all the other things I couldn't do with them because of my back.  That really gave me the push to sort it out.  I was terrified though, I did sneak some final au-reviour letters in my bag as I was so scared of something bad happening.  

      Its a massive milestone.

      i am in the UK yes, are you? I'm in Devon. 

      X

    • emily58659
      emily58659 andrewclapp1

      Posted

      Yes I live in Brighton, the turning point for me was when I lightly ran to my car with my eldest and he laughed and then said " I've never seen you run mum" it was heartbreaking and another time more recently, my puppy was licking my ear and I was really giggling and he said " I've never heard you laugh like that mum" it's so dreadful I was so upset. What sort or symptoms did you have from it? Do you mind me asking what you do for a job? I have had the security of full pay on sick leave but mine is for 6 months then six months half pay, my problem is I've just had 9 months off sick so need to work a lot longer to reinstate my full pay sick leave, do you work for the NHS? did you have awful nerve pain down your legs etc? I take pregabalin (nerve pain meds) to block out those symptoms. Thanks again for chatting with me it's been a godsend xx
    • andrewclapp1
      andrewclapp1 emily58659

      Posted

      Wow not too far away :-)

      my back was playing up but worsened when I had my daughter, she was 10 lb 4oz and that finished mine off.  From then I suffered with awful left leg pain, it got so bad that when I lay down at night within minutes my leg had pins and needles, I couldn't feel it properly and then I would loose the feeling in my toes completely.  I just couldn't get comfy so my sleep was disturbed for a few years.  They offered me pain killers but as my daughter was a baby I refused them as I wanted to be 'with-it' for her.

      im a project manager so I spend 90% of my time sat down, that doesnt help.

      glad you find chatting is helping, I remember I was desperately trying to find someone to chat with before I decided on my op smile 

      debbie 

      x

    • emily58659
      emily58659 andrewclapp1

      Posted

      Wow 10.4! I thought my 9.3 son was big ouch! My second son was 8.5 and I think it was him that finished Me off, my back worsened when I was around 24 weeks pregnant with him and it's got worse ever since. Oh yep my sleep was dreadful it's improved a lot but at its worst its hurt to lift my pelvis up off the bed to simply turn to over I would get this dreadful pinch going down by bum to my thigh. My nerve pains got me so down I get a burning sensation behind both knees and in the arches of my feet ugh horrible pains. Thankfully my medicine helps block those pains out.

      Yes I am on Facebook are you?? Would be great to chat on there :-) my privacy settings are at the highest so I'm not searchable on there. How about you xx

  • andrewclapp1
    andrewclapp1 carla28825

    Posted

    Ha, it's such a tough time.  I drove my husband crackers talking about it too, mainly about whether to have the op or not.  Now I've had it done, I can see how much it was restricting me, I'm only 6 months in and be to be careful not  to lift heavy stuff and do anything strenuous but the results are great,  my husband is always saying I can't believe the progress you have made.  I was lucky and had full pay from work so for me the financial side was a concern as such.  Someone at work said to me 'if your children wanted to book a skiing holiday could you go?' .......... No I couldn't because of my back, then I started to think about all the other things I couldn't do with them because of my back.  That really gave me the push to sort it out.  I was terrified though, I did sneak some final au-reviour letters in my bag as I was so scared of something bad happening.  

    Its a massive milestone.

    i am in the UK yes, are you? I'm in Devon. 

    X

  • julie01285
    julie01285 carla28825

    Posted

    There is a good website for this in UK

    My problem was spinal spasms of spasicity & excrutiating pain where spina bifida occulta discovered .I too was worried at becoming wheelchair bound but did get relief from TENS machine, ultrasound & chiropracter finally injections for facet joints .Strangely what also relieved was uti medication .At the backs worst the pyuria count was 80 .This could cause sepsis  so ask for extended culturesof uti samples.

    My Niece has this which she controls with exercise .She has recently had a child .The RNOH in uk  has this on its criteria for investigation.

  • angie42070
    angie42070 carla28825

    Posted

    Hi Dawn, I have my fusion surgery in 2 weeks, I am having a two level fusion, with two discs removed and a cage put in. I was doing Pilates and yoga to help plus swimming. I also have spondylolisthesis grade 1 plus two disc bulges. Currently after 5 years of epidurals and exercises to build my core, I'm now at a point where I need crutches to walk and no social life. Fusion surgery for me is a life without crutches or a wheelchair, and a social life especially as I am single!  I went through two pregnancies with a thoracic fracture and needed to wear a belly brace to take the pressure off my back. I'm still working although restricted on what I can do at the moment but this is new, I was working as a nurse full time till 2 weeks ago. 

    I've had problems since I broke my back aged 11, I'm now 48 and experiencing exaggerated wear and tear in my lumbar back due to the fracture. 

    i can let you know in a couple of weeks how it is going. The statistics show 80% of people have a good result from fusion surgery and 60-70% for a two level fusion. 

    • angie42070
      angie42070

      Posted

      Oops meant Hi Dawn, sorry medication is making words a bit odd lol 
    • angie42070
      angie42070

      Posted

      Flipping heck Hi Carla!! Think I need to go get some sleep!!! 
  • Maley_Bear
    Maley_Bear carla28825

    Posted

    Hi Carla

    im a bit hesitant to answer the questions that you have asked because everything that you have said you don't want to happen has happened to me. Yoga and Pilates was a BIG no no for me as my spin was unstable, even after surgery I was advised not to do them. Pregnancy wasn't effected for me as I couldn't get pregnant because of another condition. But if I could of got pregnant my specialist said there was a lot they could do to support my back. 

    Please dont feel alone, 

    i know you posted this a long time ago but I really felt I had to reply to you, it just felt like I was reading something I wrote like you were me.

    no matter what it is you go through look for the light side of it. Im currently waiting for a second op possibly on my back because of spondy but you need to look for it. YOU ARE NOT ALONE. I'm also on the fibromyalgia site as well and all the people that answer my posts always make me feel better even if it's just knowing they are there.

    take care hope you are ok at moment x

    • carla28825
      carla28825 Maley_Bear

      Posted

      Hello,

      First of all, I would like to thank everyone for being so kind as to having replied to me. How are you all doing now? I know some have done fusion surgery, how do you feel now? Unfortunately, I had lost my password and email I registered on the site as, and it took me quite a while to figure out how to get to it again.

      Just an update really and a new question if I may. I don't think I would like fusion surgery, because it would immobilize the vertebrae completely, besides being only grade 1, I am sure no one would do a fusion on me. However, I came across another technique, bucks technique or bucks repair scot  modified technique. From what I could gather, a small thread is drilled through the vertebrae and if it is not completely broken, they try to repair it but  unlike fusion, you can still move and bend. I wonder if anyone has done this type of surgery and how are you now?

      I no longer have pain or spasms, however, if I walk for a long time, my back goes completely stiff and I have to sit down for a few minutes or stop walking completely. I know this sounds silly but because of this, my relationship is on the brink of ending, because my husband can't understand why I have to slow things down. My own mother tonts me for being so slow, despite me explaining to her that isthmic spondylolisthesis means the vertebrae  has broken and I have to slow things down. I don't think anyone can understand this until it happens to them. I am doing core strength exercise but the back stiffness is driving me crazy. I thank god from the bottom of my heart I no longer have pain or spasms but I wish I could do something to sort out the stiffness problem without surgery. However, sometimes I wonder if it would not be better to give in and do the surgery to try and have a normal life again.

      Keep positive everyone, soon we may have a solution for this problem, who knows, with stem cells.

       

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