Lumbar scoliosis??

I was wondering if anyone suffers from lumbar scoliosis who could share some symptoms etc .

I wrote a post about my summer flare as this is my worst time of yr for pain unlike the usual summer relief some people get my body seems to like being different lol .

So for me I've a 20 yr history . Back pain started after having my first child but always manageable with rest and pills . I've had multiple visits over the yrs to the doctors and specialist and never really told anything worthy of noting , as in no official diagnosis. I had an xray in 1995 and I was told by my physio I had a curved spine but didn't take it as Gospel or as a diagnosis just something she happened to say . In more recent yrs I was told I had very mobile hips but it took another few yrs and for thing to be so painful i could barely walk due to back and hip pain to be diagnosed with hip dysplasia but I've not had any real diagnosis for my debilitating back pain for the past 2 yrs which is the same pains and problems I've had for over 20 yrs .

So I do see a clinical psychologist for pain management and we was going through her review letter and she read out that I explained I've had 20 yrs of niggling pain which went bad in 2015 and with your scoliosis .... I was like,,, what scoliosis???

She checked her notes and sure enough in one of my many doctors visits a doctor noted I had scoliosis this was 2010 when I was suffering pins and needles constantly in my legs and butt (one thing I'm currently suffering from badly) I was not aware of this I may of forgotten but I would of thought I'd would remember something like that .

So I have had a good old Google and as I had kinda related my pain to that of osteoarthritis and how they can be similar was the first thing I noted about scoliosis, along with a gap between back and floor when laying flat but it seems that all the sites are saying symptoms as the same as for back pain... that does help narrow it down .

I have multiple symptoms that vary and change right now in summer flare I feel like someone has ripped my back open and hit my lower spine with a baseball bat . my pain tablets don't touch it and neither does a bath which would normally help . And I also can't have anything touching my skin clothes even irritates me due to the soreness .

My psychologist actually suffers scoliosis herself and she can relate to what I've spoken about but I didn't want to bombard her with questions about the scoliosis as I'm there to learn how I can manage mine so if anyone does have it or knows of anything it may just help with knowing why I am in so much agony 24-7.

Thanks

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  • hi vondahue, its really sad to hear that you 've been suffering from that pain for a long enough. i've been diagnosed to have a scoliosis and spondylolisthesis. i have a little curve in my lumbar spine and thoracic spine. so i've been suffering from back pain about 3 yrs ago. but the case doesn't get to serious, for my spondylolisthesis, i've been reach in stage 1 same with my scoliosis, thanks god the curve only a little so its not a big problem.

    i start my physiotherapy 1 yrs ago. but the doc at that time doesn't know my actual prob so it doesn't work for me and i start went for another hospital early in this year. that's the time i know my real prob. i only follow my physiotherapy every months and and i start taking supplements like calcium,magnesium and glucosamine and of course i need to drink a lot of milk. after 3 months its really help me a lot to reduce my back pain.

    before, i really have a hard time cause of the pain. its really hard for me for even to sleep at night and my activity have been reduced. for now, i only take pain killer when its time i had a period pain. and i can feel a huge different of the pain. it does not affect me like before.

    sorry for a long story, regarding the symptoms of course i had a severe back pain, it's really worse and sometimes i had to laying down for a long time because of the pain. and the worst time for me is when i had a period pain. i also struggle to sleep at night. and it cause me to had insomnia for about months.

    i start figuring this things out when i noticed that i had 'c' curve shaped when i sit or stand, and uneven shoulder and legs and also back pain that become worse from time to time . you can check at the google the symptom of scoliosis or how to detect scoliosis. or you can go to my old post. but for your symptom of needling pain sometime its happen because of the nerve but im afraid if it was a slip disc. maybe you can confirm this with your doctors. i'm not pretty sure about this because i didn't have this symptoms, but better you check before its getting worse.

    im afraid i cannot help you with your problem, i only share my story and i learn to accept the pain start to change my life style. so far my condition are getting better and i hope for you so. ive been facing worse pain and worries for my life so i understand how that feeling. i hope that you can get better.

  • Hi.

    thank you for replying.

    Alot of what you said I can relate to from the lack of due to pain waking me or that if I roll onto my back is have full on pins and needles in my arms and legs which takes what seems like an age to stop . The inability to sit lay or stand for any length of time I generally sit on my sides which irritates my hip dysplasia and pain it's a no win situation that only a bath cos sometimes give me a little time to breath.

    The non diagnosis despite 20 yrs of pain the disinterest via medical professionals who prefer to say oh u have pain go get on with it. And the uncertainty of the future.

    I have things I have in place to manage my life and daily things I'm home with 2 home schooled children one with aspergers so this means I have to do the usual daily things no matter what I have to drive there fore have to cope with pain and sometimes not being able to rest when it is really needed.

    I do feel slightly better with knowing it is most likely scoliosis but I do need to change my doctors due to a move of house so I will once again try to push for xray or mri to hopefully be able to finally understand why I am in so much pain and then I can make plans for the future months.

    I think that you saying you take supplements is definitely something I should be doing so thank you for that little pointer

    I hope that the physio helps you and that you are some how able to manage things the best you can

  • I suffered widespread scoliosis beginning at age 13, and by 15 my spine was severely curved. The angles, as I remember, were 43, 45, 57, and this required surgery to fix.

    They fused my vertebrae and inserted two metal rods, held by 14 steel screws, to support the spine while it healed (and forever after). This fused 12 of my vertebrae, severely limited my mobility, and seemed to improve the painful symtpoms I had pre-op (like you, but had pain, numbness, tingling in my legs, and notable back pain at all levels). At 21, I was working at a hospital (of all places) and both the hardware and fusion broke at 2 levels (T10, L4), and this left me pretty well screwed. It was two years before anyone cared enough to check my X-rays for the cause of pain, despite five trips to the ER. I finally got the fusion revised and the hardware replaced; by then I'd lost 80% of my ability to work and function, and I'm plagued by severe back and leg pain to this day. On bad days, my legs go out and I'm unable to walk or drive, as I can't feel myself pressing on the pedals.

    I do strongly recommend looking into surgical options. HOWEVER, I also STRONGLY recommend limiting yourself afterwards... using extra care while lifting heavier items, refraining from lifting huge loads, no extreme sports, skiing, etc., and maybe even modifying your home and lifestyle to help (I'm often unable to tie my shoes, for example, as my spine doesn't bend).

    I'm not a doctor, so I can't tell you what's right for you. But I can tell you the pinched nerves (numbness, tingling, shooting pains), can be alleviated by spinal fusion in many cases.

  • Wow that's alot to of gone through and from a young age too.

    I have had a look on good old Google and seen how bad some curves can actually be.

    I know i have a leg length difference of over a cm due to one of the orthopaedic appointments I had 2 yrs ago and after me asking lots of questions and getting a thorough exam she saw my hips weren't level but at the end of this appointment I was sent home with a bit of paper with her scribbles on stating lower back exercise... Google it .

    And get a butt massage... and bye go get on with it .

    In 2015 when severe pain started I literally picked the hoover up and my back just went . A bit like slipped disc kind I've had a few times I put my back out and it got better after a few wks but this time it never did. So with all the piecing together and reading up I have done in past few wks since scoliosis came to light I hope the doctors will see a good enough reason to finally do imagining.

    When I was diagnosed with hip dysplasia I was simply told over the phone I had shallow hips and left to it good old Google and not knowing how severe it was I thought over surgery options then in case it was needed at some point and knew it wasn't even an option due to my life . I have 2 kids both home schooled both 24 7 me and no one to help us at all. So back surgery would not be something I consider until it's last resort. Plus the fear of it not being a success etc is concerning .

    I recently moved house to enable me to if needed later on to do any adaptions which was impossible where I was before . I now have to consider driving options as this is a massive issue as where I live is a village with not even a local shop nearest is a 10 min drive which right now leaves me in searing pain which to drive like that isn't good.

    Are there other things you have tried or put into place with in your daily life to help at all. I generally try getting through by trying to stay positive laughs and jokes and things I can sort of manage that I enjoy.

    How are your days now ? Mobility wise getting out or just out of bed lol I know sometimes I've literally had to throw myself to get out of bed as I couldn't move to get out like I normally would of. Which is always a fun way to start the day lol .

  • Hi There, I have scoliosis...was diagnosed at 17 with 45 and 65 degree angles. At 19 I had the surgery where they fused above and below, and inserted rods with screws and wires the entire length of my spine (literally looks like a ladder in there!). I am now 55 and have led a very active life. Honestly the only think I can't do is a back bend (I was a gymnast when I was young). I play golf, ski, did kickboxing for 15 years, had three children with no pregnancy problems at all. It was a very successful surgery for me. Now...because of my very active life... and I tell you that because the scoliosis surgery did not restrict me at all...I started having some problems below my rods at L4, L5, S1. I think all the impact of my sports activities landed on these discs, so a few years ago I had a double fusion, which was equally as successful. So I am now loaded up with hardware, but honestly, once again it does not inhibit me in any way. I don't know if I just heal well, or if I got lucky but I have no pain and I really do as I want. I'm back at the gym and very active. I wish you all the best.

  • That's great and an eye opener . There are always risks with everything and the uncertainty but to get through 2 lots of surgery and be active is great.

    I am not a good healer .. bruise easily and my c section took me a lot longer to recover from than most as does a simple cut. I am also underweight and general health has suffered over these past yrs however your message will stick with me should I ever get to ever needing to consider surgery so thank you for that

  • Don't give up and start telling yourself that you are, in fact a good healer! As hard as it may seem try to get positive and tell your body what's what. It can respond. I've also gone to the "alternative" side of medicine...reiki, craniosacral therapy, and acupuncture. All were helpful. I also had three c-sections, with no problems, and this was with the rods and such from my first back surgery. Really try to talk to your body...don't be angry with it...as crazy as it sounds, thank it for all the "lessons" it has provided and let it know that you now are ready to heal and to feel better...Best of luck.

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