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has anyone heard of this?

lollycbllollycb Posts: 8
hi,this is the first forum i have ever written on..i am 31yrs old,i grew up doing gymnastics and went on to play football as a teenager.since the age of abot 15,when i moved suddenly,quickly,awquardly etc my leg would just give way and start shaking like some sort of fit.i would have no control over it and could not bare any weight whilst this was happening and just had to wait for it to stop.this ended my passion for playing football.i spent a few yrs weight training and powerlifting.i've had 4 children (all ceseareans,with the most intense lower back pain ever imaginable during labour!).the giving way and fitting carried on quite frequently most of my life.i saw various specialists thinking it was my knee and got told many things over the yrs.but things changed!one day about 8yrs ago i was at the checkout in sainsburys when i had forgotton something,so i gently jogged off to get what i forgot,when suddenly,not only did my leg give way and have a fit but my arm aswell!so the entire left hand side of my body was having this wierd fit,that i had no control this time i was suffering chronic pain throughout my back,pelvis,hip,thigh,leg and even my foot,with now a very painfull callus sitting on a nerve under the ball of my foot which i've had for 5 or 6 yrs now despite an operation to remove it.finally i got the docter to refer me to a spinal surgeon who descovered that i have an extra bone,that looks quite big which decends downwards from the left hand side of my pelvis which aparently i would have been born with they said and they said it is quite common,yet i have searched the internet and cannot find anything similer to it.i am now 31,i cannot stand or walk much without struggling,in pain everyday,the left side of my body still has a fit and gives way EVEN when i'm swimming and also i've noticed when i'm lying in bed a strange sensation throgh my left arm with almost a numbe like feeling in my 2 smallest fingers which every so often start twitching of their own accord!.i am really confused as to what is going on,what can be done and what its actually called!.i have now moved house and need to find a new specialist.any ideas anyone?


  • Have you had your spine x-rayed and also a full spine, or at least a lumbar and cervical MRI scan to see if there is any compression on any nerves?

    I also get numbness and tingling and pins and needles in the ring and little finger on my left hand and the thumb and first finger on my right hand. I have been told it is due to compression of nerves in my neck.

    What has the spinal surgeon that you saw suggested to treat your symptoms? Can this extra bone be removed, and would that deal with your pain and other problems?

    Hopefully others will be along soon to also give you their advice. I haven't ever hear of extra bone in the area you describe and will be interested to hear how they will treat you.

    Meanwhile, you have found a great place for support and there is a wealth of information here too.

  • lollycbllollycb Posts: 8
    edited 08/13/2018 - 8:57 AM
    i dont know where i find my docters but for 10yrs they looked at my knee with no luck,then they did body scans,bone scans,radio isotope stuff only to tell me i must be majorly depressed and its all in my head!..then as a last port of call the docter sent me to [edit] stanmore when i insisted someone look at my back.after a year before actually gettinganywhere they lost me in there system and so i had to get re referred,it then took them about a year to get through just 2 appointments for xrays and mri scans.i was then presented with this picture showing me my extra bone and where it was,but didnt see the surgeon just 'one of his team',he didnt mention the name of it,didnt mention nerves,depression..come to think,he didnt really say much at all except he was going to make an appointment to try a facet joint injection to see if it helped.once i had the injection last year,subsequent appoinments kept being rearranged again and again but then when i was finally due to be seen 3 months ago i then had to move house so never got seen..what ammuses me is when i asked if i was born with this and i've had so many body/bone scans etc,how comes no one has found it until now and simply got told well if there not looking for it there not going to necisserily notice!.
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  • I see you are in the UK :H Me too!

    I wonder if your GP can tell you exactly what your diagnosis is and what it is called. The specialist must have sent a letter to the GP giving that information.

    If you could find out what it is called, then you would be in a position to try to learn more about it, and what the chances of getting rid of, or at least treating it, are.

    You are young and have an awful lot of active life ahead of you. If there is compression on your nerves, it may be a good idea to try to release it to avoid ending up with permanent nerve damage.

    Did you find that the injections that you had helped?

    Do hang around here and ask any other questions that you may have. Let us know how you get on too. Hearing of others experiences is often helpful in a condition that we are dealing with.

    Please note that none of us are doctors, just fellow spinal patients with our own experiences to share. :-)

  • i dont know what kind of docters i must see,as they havent sent anykind of letter to my gp,as when i saw my gp with regards somekind of aid to help with walking,he looked at me like i was aking it up and the referall to the physio to get measured for crutches simply said lower back pain or something like when the physio asked and i told him,he was like,you cant have,are you sure,if you did your gp would have put it on the referal..but yes,its there,in black and white, i saw it and you coulnt miss it and i'm prttey sure the specialist knows what bones the skeletal structure consists and what should not be there!..from reading its seems the right term may be anomaly or abnormality/deformaty,which as a general term could describe a wide range of different/unusual bone growth may be that it is common in the way of someone having an extra bone and just not have a name as such for its specific position or something..
    one thing i will do now i have just moved and got a new gp is arrange to see several different surgeons for a consultation and then go with the one i feel most comfortable just means starting all over again.
    i will deffinatly post back withany updates or new info...oh and yes the injection did help with most of the pain,but didnt last long and didnt stop the giving way/fitting..infact i was actually quite concerned that if while my body is screaming out in pain,telling me somethings wrong,dont bend like that or sit down/stand etc i am not able to recieve those warning signals so in turn without the pain to stop you and warn you,you could end up causing more problems and more damage! is that a good thing?..i'm not sure,mabe i'm wrong,it as just a thought. :)
  • i willdo some research on the condition you have listed,i do not recall having looked at anything with this name yet and intrigued to see what it says..i now it could be nothing but it brings a glimmer,u know...
    yes,what i said about my upper extremity doing it eaight years ago,if i can just clarify,fro that day when it happened the first time,it has then happened every single time since..what worried me is that one time which was particularly severe,friends had to grab hold of my to stop me falling and as they spoke,i could hear then buti dont know why,but it was like i just couldnt speak...
    no one has ever mentioned ms,though i dont feel anyone has fully properly listened or believed what i'm going through,or they dont make the connections/filters of symtoms...i will have a read up on that also as i've heard of it but unsure of whats what...
    you get used to puting on brave face and living with the usual chronic pains and discomfort.its when i get other pains/new pains it bothers me the other night i was suffering siatica,but in the right hand side instead of the left..n whats up with pains u recognize but only occures say every cple of weeks or month,like every so often i will get the sharpest pain in my chest wich willcome and go for about a day then stop and another is really sharp pains in my head again will come and go a few times through a day,but only every so often..n i think almost every joint everywhere clicks n cracks all over the place constantly..
    another thing not back related (i dont think) is no matter how much,sleep or rest i have i can only ever get halfway through each day before i'm done,good for nothing n all i want to do is get to bed time but have to struggle on to do dinner,pack lunch's,bed times n all the chaos that 4 young boys bring along with it...
    i'd best go if i'm to get enough sleep to function.
    thankyou so much for your input. all and any advise/ideas welcome.
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