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  • CAVERNOUS HEMANGIOMA - anyone?

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    Old 06-30-2005, 01:03 AM   #1
    FUNKYHEADGIRL
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    CAVERNOUS HEMANGIOMA - anyone?

    Has anyone had or have one of these in the brain? MRI showed that I have one and its growing. Neuro just wants me to keep getting more MRI's to keep watch on it but these are expensive, even with insurance!
    Do these things ever go away or stop growing? I'm just looking for some info since the Dr doesnt really say much about it.

     
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    Old 06-30-2005, 06:01 AM   #2
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    Just exactly where in the brain is your cavernoma located?I had/have one inside of my spinal cord.of all the places that you can get these(the brain, the brain stem,or pons and the spinal cord.The 'best' place is actually the brain.not to say that it is a good thing to actually have a cavernoma but of all the places the area of the least danger in removal or complications is the brain area.Mostly because you would have room for a bleed.These do bleed from time to time but it is usually a slow bleed as this is made of of veins not arteries.So it is consoidered low pressure.there is another formation called an AVM that is much more serious as it is made up of a glob of arteries.This is what my NS first thought was actually what i had inside my cord.I had an angio done that did not "light up" so he knew at that time it was just a cav.Actually, unless the cav is causing major symptoms or is actively bleeding, your NS is doing the right thing just by monitoring it.this is what my NS was doing up til I started having bleeds and started having nasty pain and showing neuro symptoms.believe me, the last thing i ever wanted to do was to have someone digging around inside of my spinal cord,but to leave it in in my case would have ment almost guarenteed paralyzation when it bled again as it was already taking up one third of my cord.the best thing to do in your case would be to do alot of reasearch to try and really understand what it is you are dealing with and all of your possible options for treatment.Treatment may be just what your doc is already doing,monitoring it for any changes.Even if yours were to bleed, you do not have(unless you say different)it in a constricted area such as the brain stem or spinal cord.The spinal cord is actually the most dangerous to have it and trying to remove it.i suffered LOTs of damage to spinal nerves tracts and my sympathetic nervous system due to the surgery.luckily for you and the wonderful new techniques availiable to the nSs now a days, if you did have to have it removed, you most likey would not suffer the extensive damage that I did.how big IS your cav anyway?If you could tell me just exactly where this little sucker is i may be able to be a little more specific in giving info.the best thing about this is it is NOT like a cancer that keeps on growing and growing.If left alone,they 'normally" do not cause any major problems in the area you have it.Like i said before, even a bleed in that area would be very small at best and would not cause you the same problems as say a stroke or something like that.but every case is different and there could possibly something unique to your particular cav.if you have a good university teaching hospital nearby, i would recommend it highly to you for monitoring.I ended up going to the university of MN for my third opinion and when it needed to come out, I felt like i was in the best possible hands.i think a university hosp is much more up on the latest info and treatment options availiable.They would also most likely have the most experience in treating/monitoring the cavs and THAT is what you really want.Knowledge.some NSs don't really know alot about these(as i found out while researching mine and getting opinions)all of the other NSs that i had seen kept telling me that there was no way that my cav could possibly be causing this horrid prying/pressure type pain that I had been having under my R shoulder blade.Well, they were all wrong because they did not really understand just what in the heck they were dealing with here.so finding a good experienced NS is really vital.if you have any other questions just holler,K?just know that what you have is not any sort of death sentence or major major problem.Things could be much worse than having a cavernoma,trust me.If your NS has not mentioned this to you yet,and i did not find this out until after the fact, but try and stay away from taking any sort of med that would thin your blood such as aspirin, advil/aleeve,or Rx blood thinners as these can increase the chances of having a bleed.i was eating aleeve like there was no tomorrow while dealing with a herniated disc that was in almost the same exact area as the cav was,and was told that this probaly caused at least some of my bleeding problems.my cav was actually found accidently whan I went to have an MRI done to try and find out which one of my discs was herniated.This is actually how most are found,by accident when they are testing for something else,who knew??marcia
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    Old 06-30-2005, 09:30 AM   #3
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    Hi Feelbad,
    Thanks for the response. All I can tell you as to where the cav is is in the CLIVUS. I think this is near or at the brain stem but not sure. I tried googling CLIVUS and didn't get much info. Glad to hear you are doing fine after having this yourself!

     
    Old 06-30-2005, 02:10 PM   #4
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    The clivus is at the center of the skull base, near where the spinal cord exits through the foramen magnum to the rest of the spine.

    As for cavernous hemangioma -
    A google search can tell you exactly what they are.

    1. Most of the time, if they do cause problems, they will be a seizure, or less rarely a bleed within the brain.

    2. If they were to cause problems, like a neurologic deficit, then you would have to consider surgery to remove them. It's unknown what type of bleeding risk one may have with a cavernous angioma, but because they are low flow (low blood pressure in the vessels, thus less likely to bleed), one tends to sit on these. Many people often live their whole lives without knowing they had one of these, and can be present in up to 1 in every 1000 people.

     
    Old 07-17-2005, 10:59 PM   #5
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    I have some info that I hope will help you out. Please visit the following website: ( removed - please follow the rules for posting websites _ Our daughter has a rare tufted angioma.

    I will say that Dr. Milton Waner would be a great person for you to talk with or have your dr talk with. Or our dear daughter's previous physician, Dr. Denise Adams.

    God bless,

    ( removed - please do not post your real name )

    Last edited by moderator2; 07-18-2005 at 05:00 AM. Reason: please read and follow the posting rules

     
    Old 07-19-2005, 03:00 AM   #6
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    Joshua,

    Well thanks for trying to get some info to me - unfortunately it weas deleted before I could read it!

     
    Old 07-19-2005, 06:32 AM   #7
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    I'm very sorry. I guess I didn't understand the posting rules. The support network I was referring to is NOVA-National Organization of Vascular Anomalies.

    God bless!

     
    Old 07-20-2005, 02:05 AM   #8
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    Josh,

    NOVA - got it - thanks!

     
    Old 07-30-2005, 10:42 PM   #9
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    Lightbulb Re: CAVERNOUS HEMANGIOMA - anyone?

    Quote:
    Originally Posted by FUNKYHEADGIRL
    Has anyone had or have one of these in the brain? MRI showed that I have one and its growing. Neuro just wants me to keep getting more MRI's to keep watch on it but these are expensive, even with insurance!
    Do these things ever go away or stop growing? I'm just looking for some info since the Dr doesnt really say much about it.
    my wife is being treated right now for it.like you said they dont talk much about it.i can justtell you to be strong. they dont want to do a surgery unless it continues to bleed. is yours bleeding?

     
    Old 08-07-2005, 01:52 PM   #10
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    Re: CAVERNOUS HEMANGIOMA - anyone?

    I have a cavernous hemangioma in the lower left occipital region of the brain. I'm 44 and the first symptoms of any problems happened when I was about 16. I started to get migraine-like headaches. My dad suffers from migraine, so this was the thought of our family doctor. To be on the safe side he recommended that I see a neurologist.

    The neurologist ordered a CAT scan and I can still remember the technician handing us the pics (which look like black Polaroid pics) and said, "You are to go straight to your neurologist's office with these." You can imagine a 16-year old thinking she had a ticking time-bomb in the brain. I was admitted to the hospital to have an angiogram. I have small arteries and they had a hard time poking my groin. The intense burning pain in my brain was unbearable and I swore I would never have this done again. I was told that I had an AVM (arteriovenous malformation) and the neurosurgeon said that it does not appear to be bleeding, but to remove it would be risky since it is in the area of the brain that controls periferal vision. (I do have a slight visual deficit periferally from the center of my left eye to my nose and from the center of my right eye out to the right side.) The recommendation was to have frequent CAT scans to make sure the lesion was not changing in any way. I would have an occasional headache, but treated it like one would treat migraine.

    Several years later when I was in my latter years of college, I started to get the headaches more frequent and more severe. My neurologist sent me to his mentor (now deceased) at a renowned NYC teaching hospital and I then became a wonderful lesson for dozens of med students to look at, question, and do silly little neuro-tests with. I was not pleased since it was extremely hard sitting in front of these folks when all I wanted was a dark room with absolute silence. A CAT scan done at the hospital showed no change in the lesion. The "mentor" told us that they couldn't tell when this lesion started (I could have been born with it) nor when it bled. I should continue to monitor it with my neuro. In addition to taking non-aspirin pain medication, my neuro prescribed Dilantin to control the "aura-like" effects of the oncoming headache. (We tried a few other drugs--beta blockers, but I can't recall the names.) As MRIs became the latest technology, I had my brain imaged every year or so to make sure the lesion stayed the same. It did.

    This treatment continued until 1996 when my neuro told me about a procedure performed by neuroradiologists that was successful on AVMs called embolization, where an angiogram is performed and a glue-like substance seals off the feeder vessels of the AVM through the catheter. This time I went to an Ivy-league teaching hospital in Phila. Expecting the worst (having said I'd never do another angiogram), it was painless and over before I knew it (the advances of medical science-amazing), however, the angiogram showed that I did not have an AVM...it was a cavernous hemangioma. The chief of neurosurgery told me that there is less risk with cavernoma and it did not show any sign of recent bleeding. Add to that the precarious place that controls my sight, I should just leave it alone. This was bittersweet in that I had my hopes set on my problem being solved, but instead was no farther along and actually had a different type of lesion. He also suggested that I should wean off of Dilantin. I did as he suggested and 4 months later had my first ever grand mal seizure. My neuro said that the Dilantin was most likely controlling seizure disorder as a result of the cavernoma and had I not been taking it, I could have been having seizures all along.

    I haven't had a seizure since that time, I faithfully take my Dilantin and check blood levels, hardly ever get migraines (I hope I don't jinx myself), and see the same neuro, although I expect he will be retiring soon as we come up to our 28th anniversary together. It's just something I have learned to live with, but am still uncomfortable with the thought of a bleed or seizure or both (particularly since I commute 40 miles each way to work).

    Ironically, 3 years ago, a student of mine was having headaches and was diagnosed with a bleeding cavernoma, thought to be a result of some radical chemotherapy he had some years before. He had his removed and is doing fine.

    Best of luck!

     
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