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Thread: 2 1/2 months, unusual disease of sorts, 18 yo T5

  1. #1

    2 1/2 months, unusual disease of sorts, 18 yo T5

    Im 18 yo male, i had just recently got out of rehab, i had an unsusaly abnmormality called Cavernous Hemangioma, it was pretty much a cluster of bloodvessles and had tenticle like arms wraped around my spinal cord, ive had it for a few years but never gave me much problems and my nuerologist said it would be ok. one friday night i went to bed and woke up a saturday morning barely able to move my left leg and nothing else from T5 down, i went to the emergency room where my neurologist worked and they wanted to watch it and by the next day my had was curled into a fist and they were in a panic because it was about to paralyze my lungs, i went to emergency surgery and it was a 6 hour surgery to remove it. im now at home after 2 months of rehab, the doctors said they dont know if i can walk again, but theres no reason for me not to be able to. my hand is fully recovered and now just gettying back to life the best i can trying to figure out how to modify everything i want to still do, just to all that are out there with injuries as well its not all bad you can do anything you put your mind to, take it from me im actually getting a john deere tractor modified for me to use haha, i have my own land and cows i take care of with minimal help and own a small quail farm, so to all who think there is no hope for doing the things you love there really is, im always here for any help advice or support to any who need it. im always here for any you
    Last edited by oakleaf41; 09-28-2010 at 02:27 PM.

  2. #2
    Quote Originally Posted by oakleaf41 View Post
    Im 18 yo male, i had just recently got out of rehab, i had an unsusaly abnmormality called Cavernous Hemangioma, it was pretty much a cluster of bloodvessles and had tenticle like arms wraped around my spinal cord, ive had it for a few years but never gave me much problems and my nuerologist said it would be ok. one friday night i went to bed and woke up a saturday morning barely able to move my left leg and nothing else from T5 down, i went to the emergency room where my neurologist worked and they wanted to watch it and by the next day my had was curled into a fist and they were in a panic because it was about to paralyze my lungs, i went to emergency surgery and it was a 6 hour surgery to remove it. im now at home after 2 months of rehab, the doctors said they dont know if i can walk again, but theres no reason for me not to be able to. my hand is fully recovered and now just gettying back to life the best i can trying to figure out how to modify everything i want to still do, just to all that are out there with injuries as well its not all bad you can do anything you put your mind to, take it from me im actually getting a john deere tractor modified for me to use haha, i have my own land and cows i take care of with minimal help and own a small quail farm, so to all who think there is no hope for doing the things you love there really is, im always here for any help advice or support to any who need it. im always here for any you

    Why didn't your neurologist suggest having the hemangioma removed when it was first discovered? If the malformation penetrated the spinal cord, then observation is a reasonable option as surgery would have necessitated damaging the spinal cord to remove it. If, however, the malformation was completely outside of the spinal cord (that is, epidural) then I would think surgery should have been considered as an option.

  3. #3
    it was on the outside of the spinal cord, the reason it wasnt taken out befor is because i had no major problems none that even really phased me much the docors said they may cause more damage than it was doing to take it out at the time, and at the time is was dormant (about the size of the end of a sharpened pencile! lol) and literally over night it went from nothing to where i am now :/

  4. #4
    Quote Originally Posted by oakleaf41 View Post
    it was on the outside of the spinal cord, the reason it wasnt taken out befor is because i had no major problems none that even really phased me much the docors said they may cause more damage than it was doing to take it out at the time, and at the time is was dormant (about the size of the end of a sharpened pencile! lol) and literally over night it went from nothing to where i am now :/
    What were the symptoms that led you to seek evaluation? How frequently were you followed-up after the hemangioma was discovered? Did you have scheduled imaging studies to track its potential growth? (It's the very nature of these malformations that they start small and then, through some trophic mechanism, they grow.) It's painful to think that the result could have been prevented.

  5. #5
    for like a few years no one could even find out what it was, and when my doctor that i have now did he would have mri's done to see how it looked, he was waiting until it got a bit bigg so less damage could happen. but he wasnt expecting it to go from nothing to everything over night, the symptoms that first had me go check it out was i though i had a pinched nerve cause my leg was tingly, and the athletic doctor took an mri and saw something wasnt right in my spinal colum but was way over his head, he sent me to a neurologist and she had no idea, the went to my neurosergeon, and over that amount of time it had been almost a year and a half. thats what kills me everyday is it probably could have been prevented if it would have started a tad bigger so he would have just removed it

  6. #6
    and what actually caused all this was the hemangioma started bleeding on my spinal cord and the blood cause my spine to go into shock and swell to the poin nerve relays were cut off and put a lot of pressure at the meangioma site

  7. #7
    The question as far as prevention is concerned, is what was the real time span that you describe as "from nothing to everything over night"? That, surely, is an exaggeration. What were the immediate symptoms, and over how long a period of time (days?), that led up to your paralysis? Were you experiencing back pain? If yes, was it radiating to both sides of your body? Was there no window of opportunity to get to an ER beforehand?

    I don't mean to get you worked up. I'm projecting backwards based on my personal history. For me, I believe, there was a lost opportunity, and as I approach the 27th anniversary of my injury next month, I revisit the history and not without some emotion.

  8. #8
    no exaggeration. i was perfectly normal and fine no problems, nothing out of the normal, went to bed friday night and woke up this way the saturday morning. i woke up tried to roll out of bed and nothing moved with me, i called my dad and he called my neurosergeon and he told us to come to the Er and it goes from there

  9. #9
    i had a hemangiomma rupture at c3/c4...my right arm started burning and weak during work(noonish)..it was progressing...i called my md..they said to go to the er(4pm).....at that point my arm was ON FIRE!!....and i couldnt move it at all.....they took no scans/xrays etc..only took blood...said i had a pinched nerve, gave me cortison script and pain script..this was bout 6pm...went to bed bout 10pm....my 5 month old son woke up crying at 2 am for a bottle...i awoke to find my entire right side paralyzed!..shoulder/arm/hand/abs/hip/leg/feet...i was literally split in 2..called my brother to come get me to go back to the er..wife stayed home with my boys..5 months, 2 yrs at the time......
    .NOW they wanted to do xrays/mri/ etc...i dont remember anything from the er till about 2-3 days later....(i was told)they sent me up to the icu...my wife came in the morning to find me sitting in bed in icu talking with a nurse....within a short time i said "im having trouble breathing"...they had to intabate me...i now had a tube down my throat to breath for me......the scans showed a blurry area in my neck...they didnt know what it was...the next day, yea, THE NEXT DAY, i had surgery to see what it was..by this time i was FULLY paralyzed...neck down!....a hemangioma which i didnt know i had, ruptured, the extra fluid(blood) put pressure on my cord and was paralyzing me...
    for a couple of weeks all i could do was blink my eyes...my body was 100% shut down...couldnt move my head cause of the surgery, couldnt talk cause of the tubes down my throat, i was feed through a tube in my belly.......family would hold a letter chart and move their finger and i would blink to spell words to communicate...i was about as bad as it gets!!.. i was in icu for 6 weeks!...they ended up putting a trach in my throat to breath from the vent...now had no tubes in my mouth, but my vocal cords had froze..let alone u need breathe to speak..amazingly i was able to eat food and swallow with no prob(being fed of course)....some movement on my left side came back during my icu stint.....
    i was transfered to a heart/lung hospital unit in miami to get weened off the vent, they tryed in icu but couldnt....within 10 days i was off the vent and breathing on my own, i now had a very faint voice....then it was down the road to rehab at jackson (where the miami project to cure paralysis is) spent 2 months there....spent a toal of 4 months, 1 week in hospital....
    bout 6 yrs now...left arm totally norm, left leg 80%...right side bout 60%......i can stand with something to hold, can lock/release legs....good trunk/core....in chair,can bend ovr touch floor, sit back up, no prob......

  10. #10
    roc21 you gave me the biggest hope i could have ever asked for, i have so many questions for you

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