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Spondylolisthesis

Posted , 21 users are following.

zebbiedog
zebbiedog

Hi there, new to this forum, looking for other people's experiences.

My 12 year old daughter has just been diagnosed with grade 2-3 congenital spondylolisthesistween between L5 & S1. Quite sad really as this is her second birth defect (the first was detected at birth, a massive pelvic tumour growing from her coccyx which was removed at 11 days old).

Anyway, long story short, the spinal surgeon feels the slippage could well progress with her being a girl, being young and her S1 being curved on top rather than flat.......but who knows?

Nerves are being compressed to her bladder & bowel. Medical emergency? usually but my daughter is not presenting any new symptoms on incontinence (she has been left incontinent due to her pelvic tumour and has since had bladder & bowel reconstructed to provide continence - but not in the 'normal' way).

So where do we go from here?

I was wondering if others had experience of physio. What is the aim of physio - to pull the spine back into line or just to maintain stability & mobility? Does it relieve pain as she has a lot of that in the back and hamstrings.

I have read in grades 1-2 non-surgical treatments can really help to avoid surgery. My daughter is almost on the grade 3 line and is potentially presenting with neurological symptoms (although this is being masked with her long standing bladder & bowel problems) but in the last couple of weeks she is now unable to lift the toes on her left foot and has a numb patch on her left calf.

Anyone dealt with anything similar? Feeling very alone with all of this so would love to hear from people in a similar situation.

Thanks

1 like, 29 replies

29 Replies

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  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Hello zebbiedog

    I'm so sorry to hear all that your daughter has been going through and at such a young age.

    I was diagnosed with spondylolisthesis some 20 years ago, also at L5/S1. Symptoms first appeared about 3 months after a fall from a train in the dark down on to a very steep platform (now rectified!). One consultant said it appeared on X-ray similar to injuries he had seen from falling from a horse!

    When diagnosed, spinal fusion/disc removal was the recommended surgical procedure by one consultant but when seeking a second opinion I was advised to get in the water and swim but only on my back - not an option for me as I'm a non-swimmer. Some time later I was fitted with a made-to-measure surgical corset to wear on those occasions when my back let me down. At such times I had great difficulty sitting. I also had simple stomach and muscle strengthening exercise advice from an osteopath which I found helpful.

    I did have a long-term condition in recent years which at first was considered to be due to my spondylolisthesis. However an orthopaedic surgeon ruled out his initial suggestion of spinal fusion following the results of an MRI. He considered that the grading of my spondylolisthesis was not severe enough to be causing the severity of my then illness. So it would seem that after all these years my spinal problem has remained stable and in fact much improved obviously down to just being careful. I am very careful not to stumble or in particular not go over on an ankle as this never fails to cause a severe bout of sciatica. I also have numb toes.

    Now as a senior citizen I am finding my back problem well controlled simply by choosing the right bed, the right chair and not lifting heavy weights or using the vacuum. I also walk daily. On the rare occasion that it lets me down I swear by a simple support girdle (the original surgical corset no longer fits and the replacement supplied by the NHS now is nowhere near as good). I usually have relief after just a couple of days wearing it and I'm wondering if a panti girdle would help your daughter?

    I hope someone comes along with more experience of a younger person with this condition to help you. Good luck to you and your daughter.

    • Lulu1010
      Lulu1010 MrsO-UK_Surrey

      Posted

      I'm also a senior and was born with spondyllolisthesis. I now have severe arthritis of the spine. As I aged the pain increases. You mentioned the right bed and right chair. May. I Ask what is the right bed and chair? Also, you mentioned a support girdle. What type do you wear? There are so many on the  market. How often do you wear it? I truly appreciate all your help!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey Lulu1010

      Posted

      Lulu, basically any chair or bed that is supportive, ie not ones with floppy cushions or backs, and not necessarly anything advertised as orthopaedic as they can prove far too firm.  I have found mattresses by Dunlopillo to be excellent as they can have a firm layer with a thinner softer layer on the top.  The original fitted corset made for my spine ceased to fit me years ago and the replacement on the NHS was uncomfortable.  I now find that a simple panti-girdle worn for a few days during an episode with my spine eases the pain - Playtex do a good range.  It depends what feels right for you and your shape. 
    • isaac37563
      isaac37563 MrsO-UK_Surrey

      Posted

      Hi,

      i am 32 years old now, and i have had Spondylolisthesis for about 10 years, I'd say around grade 2 (50% or less). it has always been quite symptom-less, so occational lowerback pain when i stand for too long, or exercise excessively, which could be mitigated through sitting or laying down.

      in the past month, the lowerback pain started existing no matter what i do, and i can "feel" my spine when im laying down. I'm thinking whether or not i should undergo spinal fusion surgery, as the suggestions from doctors are quite different. some say that i should do it while im still young, some say to drag it out until it gets too severe to ignore.

      i'm not sure what is the best option right now, so i would like to seek your advice on this matter.

      also as a bit of background, I have been very active in weightlifting and boxing etc. for at least the past 5 years, doesnt seem to be affecting the spine.

      thanks so much

  • zebbiedog
    zebbiedog

    Posted

    Thanks ever so much for the response.

    Yeah I did wonder about some sort of brace.

    Her posture is terrible. This was what first alerted us to her back problem. She looks twisted and she can't

    straighten her right led or put that heel flat on the floor. So we really want to find something that will improve

    that as she can't continue as she is.

    With all the pain and suffering she has had with numerous operations her pain threshold is pretty high but we really need to find some pain management as she is having pain ever day and although it's not excruciating it is pretty constant. She just suffers it and I feel she is a little young to be popping pain killers every day.

    Again any help is really appreciated. I'm on a steep learning curve here!

  • maggi7
    maggi7

    Posted

    I didn't know that spondylolisthesis could be genetic. I'm 57 and the condition is limiting my mobility fast.

    All I've been offered is very risky surgery - which I refused - and pointless physiotherapy - which would make my condition worse. I love on painkillers; Co-codamol and Gabapentin. They don't actually touch the pain.

    But I'm dependant on them.

    Spondylolisthesis, in MY experience is a misery of pain that we have to endure -and there is NO treatment.

  • zebbiedog
    zebbiedog

    Posted

    Not really what I wanted to hear as she's only 12 and has endured so much pain already (non spine related). Onwards and upwards to find some relief for her.
  • zebbiedog
    zebbiedog

    Posted

    I'm not aware it is genetic. It is congenital. She was born with an abnormal spine that has progressed to a slip now she has hit puberty. I do feel as though I failed her as I was the one who carried her through a perfectly healthy pregnancy. I have often asked 'what did I do wrong?' Even more so recently with the diagnosis of a second birth defect but I reassure myself I didn't pass this on to her. Though I am the one who should be suffering as I was a gymnastic so didn't look after my spine at all as a kid!
  • MrsO-UK_Surrey
    MrsO-UK_Surrey

    Posted

    Zebbiedog

    No, I don't believe it is genetic - it is usually either caused through injury or through general degeneration as we age. In your daughter's case has no-one suggested it might have been injury caused during the surgery to remove the tumour perhaps?

  • zebbiedog
    zebbiedog

    Posted

    No sign of injury and the tumour she had was attached to the coccyx so much lower down. It is hard to believe it is not connected and I am still to be convinced but scans are showing that it was how her spine / vertebra formed when she was born.
  • maggi7
    maggi7

    Posted

    When my spondylolisthesis was first diagnosed, I was told that there is no particular cause. Not genetic, notrelated to lifestyle, not necessarily caused by an injury.......I'd believed that my pain was dierectly related to the fall I'd had from top-to-bottom of the stairs - as the result of which I'd suffered a broken rib & a fractured coccyx.

    Why does this site chop words up? Every sentence is ruined by words being choped-off! Doesn't aid flow of any thought.....!

  • maggi7
    maggi7

    Posted

    I truly wish your daughter well.

    I wish I could offer some words of comfort. Alas! My spondy is caused by something very different - and I'm

    so much older than your daughter.

    My thoughts will be with her.

  • cerotto
    cerotto

    Posted

    dear zebbiedog,

    I do not know if my experience has any general value (and I think that every case is somehow different). I have a spondylolisthesis of extreme proportions (L5/S1; L5 has completely slipped from S1). However I have no pain (fortunately) and I can do every sport/movement I want. Apparently I inherited this condition, it developed or appeared when I was 14 or 15. I did not go to see any doctors at that point because I felt that this was my business and I think in general that surgeons/orthopaedists know very little about the movement of the human body . What I noticed at that point was that my spine was deforming a bit and I had pain in my legs and in my back while standing (not while walking). I continued to do sports (biking; climbing; skiing; walking a lot etc.) to build up strength in my back and abdomen - and this somehow worked out for me. When I was 17 or so I had no significant pain anymore; I got a very good feeling for my body and its capacities to move; and with time I also got confident enough not to worry anymore about the visible deformation of my back. Of course this whole development was scary; but so is growing up anyway. I am now over 30 and luckily still fine and an active climber. My advice would be: encourage your daughter to move, to play with movement in every possible way. The pain or weird feeling of her legs etc. might be a critical phase, but eventually this will get better. Instead of seeing surgeons I would rather see an osteopath (or someone who has a dynamic notion of the human body; not a static one like ortopaedists/surgeons who look at images and then try to rectify). Even if a surgery is necessary, never stop moving - the body is capable of adapting a lot. (doctors who have seen x-rays of my spondylolisthesis would not believe that I am fine and can move the way I can). best, xxx

  • mmegon
    mmegon zebbiedog

    Posted

    I have had 2 reconstructive surgeries for spondylolisthesis and would be happy to answer any questions you may have.

    Physical therapy is a MUST for me to prevent a third surgery, if that is even possible.  The surgeon said I will need another in abt 10 yrs.

    I found pain relief after both surgeries.  However, many pple do not.  

    I pray and do what I can to be healthy.  

    I am sorry your daughter is going through this.  It sounds like her nerve damage is worsening.  Surgery will be required at some point.

    Regards, mmegon

    • susan39600
      susan39600 mmegon

      Posted

      Hi there

      I have only just discovered this site and thread. I am diagnosed with Spondylolisthesis L4/5, L1.

      I am interested to hear more about the surgery you have undergone. I was told by a surgeon at the time  of diagnosis that surgery was not an option at that point, as it is very risky, so I would have to be much worse before it was carried out.

      Best wishes

      Susan

    • UK-Ven-medicate
      UK-Ven-medicate susan39600

      Posted

      Susan I was told that last week by my spinal surgeon too. He did thou explain the operation too me in full anteriorly and posterially. What risk were given to you ?

      I have been told I have abnormal blood vessels and also nerve damage which may be obstructing the area he need to bolt up

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