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vivavegasvvivavegas Posts: 185
edited 06/11/2012 - 7:23 AM in Matters of the Heart
Hi everyone.......I am at a loss, i saw a surgeon yesterday,a scoloisis surgeon.anyway for yous that dont know i was diagnosed at 16 as having a structural scoloisis by our local hospital and another surgeon at our local hospital who said not only have i 1 curve but i have 2]...........there was a mixup in this hospital that i was operated on anyway to cut a long story short i was fused from l4 to s1 with bmp no metalwork,and still have my discs left in.........anyway back to the story i saw the surgeon [who works at same hospital the other surgeon operated on me works infact i think my surgeon helps this guy out on occassions]...........anyway this is what he told me.........right head plum with hips and bottom,[now i have been told by physio that my pelvis is rotated and a chiropractor].he said u dont have scoloisis u have a kyphoisis..then he said u have 2 curves that balance out one another.when i told him about a local surgeon at our hospital who said that he thinks this bmp stuff has overgrown and effecting my spinal canal he said mr cooke hasnt opened ur canal up, i said well what about the stenoisis he said basically to sum it up that it would progress slowly and by that time i would be sixty, i said mr cooke didnt take out the discs he said no he didnt he didnt need to because he stopped movement.I proceeded to talk to him about when i was younger doing athletics at school that my legs would go under me but that i had just put it down to running at the time and that also when my mother had me at the doctors with her one day althought the appointment wasnt for me it was for my mum that the doctor had commented on why i was walking on my tiptoes.he said well i would think it was the running. The reason i am mentioning all these things to him is because i have been doing research into muscular dystrophy as scoloisis can be a secondary problem to muscular dystrophy..and breathlessness and weakness in upper and lower limbs it says that overall body weakness of the muscles and weakness of the diaphram.......i said to him that i was waiting to see a rheumatolagist and neurology about md he said no ur not that...HOW CAN HE TELL ME THAT WHEN HE DOSENT SPECALISE IN MD...I know that alot of people are in wheelchairs because of md but there are loads of muscles diseases, he said that he tells everyone about the risks of these surgeries and yes hes right with that,and he said mr cooke only gave u 50 50 that this operation would work he said personally i think they are crap operations and people only get help for 1 to 2 years.He said i think you should get on with what youve got.and i know thats right but how is someone suppossed to get on with legs going weak and numb,not being able sore and breathless on the ribcage, and maybe having some sort of muscle problem.deep down in my heart i know i have some sort of muscle problem and i think this surgery has made it worse i am loosing alot of muscle and if the nerves arent working right and anyway perhaphs i had md all along and just need it diagnosed. :''( :''( :''(


  • I don't know.

    If I were you I would get another opinion..get a new outlook on the situation,but in the meantime there is no need to worry about something before you know what to worry about.

    As MARK TWAIN once said~'I'm an old man and have known a great many troubles,but most of them never happened'

  • Thankyou Robin.its all one big mess and i dont know what to do i really dont, i forgot to mention in the post that i had contacted an independent surgeon at a german hospital and he gave me a written report which read.due to our advanced findings i recommend surgery at the earliest possible juncture to avoid further damage in the spinal cord area........he said to meduring a telephone call that he could remove the bmp that is was feasable but it would be 50 50 if i were to gain anything from it and the fee was 30,000 euros which was 21,000 english pounds my money which would have been i think 42 dollars in american money.i think[maths was never my best subject..........i think i am in a no wini situation but the way im going i feel like im heading for a wheelchair the weakness is that bad............the surgeon examinied my legs yesterday and said.they are ok but thats ok him just examining them for few minutes.its me who has to live with it, i dont know weather i should try and get the money together and try this surgeon in germany , i think with the hospital i got operated on, they know that it shouldnt have happend i would have been better not having anything done at all than this...........now they have stuck me in this position and caused pressure on the nerves.u think it could be possible that bmp has grown onto the nerves themslves...................aragggggghhhhh,NO WAY OUT]
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  • Well we really are a couple of grumblies aren`t we :< ,

    I have spoken to the Surgeons secretary at the hospital I am on the waiting list of today. I have gained as much knowledge as I would have if I asked my Saint Bernard, the receptionist was down right mean and as soon as she heard my accent , she shouted, ( maybe she believes people whose first language is not Danish understand better at higher decibals ?)
    She repeated several times that the 16 week waiting list was for ALL patients and that "her" surgeon had done loads of revision surgery before. She informed me that if her surgeon couldn`t do the surgery, then he would not have accepted the referal . However I am not convinced and have a feeling that when I get to the top of the waiting list they will suddenly realize that my op is not straight forward and will refer me elsewhere, where I shall again join the back of the queue . I have no idea how much or little strain I can put on my back whilst waiting the four months up to my appointment and was told to ask my surgeon at the appointment #o . I am bewildered and fed up and understand your frustrations so so well, and here we sitting about wasting our lives away waiting for surgeons to get our diagnoses straight :W
    It sucks , but my Dear Viva I think you need to take a few days to calm down, relax and don`t let yourself think of it. When you are ready, sit yourself down and make a battle plan. Prioritise what needs to be done in order of importance for you and get that part of the plan up and working first. Then start on point 2, of your plan . My first plan is getting my pain under control and I am giving myself 3 weeks to just concentrate on that and my pathetic poor appetite . When we are feeling like we do it doesn`t help at all to have so many things we can`t address going on and I believe the one problem at a time method is the only way to get any results. We will just end up sending ourselves crazy 8} .
    I hope you can find some help in this reply and that you can put the different problems in need to do order , and work through them methodically , I know it is difficult as they can intertwine a bit .
    I am thinking of you and you know I am here to listen to you on chat if you duck up in need of a rant !

    Love "V"
  • Firstly thanks for taking th time to post viking.......Im so glad that you are on the waiting list, you say that you think your operation is complicated viking.what do u mean?[im just curious as to what they have to do].......yeah it is horrible all this viking, the pain,weakness,fatigue,not to mention all the stress of it all and what that alone is doing to our bodies.Hopefully viking someone will be able to do your operation for you, just a thought the surgeon i sent my mri to in germany its free for the to give u an opinion all you have to do is send the films,actually i know 2 clinics...should do ive been talking to alot of surgeons.lol as u well know.......with me i wish it was a case of an operation would help but its not that simple......i have an old womans spine viking as that surgeon said the other day,u cant help your genes........even last night this breathing this and like its like deep down right into the muscles that i cant breathe, and its like all my muscles in my entire body feel the same way like i have no control over it, its a nightmare, i got a cancellation with a neurolagist and now instead of nov 6 its 4 october, so im really happy about that :* ....thats so :( isnt it.actually being happy about seeing a neurolagist......v the other thing i wanted to ask u is.right that surgeon that i saw the other day said that mr cooke didnt straighten me at botom by doing the fusion, but when i saw mr]my surgeon.he said i have straightened u....im mjust thinking if they have straightened 3 vertbre at the bottom then would that effect the muscles,u know what i mean.am i making sense...........like maybe thats what my surgeon means when he said he stretched a muscle.and if i had a muscle problem like then maybe him doing that would ahh .i dont know anymore viking.but do u get where im coming from...........i know that one of the surgeons said at our local hospital.i dont think u are getting the messages.....did he mean perhaphs because of the straightening too.its all i can guess

    With you viking i know u were really active and then all this happend you and you had to give up your work....im really sorry about that, and your probably wondering if you will ever be ok, we have to hope havent we v.cause if we just give up then we have nothing, with me i know i dont have much but like the surgeon said make the best of what youvw got, .i will still continue to ask for my miracle though.i read somewhere on one of ur posts u mentiones st jude[he is for hopeless cases isnt he viking.....well i shall pray to saint jude too!!!......and i`ll pray for you too viking.....again thank you very much for posting viking, and hopeing and praying that everything works out for us all. >:D< :> :) .after all that typing i need I) I)
  • I don't know,maybe I'm misunderstanding you.It sounds like the surgeon might have made a mistake?You say that you are worse off now than you were before.That's not good.You say there was a mix up @ the hospital.

    This just sounds odd to me,unless I'm not getting what you are trying to say.I hope that you feel better today. :)
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  • Yes Robin maybe i didnt explain myself properly u see i had been referred to the scoloisis surgeon anyway i ended up on this surgeons list, and i ended up being fused from l4 to s1 now the scoloisis surgeon who is a friend of his said i dont have scoloisis i have whats called a kyphoisis[what is that i should have asked him],yet he said i have 2 curves that nicely balance each other out..........he said that the other surgeon didnt straighten me at the bottom, yet the other surgeon said he did, im wondering right if my vertbre were straightened at the bottom if they had been previously curved.then by straightening them would that have stretched a muscle like on up and would that maybe effect the breathing more[the surgeon who operated on me did say that he stretched a muscle on me, but would it stay like that if was fused.u know what i mean like cause of him possibly straightening me then would it cause the muscle to stay stretched.yes thats it..........thats what i mean,now robin this surgeon tried to tell me that my pelvis is in the proper alignment and all yet 1 chiropractor and physio have both said my pelvis is rotated................its all a big big mess and i just have gotten the feeling, we have done what we have done.thats what he told me licve with it, make the best of what u have got, i have to agree with him there.im trying to make the best of what ive got, also i have been reading alot of stuff on that bmp stuff and causing breathing problems but im wondering would it cause breathing problems if used in the lumbar im just wondering maybe thats in the cervical.but i would like to know if anyone has had breathing problems with bmp used in lumbar...........thanks for replying to my post again robin.............i will give u permanent earache before im finished.lol and headache............lol :*
  • I think you should get all of your films.(X-Rays,MRI's etc.)

    The ones before the surgery
    The ones after the surgery..

    ..and any and all others.Take them to another(well respected Dr) and ask his opinion on the damages.

    Perhaps you should file a lawsuit.I'm not the suing type,but if I knew then what I know know,let's just say that I would'nt have any money problems today.. :)

    Take good care of yourself,because more than likely nobody else will be watching out for your best interests.It'll be ok ;)
  • :X :X :X :X.thanks Robin, ahh not i couldnt be bothered with filing a lawsuit, juat too much to deal with right now
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