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  • Cavernous Hemangioma of the Brain

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    Old 04-03-2008, 09:03 PM   #1
    scotty1701
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    Question Cavernous Hemangioma of the Brain

    My 17 yr old son was recently diagnosed with 4 Cavernous Hemangiomas in his brain. Left frontal lobe, left temporal lobe, right temporal lobe and one in his brainstem. The one in his brainstem is inopoperable. I am totally in the dark with this. I am aware that this is a rare thing for someone his age. I really need some help and or advice on this subject. Please if you have any relevant advice, please reply on this thread. Thank you.

     
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    Old 04-05-2008, 07:14 AM   #2
    feelbad
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    Re: Cavernous Hemangioma of the Brain

    sorry to hear that. having these in ones brain is,or can be a problem or not a problem,it all depends on location,size and if they are active "bleeders. i unfortunetly had one of these right inside of my spinal cord that kept bleeding off and on. i ended up needing to have it removed which caused alot of damage and disablities for me. but like i said, depending on if these are actually 'doing' anything at all or just simply sitting there,really would dictate whether they should actually have anything done with them or not.

    is he showing any actual neuro type symptoms? just what prompted his doc to actually give him the MRI or CT that discovered these? alot of what gets done or doesn't.like i said,all comes down to what the angiomas are doing or affecting. some,in alot of cases are best left alone,but if they are actively bleeding or affecting someone severely,then they would opt to have them or whatever one is causing the problems removed. its very highly dependant upon many different factors as to what would or wouldn;t be the best way to go with these. luckily,these are venous fed meaning they are a low pressure lesion and not high pressure like an AVM would be, that would be a totally different story.

    my very best advice to you would be to get him to any university type teaching hospital if at all possible. just becasue from what i found out with mine,and actually seeing three seperate neurosurgeons for consults on this glob in my cord,i was given very differing info on them til i got to the u of MN here in MN. this neurosurgeon was the head of neurosurgery there and had like over thirty years of experience and had removed and treated many cavernomas in peoples brains and spinal cords. it wasn't til i actually saw him that i understood what i was actually dealing with. not all neurosurgeons are as up on these as they should be,believe me. just finding a neurosurgeon who really understands what these are and also the overall characteristics of them is crucial in order to just be doing the right things. that really should be your main focus right now,knowledge and experience in your treating neurosurgeon.

    some neurosurgeons just have never actually even treated patients with these or really understand them. i was just shocked at the two ends of the spectrum types of evals i got from two supposedly very knowledgable experienced NSs. but neither one had had the overall level of experience that my third NS at the U actually had.

    just what have you actually been told so far about these in your son? there is a ton of info out there on the net that i started searching for once i found out purely by accident when i just had an MRI for a herniated disc in my c spine area done that i even had this sucker just a sittin inside my cord my whole life. there is one actual "good' thing about having these inside the brain Vs the spinal cord and thats the brain has 'give' to accomodate a possible bleed if it should occur but the cord does not. i would have become paralyzed if mine had bled just even one more time since i was running out of cordspace from previous bleeds and the size of just the cavernoma itself.

    because of the way these things are and the simple fact that they are venous fed,even being in the brain,the bleeds are minimal when they occur. just oozes vs what an actual arterial brain bleed would be,you know what i mean? believe it or not,cavernous hemangiomas are pretty common and many many people actually have these somewhere inside their bodies and they never pose a problem. most are found incidently upon having some type of scan.

    if you could please give me a bit more info on your sons situation i will try and help as much as i can. but try and locate that neurosurgeon who actually has the most experience and true knowledge in your area. and like i said,if you happen to live near,even within a few hours of any university type teaching hosp,this is where i would head to. they just see alot of more of these types of lesions there than most other neurosurgeons do. i do wish you luck. please let me know howthings are.marcia
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    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 05-20-2008, 07:24 PM   #3
    neens7982
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    Re: Cavernous Hemangioma of the Brain

    I have several on my liver and just had 1/2 of my liver removed.

    When you have a chance, look up HHT in google. Some people have a genetic disorder that leads to arterial venous malformations that can manifest in the brain, the liver, the nose, the spinal cord, etc.

    Good luck to you

     
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