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  • cavernous venus malformation

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    Old 10-28-2004, 10:36 AM   #1
    bullun
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    cavernous venus malformation

    In December during a visit to the ER for a flu bug, it was discovered that I had this brain malformation. Its a gathering of extra blood vessels in the brain a cluste of them, not attached to an arterial and will may only rarely have a small blood "leakage" as the neurosurgeon's explained.

    Does anyone else have other experiences? Since they I have remained off birth control as fear that may affect it. Does anyone else have experience with this condition?

     
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    Old 10-29-2004, 05:52 AM   #2
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    Re: cavernous venus malformation

    i have/had one of the cavernous hemangiomas (antoher name for venous malformation,as well as cavernoma,angioma)inside my spinal cord.You are actually quite lucky(really) that you have this inside your brain as opposed to the other two most common areas for these to show up.the brain stem and spinal cord the other two are in most cases considered inoperable as they would cause more devistation to remove than to just leave them alone.i had to have mine removed as it was bleeding off and on and my NS decided that my next bleed,which he was pretty sure would come most likely within the next year,would most likely paralyze me from the chest on down.Mine was inside the cord at the C 7, t 1 area.the problem with having them inside the cord is there is no room for the blood to flow,so it stays in that spot and grows biger and bigger and causing pain and major neuro deficits.It was not an easy choice to make, believe me.My NS told me that because it was located behind two major nerves(the one to my fine motor in my hands and the one to my legs)i would definitely come out of the surgery with some significant neuro problems,but I really did not have much of a choice as to leave it in would have most definitely caused me major paralysis some time soon.

    i would say that unless the cavernoma is causing you major problems, your NS would most likely not want to remove it.But if you do have to have it removed, of course it would be major surgery but depending on where it is located exactly, it could be done without causing you major problems.has yours bled at all or is it been behaving itself?if you had to have some sort of lesion in your brain(not that anyone would actually choose this)a cavernoma is what you would want to have, believe me.it is not invasive and constantly growing as in a cancer, it is not high pressure like the cousin of the cavernoma called arteriovenous malformation (which I am sure was mentioned to you as a possibility at one time or another)this is also what they thought at first was what I had in my cord, but after an angiogram ,it did not light up with the dye so they knew it was not arterial)a cavernoma stays pretty much self contained and even when it bleeds, it is just kind of a oozy type bleed,nothing heavy or major in any way.i know you don't feel espescially"lucky' right now but you really are.It could be many times worse in many really nasty ways.most NS's will usually want to just observe them and monitor them and really offer no treatment,as there really isn't any.If anyone at any time tells you that you need surgery, run to another NS for a second opinon.you need to make sure that this is your only option before you let anyone actually cut into your brain.if I can be of further help to you please don't hesitate to ask, K?good luck,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 10-29-2004, 04:58 PM   #3
    bullun
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    Re: cavernous venus malformation

    Marcia,
    Thank you! It is so relieving to talk to someone else who has this. And I failed to mention or misspoke, my malfrmation was found in my brainstem area. Or at least thats how it was presented to say the least. I.e., if it was aterial and going to bleed heavily, it would definitely effect my ability to breath etc. Its in a very tricky spot, and they were extremely opposed to surgery. Luckily, it was not this type and as my neurosurgeon said (similar to your comment)it "seeps" blood. My concern is do they ever worsen?

    I initially went into the ER following flu like symptoms last winter, and facial paralysis. They were concerned that this bleed was new and had caused it. Fortunately it was Bells Pasly a viral form of facial paralysis that I recovered within a short length of time. However, the MRI's and new discovery of this bleed of course sent them into a frenzy. At the end of this by March, they informed me that this bleed was not new. I was born with the malformation, and it could of happened years ago, or months, but not VERY recent, but they of course will not say for certain. And would not assure me of reoccurence of bleeding.

    My concern is, since they initially thought tis was a stroke, do they ever mention to you that birth control pills may be harmful to this condition? I am also nervous that if I become pregnant, that the pressure of pregnancy can be an issue causing a bleed again? Granted this is not a arterial therefore bleeding is less likely. But certainly remains a concern in the back of my mind (no pun intended!)
    Thanks much appreciated.

     
    Old 10-31-2004, 04:35 AM   #4
    feelbad
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    Re: cavernous venus malformation

    I don't know much about birth control and possible problems with the cavernoma,sorry.I would think that your NS would be able to give you info on that.And as far as the pregnancy thing goes,i had two beautiful bouncing baby boys with having mine and I did not suffer with any other wierd complications.i did not find out that I even had this glob of fun inside my cord until just recently(two and a half years ago?) This is actually the norm though from what I have researched.They say that a cav will usually present itself in some shape or form during the third and fourth decade of life.I was having horrid pain under my R shoulder blade but was also dealing with pretty severe radiculopathy from a herniated disc at the C 6-7.Didn't realize the pain in shopulder blade was from the cav until I had had an epidural steroid inj done for the disc pain and that actually got better but did not even touch the shoulderblade pain.It really stood out then.

    I am really sorry that your cav is in the brain stem.and I am really really sorry if what I stated about the cav being in the stem freaked you out at all.it is not one of the best spots to have one.But neither is the spinal cord and I have survived with that so far.I don't think in your case that surgery would even be an option,but I could be wrong depending on its exact location in your BS.I hate to even ask you this but have they given you a full spinal MRI?I am asking as the cavernomas can be muliple in some people.They can also be familial(inherited).It is very possible to have more than one unfortunetly.i hope that is not the case with you.Luckily I have not found any others lurking any where else.I am sorry if i could not offer you any info on your questions.I know that becoming PG without knowing that you have a cav lurking somewhere is way different than knowing about it and worrying about it.You will have to weigh how much you want to have a child Vs any possible risks.as far as I know, i don't think that becoming PG puts you in any real danger but I have not really researched this subject either.The best advice I can give you regarding living with this little SOB in your stem is to do as much research as possible on it.I have done alot,espescially when I found out that it needed to come out.I was an absolute demon on the PC for many months.I found no help at all at the library but found tons of info on the internet.Just dive in.unfortunetly the rules of this board prevent me from giving you any help with sites that I found.but they are out there.Just keep looking til you hit on them.if you have anymore questions that i MIGHT be able to answer, please post them,okay?good luck bull,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 10-31-2004, 06:06 AM   #5
    bullun
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    Re: cavernous venus malformation

    Marcia,
    Thanks once again you've been a great pool of info. Please don't be concerned about alarming me, I think my doctors did enough of that in the first few days of my hospital stay. In fact my follow-up visits one doctor even pretty much told me to live life to the fullest, since nobody knew how much longer I'd be around was the insinuation! Talk about a direct bedside manner. But I am much more comfortable with it now. Particularly since they inform me they are "pretty sure" I was born with this malformation (although I did read cav's peoplep are not born with?? unsure!) And that the "bleed" they spotted, was something very old nothing recent. Although they did say I was more likely to have a bleed. My neuorologist (a resident phy.) was very careful to not state any "positive" comments regarding it. As they can't assure you of anything with these which I understand.

    Initially they told me birth control would not be an issue, and that I could go back on it, 3 months after my doctors appointment as it was not a "new bleed" and the original taking of birth control didn't cause it. Out of my own caution I stayed away, but now out of need, but my PCP is concerned again.

    I didn't receive a full spinal MRI, but that may not of occured to them considering the rest of my condition. Not only did they spot a heart murmer for the firs ttime (as I was extremely dehydrated), I came in suffering facial paralysis (spawning the need for my first of many scans), they discovered the malformation AND a parodit gland tumor. Either of which they were unsure if wascausing the facial paralysis. I suppose allin all I've been very lucky. The facial paralysis was deemed due to a viral bug called Bells Palsy which self corrects and all movement returned. The tumor was removed 3 months later, and was benign, and left no permanent new paralysis. And hopefully I won't have any reoccurences with the cav!

    I guess my other question for you would be, since they didn't seem all that concerned that it could bleed again, do I need to have a follow up visit with the neurologists? They didn't suggest it, and I felt kind of brushed off somewhat. But if they're not concerned should I be? I should also mention I've been going to the University of Virginia Hospital which has a supposed great neuorlogy team, yet being a medical school also, you tend to perhaps not get the most attentive doctors as they are busy with using you as their guinea pig for their resident doctors. So I only briefly see attending physicians at the end of my visit.

    Also where you intially told upon discovering your cavernoma to stay away from physical activites, anything that would increase your blood pressure? I also was told that unless it was bleeding they would be VERY opposed to surgery and closing off the veins, as the complications could be severe (i.e., inability to breath on my own etc.) Just wondering if I should have ever gotten a second NS opinion on the potentials of bleeding later or multiple cavs...

    Thanks for the help again and reading my log babbling posts. I'll do some seraching on the net for more information.
    Dana

     
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