spondylitic spondylolisthesis

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after suffering with my back for roughly 5 years . i virtually begged my doctor for an x tay . the findings were spondylitic spondylolisthesis . . the dramatic effect on my life and mobility is obvious , and i do not think that people realise this . from the moment i wake and stand upright , i experience intense stiffness aching , tingling and burning sensations from my lower back down into my legs . i can no longer stand for more than ten minutes ,before i completly seize up . i experience weakness and shaking of my legs . i think what is worse is that after all this time i was hoping that something could be done and that i could return back to my job as a florist . but with my job involving a lot of standing this is impossible . the only thing i have been offered is painkillers and a stronger anti inflamatory medication . the only thing that relives my back is bed rest , and if i were never to get out of bed again then i would be pain free . the quality of my life has been effected dramatically .

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  • Posted

    I don.t know what grade you have but I have a grade 3 and have have similar symptoms as you. My left leg is twitching about like a mad thing under my laptop!! I also have problems on right side but not so severe. When I first had back probs in Dec 11 I mistook it for cystitis as my bladder started being erratic at the same time but 2 tests came back clear. I had no choice but plough through the pain. I work in retail and was the busiest time of the year. My gp advised my I had a lower back problem but I dismissed it as I am not a backpain person. I have dealt with a few back pain sufferers at work!! Any way I had an mri and its over50%( how gross!!!), I find pain both real and radicular does have a tendency to get worse with activity but can also get worse if resting too much. I find that a gentle amount of smooth motion helps stop stiffness and regular exercise will help overall health. Core work excecise bike and resistance leg work are beneficial in maintaining strength in some muscles that may be weakened esp thigh. Though at times you have to push, make use of the painkillers, you get used to them. I work fulltime on feet all day no chairs! I have just finished a 6 day(approx65 hrs)week I have modified some of my tasks like avoiding overhead work ect. But I am still earning as I wait for pars block with a view to fusion. I also take a lot of meds to keep active tramadol 400 ml cocodamol daily 50, amyitriptilline at night and diclofenac which is better than naproxen this concoction does help but still get a lot of breakthrough pain. Check out your options and at least try to see a physio, perhaps you need to bug your gp for this, failing that another gp!!I guess as you have had this for such a long time its tempting to give up but please don,t. I know what you mean about rest and quality of life though!! My son just pointed out theme park discounts but I doubt will never be able to do extreme rides again and that saddens me more than not having a social life and shopping in the sales anymore but force myself to gym at least once a week .I also miss not kicking things when angry! I'm just looking forward to the fusion.

    I guess it is not that common and gps ect are used to more minor back complaints and do not appreciate the severe effects a spondy can have. You must not get fobbed off and you need to be persistent!(I was discharged from physio after 4 weeks for strengthening my left leg slightly and sent me back to gp! I was apparently fasttracked through msk for mri) I am finding getting treatment a battle and very slow.

    I am 46 and not ready for the scrapheap yet and I guess nor are you. Good luck and keep hassling for a referral.

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  • Posted

    I have grade 1 spondythesis and was diagnosed a year and a half ago after much pain and an MRI scan, since then I have stopped working due to the pain, I have had to surrender my driving licence to the dvla I didn't even know I had to but this condition is on their list, you HAVE to inform them if you have this and they WILL take your licence away from you !, if you don't inform them there are huge fines and other consequences. I have been through various pain killers etc, currently on 4000mg of co codamol per day, it doesn't completely take away the pain but helps, I too was offered the injections but after searching the net decided against it, I have the top back surgeon in Essex he talked about surgery & said he wouldn't suggest it until I was around 60 to 70 !, also I have again searched the net and seen so many bad reports after surgery I don't know if I would consider it. I am 52 years old this year and am now at home 24/7, am on disability for this, and cannot even drive anymore, I am in constant pain at varying levels but would rather be in pain but still able to walk than not at all, I feel sorry for anyone with spondythesis, if you are going the same route as me it took over a year and many medicals etc before my dla was sorted out so be prepared for the long haul. Even though I am disabled through this I am still required to work, I as anyone with this will know do not know how I am going to feel until the morning hence I work from home, I hope this is of interest to someone, my first posting so sorry for going on !
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  • Posted

    Can any body help i have problems for a good number of years with my back but in the last three years my neck and shoulders went into spasm, i suffered with pins and needles in both hands and had to ware support gauntlets for a year, then i had carpullel tunnell syndrome operations on both hands i was put on to disability for 18 months but was taken of because of the atois health examiners report, so i found myself a desk job and a little driving, but i still suffer with chronic neck and back pain. I lost my disability bagde and payment but in november last year 2013 i had a MRI Scan i have just got the results today. IT states that the patients magnetic resonance scan of the back showed spondylitic change and the patient has Chronic Pain which needs treatment. Can some one tell me please what does this mean, am i disabled and lets be truefull do i have disability claim, as before this his the first time i ever claimed and then got it took of me can anyone help please.
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  • Posted

    Hey you must ask for what you need through your gp. Ask for referrals generally through local physio service or a CAS appt. Try and see a neurologist if poss- I had no luck there. I eventually had my plif in aug last year.Even though no one told me some nasty symptoms return after 2-3 months after surgery. It is far preferable than the symptoms prior to surgery. By the time I had my op I had problems walking more than a few metres, even then I hobbled so badly, slowly and sideways- I was terrified crossing roads. I got to the stage when I did not care if I was run over. I unfortunately lost my job and have been advised not to return to work with any lifting or prolonged standing. So I am not working and I cannot cope financially, I also had to sell my house whilst off sick and moved to a nicer house which I own outright  in a cheaper area 73 miles away which I much prefer.

    Thry and be as active a possible, keeping leg and core strong as possible. You did not sy what grade of spondy you have. Grade 3 up are usually automatically dealt with surgically. This does not necessarily mean less drugs but the improvement is dramatic.Not enough info is available readily regarding spondy, Check it all out online- and good luck with getting a referral. It will not get better by itself, it can only get worse. This is why we pay national insurance- get some back- this is a serious condition-and needs a serious treatment. Please do not get fobbed off again...

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  • Posted

    Hi,

    I am wondering how you are now. Have you had a spinal fusion operation or are you still suffering. I have had Spondylothesis for 20 years and in the past few months I am much worse and suffer with weakness in my legs if I try to stand or walk for long. I do not know what to do. I have no quality of life and can't do anything but am too scared to go for the spinal fusion. I am 71 years of age. I would like to know how you are now.

     

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    • Posted

      No the specialist has told me not to for the operation as I'm too young !!!, makes a change !' I'm on Amitriptyline & painkillers which surprisingly do help, they don't take the pain away completely but make it much easier to cope with, feel free to call if you like I'm on 07969-809426. I am now registered disabled but still have to work so I've started working from home as really couldn't work anywhere as you will understand. Mark.
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  • Posted

    How are you. I know it is a year since you wrote on here but I suffer the same as you. The minute I get out of bed I am in pain. I suffer weakness and my legs won't hold me up and I have agonising pain in the backs of my legs and also my back. My life is a misery and I can see no future. I have been told to have a spinal fusion but I feel that is too risky and I could be worse.  Where are you at now.
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  • Posted

    HI,

    Sheila68761 thank you for your reply that is very nice of you, sorry to hear of you condition but do try to keep your chin up and think about the funniest things that you have done in your life before your condition came along just to take your mind of the pain and will it away if you can its not easy I know this, welcome to my world built with you in mind its a song that I often listen too and sing any thing to distract the pain, Listen to music and try to relax because thats all you can really do.I do struggle to get around my mobilty is greatly reduced becase of the pain, I have tried to go into town and i have found that other people walk quicker than i do, its like the Hare and the Tortise Iam the Tortiose. I find that I do need my car if i dare venture to go out like to the doctors and that i do need to park close by to the surgery as i have been issued with a walking stick by my Consultant through Physio although i do not have a blue Badge, thats another thing i have to check out, any anwsers on that one well all the best sheila got to go now please do keep in contact , do try to have a Merry Xmas & A Happy New Year, bye for now.

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  • Posted

    Thanks for replying to me. At this moment I could not be any more lower than I feel. I have friends coming to dinner tonight and I cannot stand at the cooker long enough to cook anything. My legs go weak, my backside goes icecold and my legs give way. I am now thinking about should I chance the spinal fusion operation as I have absolutelty no life and people just do not understand the situation and pain and weakness that I suffer. I am getting worse by the day.

    I try to look on the up side but I don't think there is one.

    Regards,

    Sheila

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  • Posted

    I have spondylolisthesis of L4,5 and S1. All is open according to MRI. my dr wanted to put me on a strong prescription for pain. I researched a lot and found a product called Terry Naturally Extra Strength Curamin from Amazon. I tried it. That was two years ago and still use it daily with zero pain now.

    I hope you are able to find pain relief whatever you choose.

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