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    Old 01-25-2012, 01:20 PM   #1
    lilysmom1021
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    Question Anyone with any experience with this?

    Hey all, im hoping to understand maybe what is going and and get some insight into what i should do next..I had a cervical mri with and without contrast where they found a "1 cm heterongeneously enhancing lesion that may represent an atypical hemangioma, an osteoid osteoma, or an osteoblastoma.A malignant bony lesion is considred less likely"
    I had an additional mri 6 months later and got the same report back...i dont consider the "less likely" comment to be reassuring that it is a definte no and the doc seems to think that i have nothing to worry about and is not following up with it anymore. Does anyone have any experience with any of these things? Or know anything about them from experience? Thanks in advance

     
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    Old 01-25-2012, 05:27 PM   #2
    jennybyc
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    Re: Anyone with any experience with this?

    We've had several people here with hemangiomas of the vertebral bone. The docs don't remove them as it does more harm than good. But if the lesion didn't grow over the past 6 months, then it couldn't be malignant...they grow and grow and grow. I've had osteosarcoma in my family.....it is an aggressive cancer of the bone that doesn't not grow slowly. Let's just say, if it was osteosarcoma, you'd be dead in 6 months.

    All of us are "born" with strange things going on but most we never know about until it is "discovered" with a test for something else. My thoracic MRI found an aneurysm in the splenic artery that is almost 2cm in size. I freaked out! I wanted that thing out of me. My doc kind of laughed at me and told me that it's probably been there my entire life and just now found by accident. And since taking out that aneurysm means removing my entire spleen, I would be doing more harm than good to myself. It hasn't gown a single millimeter since so I have learned to ignore it and leave it alone. I like my spleen right where it is. But I do get CT of the area every 2-3 years just to check on the size. It starts to grow again and they may take it out.

    I bet you've had this abnormality in the bone since birth and it just sits there. So watch it for signs of growth and otherwise, if it ain't broke, don't fix it. Removing it might make you a lot worse and leave you in pain for the rest of your life.

    Just my take from my own experience.

    Jenny(fused C3 to t1)

     
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    lilysmom1021 (01-26-2012)
    Old 01-26-2012, 09:10 AM   #3
    feelbad
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    Re: Anyone with any experience with this?

    i agree with jen here that this is something you were more than likely just 'born with'. i was born with a hemangioma right smack IN my spinal cord. but where your 'lesion' appears to be sitting is IN the actual "boney' part or within a vertebrae?

    honestly, while this may or may not ever really be a significant 'thing' for you, i KNOW without a doubt you want and deserve 'appropriate' answers here. and i don't blame you as i went thru the very same thing with three spearate but very different opinions on my hemangioma.

    the one thing you DO need here is clarification of just what this actually is. if you are getting nowhere with this particular doc(what type of specialist is this ortho or neurosurgeon?) my best adivce to you would be to get a referral to another doc to see what 'they' have to tell you along with hopefully some more in depth testing too. the best place that i went for MY answers was to our local teaching university who has really an amazing hospital, along with MANY more rescources they can use too to help define the 'wierd stuff'.. that is where I found MY answers.

    depending upon just how much/many of any given "finding' a particular specialist actually sees in their overall practice is really what gives THEM their best overall knowledge, experience and the correct info for the patient as well. if you DO live by any good teaching hosp(even if it is a couple hours away, it may be way worth it), this IS where i would try and see either the head of neurosurgery or ortho depts.

    there just ARE many other types of tests and scans that can be done on you that would much better define just what it is you even have there and if there realistically is anything you can do about it, or if it even is something to really HAVE to worry about for your future. but DO seek out some other opinions on this, seriously. that truely IS the only real way YOU are going to find the real answers, and any real peace of mind, along with what this means for you. they have to actually fully test something before anyone can tell you what it may mean. its called 'getting a real diagnosis of your problem" something you ARE owed when you seek out help from any doc.

    if this doc does not simply even know enough about any of the 'possibles' that showed up in the two seperate MRIs done, YOU will NOT be getting the best possible info that you just do need right now.

    while this may well be nothing to worry about, you still do not even have a definitive Dx to go on yet as to what this just 'is'. and that wont let 'you' rest inside your head until you just 'do' have some answers. believe me, i know that much. it is just how we are as human beings. we want to know what is inside our bodies that may or may not actually be any type of real problem. this doc is doing you no favors by not taking YOUR real concerns/worries more seriously right now. and you DO deserve better care than that.

    just keep pushing things until YOU are satisfied that you finally really just know what that thing 'is' and what it means for you. sometimes in order to just get our real needs met out there in the old medical kingdom of 'specialists", we DO have to get in peoples faces, get a lil pushy for answers and also just "humanize ourselves" to these people and make them understand OUR side and how WE feel. done that too. just make 'you' and your situation 'stand out" to someone at a new docs office, it does help.

    i DO wish you luck with this and getting to the 'right' person who can tell you without a flippin doubt just exactly what this is, and what it means for you. it may be a nothing or a something, but that is what you do NOT even know yet but deserve to just know. marcia
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    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.

     
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    Old 01-26-2012, 09:21 AM   #4
    jennybyc
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    Re: Anyone with any experience with this?

    Marcia....would you agree with me that they chances this is malignant is probably nil since it hasn't changed in size over a 6 month period of time? That would be my biggest fear. I know the uncle in my family who had adult onset osteosarcoma(far more frequent in children), it grew very, very rapidly.

    What do you know about cancerous bone tumors?

    Jenny

     
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    Old 01-26-2012, 10:38 AM   #5
    lilysmom1021
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    Re: Anyone with any experience with this?

    Thank you all so much for the thorough and quick responses! I feel a lot better that you guys think that it would have defintely grown by now if it were malignant, i do have a teaching hospital somewhat nearby and will look into possibly getting it checked out further! Thanks again so much!!

     
    Old 01-27-2012, 10:40 AM   #6
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    Re: Anyone with any experience with this?

    I had an mri 5 years ago that showed an atypical hemangioma on my spine, it was noted by the radioligist but the dr. never brought it up so I asked. Neurologist said it was nothing and thats where its been ever since. Oh well?!
    Good luck and take care.
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    Old 01-28-2012, 08:30 AM   #7
    feelbad
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    Re: Anyone with any experience with this?

    honestly jen, i sat here for over 45 min typing out a response and when i hit the post reply button, instead of my post popping up, i got a 'database error'. what fun. then i just could NOT for the life of me get back on, or even get back that post. so here i am today.

    since i really do NOT actually even know too much about actual bone tumors i really cannot say much about them. but just using a more logical and common sense approach to your question, i would 'think' that if this were malignant, that within that 6 month period of time, that "something' would have simply 'changed' in at least SOME shape or form. if there were absolutley NO, even lilttle subtle changes there, then i would have to tend to agree. but again. this is strictly common sense logic and in NO way from actual knowledge of, ya know? all i really know is that tumors can be strange lil buggers and do whtever their "tendencies' are per THAT type of tumor. but this definitely needs a PROPER Dx.

    LM? if i were you, whatever this current specialist just is that you have been seeing for this, call that office and ask for their medical records dept so you can obtain ALL of this docs records/clinic notes from him to read thru yourself. they have to make some form of actual "notes/record" from every visit they have with any patient, just like our primarys do too. these just may contain some better, more specific info that the doc wrote down about what HE really feels(HIS 'impression) about YOUR area where the problem is. i always get everything from any doc or specialist i see along with any and ALL testing reports on things done on me too. and keep getting all info from any further tests and any other docs you will see too. this just gives YOU and any furture docs a much clearer record of this thing from its showing itself upon film and on. it is very easy to obtain our records.

    i do hope you can see a 'good/knowledgable specialist who is willing to actually GIVE you what your ins co is also paying for, just a real Dx of what that is.

    you never mentioned just exactly where within i am assuming your c spine(since that is what the MRI stated)levels this thing is located at? where is this located c 1-7? it should state the location level on that MRI report. knowing the location just would be helpful to know too.

    what 'type' of specialist HAVE you been seeing about this, an actual neurosurgeon or ortho or some type of spinal specialist? believe me, that can matter alot too depending upon what this thing actually is and what type of specialist you had been seeing. their own levels or real understanding and knowledge are usually more adhered to 'their' own specialty in certain ways and not always the 'well rounded' type of understanding you would simply 'think' or assume they just 'should' know about. and that is why i ended up with getting three totally seperate opinions. and mine were ALL neurosurgeons, since what i had needed an actual neurosurgeon for the vascular reasons alone. but VERY differing in how 'they" each saw my angioma IN a spinal cord. good luck hon, and DO keep us posted, 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.

     
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