Has anyone had or have heard of cavernous angiomas? My son was just diagnosed with it and we are being referred to a neurosurgeon. I am extremely worried about this and would like to know what to expect. I have never heard of this problem before. Any info would be appreciated. Thanks

i had one of these little SOBs actually found in the middle of my spinal cord.just where is your sons located?alot of what to do about these really comes down to the location of it and if it has bled at all yet.in some cases it is actually better to leave them alone.when they do bleed,since these are veinous fed lesions,they tend to just ooze a bit.in most places it would not be a huge deal,even within the brain(location).but mine was actively bleeding off and on and being in the cord,it was going to eventually paralyze me so i really had a nasty decision to make about leaving it in or taking the hit that would come to my hands and legs by them going in and removing it.it just sucked really.if you could let me know just exactly where his is located and also whether or not it has bled at all?this would be stated as "hemosiderin staining'?on the MRI report.if you do not actually have a copy of his MRI or any other types of testing,get them and read thru them.any info you can provide for me would be much better to really give you the best possible advice.i am not a doc by any means but believe me,when you actually have something,you research the heck out of it.i would be more than happy to try and help you with this.just need some info.Marcia

Thanks for your input Marcia,
We just got the call from the doctor last night. He told us that it is in his brain and it is bleeding but it looks very small right now. I called the surgeon's office this morning and found out that they don't take my son insurance. We are waiting to find another surgeon. I don't have much info at this time. His neurologist said that the surgeon will probably want an angiogram done. He told me that the doctor may just wait and watch or want to go in and do surgery right away. My son is disabled and needs a lot of care so one more issue is really frightning. I am hoping to get the MRI results soon.

sorry for what you are having to deal with with your son.i am kind of in that same boat with mine as well.one big thing you need to be aware of about that angio the neuro wants done(quite frankly i am wondering why?)if this is indeed a cavernous hemangioma,it wont show up on an angio since angiomas are veinous fed lesions not arterial ones.an AVM is arterially fed tho.is he trying to rule out AVM here?if so,the angio would show for certain what is actually 'feeding" it.my very first MRI actually stated that my angioma was actually thought to be the dreaded AVM,but once the angio was performed and it did not 'light up' with the contrast dye,it was determined to be only the lower pressure cavernoma instead.that did lessen the actual risk when it would bleed again but unfortunetly even the tiny ooze type bleeds and this being within a very constrictred space with absolutely no 'give' my next bleed would have cut off the remaining cordspace and paralyzed me from the chest down so it had to come out.that caused alot of spinal cord damage for me but not nearly as bad as what would have occured for me eventually if i did nothing.

one huge thing here is to get more than one opinion since there are actually MANY really great neurosurgeons who really just do not have enough experience with these to really be able to truely give you all the real facts and the risks of them pertaining to where exactly your sons cav actually is.i actually consulted with three seperate NSs only becasue the first two gave me alot of opposing type of info.neither one of those two really knew all about these things to the degree the third opinion did,and he was the head of neurosurgery at the U of MN.this man had actually done many cavernoma resections from spinal cords and really told me all about the real risks i was facing.the other two were just not on top of these things like my third one was.

like i mentioned before,even if this has bled,in some cases(and this totally depends upon where it is located in the brain itself)it may be much better and safer overall just to leave it alone.location is everything with these little suckers.i would be seeing actual NEUROSURGEONS for consults not just a regular neurologist.you need that level of expertise that only a NS actually has.just try and find(you can ask when you call them to make any appts)out how much overall experience any of the NSs you call really has with cavernomas in the brain.

if you happen to live anywhere near a good university type teaching hosp this is where i would seriously try and get to.this was the place that gave me the best info and actually did my resection surgery.they just see alot more of this type of thing there than probably any other type of neurosurgey clinic would.the universitys are where people who have really rare or complicated brain and spinal issues tend to go to for help,therefore they just have much more overall experience and knowledge about treating them.just an idea for you.but you need to be seeing a real neurosurgeon so please don't try and find another ologist,K? they just cannot give you what you really need there.you just need to be seeing someone for consults who actually has been inside peoples brains,you know what i mean?

once you obtain that MRI report,please let me know just what it states about the cavernoma,K?if you have any other questions please don't hesitate to give me a hollar.i am usually floating around here somewhere,lol.good luck rusk,Marcia

Hi Marcia,
The MRI report states that there is 5 mm lesion in the left frontal white matter. It has elements of both methemoglobin and hemosiderin. I am totally ignorant of the vocabulary used. I also am having a terrible time trying to find a neuro surgeon because of my son's medicaid. It is very frustrating to be told that they don't take his insurance. But I will keep looking. Does any of this make sense to you? Thanx

while i know what hemosiderin is(a 'rust' deposit or iron deposit left behind from an old bleed)this was also stated in my initial MRI report as 'surrounding' my cav.but the metho stuff i had to look up and i still don't quite know for certain exactly what this is,but what i read in my tabers medical encyc was "a form of hemoglobin(blood product) in which the ferrous iron has been oxidized to ferric iron" sooo, there ya go.this sounds like some direct form of actual blood product as well in some way,or that what it is appearing to be to me anyhow.i think it is just what was also kind of left behind from the bleed just like the hemosiderin was ya know?i think this could just be more of a charchteristic of having the bleed possibly just 'in' the actual brain sort of thing?you just really do need to be getting much more direct info about your sons particular cav from a good knowledgable neurosurgeon.like i said,alot depends on location and the real risks of leaving it in vs actually having it removed.that all depends more on the risks of actual surgery and any direct possible damage that could occur just having it taken out.does your son have some sort of contact person at medicare or social worker who could help you with tracking down the right type of neurosurgeon?or just asking his current doc who has been ordering these tests for him?he or she could at the very least here set you up with someone who could help you to navigate thru all of this.i know there are people who do this but cannot remember just what they are called?a good patient advocate has to be somewhere there that you could at least tap into for info,you know what i mean?just some thoughts.

i am sorry i couldn't be of more help to you with this.i know what a helpless feeling it is to be in this situation with your son.once you get better info about 'his' particular situation it will help to at least KNOW something more solid,ya know?but PLEASE keep me posted on what you start finding out,i would be more than willing to try and help you sort it all out.take care hon.marcia

Marcia, thanks for the very informative information. With the help of several people we have an appointment very early Monday morning. My sister-in-law knows the surgeon's nurse and she (the nurse)has been very helpful about getting us in as soon as possible. I should know a lot more after this. I will update you then. How are you doing now that you have had the surgery? Any lasting problems? Do feel better?

Thanks again

Wanted to let you know that we saw the neurosurgeon today. He said the cavernous angioma is very small and deep within the brain. At this point it is not causing any problems so he just wants to monitor it for a while. While looking at my son's MRI pics he found something else that concerns him more. My son's brain stem is compressed and malformed. He wants another MRI done. This could cause more problems with his speech and walking if left alone. Geesh, we get one good result to find out that there is something else going on!

unfortunetly i know all too well how THAT goes.hopefully they will be able to do something to help this situation that wont be too overly invasive for them.sorry about that 'bad' part of the news.please keep me posted.hang in there mom.Marcia

Just wanted to let you know that we saw the neurosurgeon this morning. The news wasn't encouraging. My son's blood vessel into the brain is pressing on his brain stem. This is causing his speech and walking to regress. The doctor has suggested that surgery may be the only way to correct this, unfortunately it is extremely risky and he cannot give a long range prognosis. He said we should wait six months and then revisit the issue. As long as there is slow regression we have time. So now we have to decide what to do.