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    Old 10-18-2006, 01:53 PM   #1
    dawnbreck
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    Cavernous Angiomas

    Hi, I was wondering if anyone else out there might be going through what Im going through. I have a rare brain disorder called cavernous angioma. I have had one brain surgery to remove one and just found out I have another one which they can not opperate on. I have seizures now and bad headaches, along with other problems.If anyone has gone thru this please let me know. thanks, Dawn

     
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    Old 10-19-2006, 05:04 AM   #2
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    Re: Cavernous Angiomas

    Hi dawn,yes,i have had some pretty extensive experience with cavernous hemangiomas,had/have one inside of my spinal cord.they did a surgery to try and remove it but still had to leave about ten percent of it behind because they lost the nerves to my legs and one never came back on the monitor so they cut their losses and backed out,which i am very thankful for as if they had gone ahead,i would be sitting here in a wheel chair for sure.

    unfortunetly i have to be at a doc appt this morning so i don't have a whole lot of time right now,but if you have any questions for me,please don't hesitate to ask.i will most certainly answer them if i can.hopefully tomorrow.i just don't have alot of time right now but wanted to let you know that i DO know about them,but in the cord not the brain.take care,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.

     
    Old 10-19-2006, 09:14 AM   #3
    dawnbreck
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    Smile Re: Cavernous Angiomas

    Hi Marcia, Thank you for repling, I am glad they desided to stop when they did. Thats good news. Yes I have been dealing with this illness since January of this year. I had a grandmal seizure(first seizure ever) on my golf cart at work. I fell right off of it spashed my face alittle and dislocated my shoulder. They rushed me to the emergency. Little did I know that would be the beginning of the tough times. They did an MRI and found the first lesion on the left side of my brain it was huge about 6.9cm by 5.9cm. That was hard to swallow. Anyways had my surgery in March they removed about 1/3 of my skull and replaced it w/ titanium mesh. I recovered pretty fast. I have had quite a few side affects,memory loss, headaches,etc...Just when I thought things were going to get back to normal, they found another one, 3.9 cm in my frontal lobe,its sitting on my sinus vein,Well I have had bad headaches and 7 seizures in this last month, Its been a trying time for me and everybody who loves me. There not going to do surgery on this new one unless they have to. When I had these new seizures the new nuero(fired my other one)put me on trileptal 600mg. Was doing fine,then I had another seizure, so he raised it to 1200mg, it has been hell, could not function at all, so he has back down to 600mg, still not all that well. I am off work for a week, but considering more time off. I would sure like to talk to you some more, do you have seizures now? How has this effected your life? I would like to know! Sorry for the lnog letter, but I like telling my story, it helps me cope and heal.....Thanks again for repling to my message, hope to talk to you soon....Dawn

     
    Old 10-22-2006, 06:34 AM   #4
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    Re: Cavernous Angiomas

    wow,that was one huge angioma you had removed.the one in my cord was about 2x4x6 mms.but in the cord,that was pretty big,it also kept getting bigger because of the bleeds i had.i was told that if it bled again,which it most likely would considering i was what my NS called me,an active bleeder when it came to just the cavernoma itself,the third one would most likely paralyze me from just below the breasts on down.soo it was either wait and have that eventually happen or to have it removed under very strict monitoring circumstances.the big issue for me tho was the location of it in my cord.it was fairly close to the cord wall,which was a really good thing,but not in a "favorable' spot for resection due to the fact that the nerves that ran to the fine motor functions in my hands and the nerves that went to my legs,just happened to lie right between the cavernoma and the wall.so he would have to go thru those in order to get to it.great choices huh?i really real;ly did alot of research(thank god for my PC) and went around and around with this in my mind and spoke to alot of really important people in my life in order to try and come up with the best option.i decided to have it removed,mostly to rid me of the hidious pain it was causeing me right under my R shoulder blade that felt like someone was trying to pry off the blade with a crow bar or something.it was there 24/7 and driving me insane.unfortunetly no one told me that the surgery itself and the definite spinalcord damage to the spinal tracts in there could cause me even worse types of pain syndromes.they happened,and boy do they ever suck and are extremely hard to treat as theydon't respond to narcotics at all since they are neuropathic in nature.so it was off to the pain clinic where they have been helping me alot inmany ways,just to get the paindown to where i don't feel like jumpimg off the nearest bridge.it has been a pretty hellish road for me becaue of the freakin surgery and the extensive damage it caused to many areas.but i am manageing.

    you know,believe it or not,having the cavernomas inside the brain is actually one of the best places(i mean if you are going to have to have one,the brain is the best place you want it,really)only because there is room for the bleeds and for growth.the absolute worst place,would be the pons area of the brain as it is way too dangerous to even attempt a resection there,most NSs wont even consider it.there are just too many very vital functions that could be damaged upon even cutting that area open.the second worst spot is in the spinalcord mostly because there is just no room there for the bleeds and constant expansion they cause.there is no give or flexability inside the spinal cord.the damage i suffered was mostly just due to the sugery itself.

    i have never had a siezure from mine since it is in the spinal cord and not the brain.not all cavs inside the brain will actually cause siezures,some people have absolutely no symptoms at all and never even know they had one til it just happens to be found upon autopsy or by some sort of scan done there for another reason.thats how mine was actually discovered.i was having an MRI done on my c spine since i knew for sure that i had herniated a disc just by the symptoms i was having.sure enough,my doc calls me like the next day which kind of scared me ince they don't normally call that soon.he said yep,i had a herniated c 6-7 but they also found what they thoguht at that time to be an AVM? or arteriovenous malformation.the avm is kind of the counterpart to a cavernoma.while a cav is venous fed,the avm is arteriorly fed which makes a huge difference in the amount and the danger of the bleeds simply becaue arterior blood is always under high pressure while a cav is always low pressure,when a cav bleeds it is more oozy rather than the flush or spurts of the avms.it wasn;t til i had to have the angiogram done to see if it would light up on the screen that i found it was in reality only a cav.i thought we were going to be okay since i didn't actually have the avm,silly me.

    the best thing to do is just to find out as much info as possible about what you are dealing with.thats what i did,and after the surgery i had alot more research to do just to try and figure out whay a;ll of this really ***arre and totally off the wall kinds of neuro wierdness was happening.once your spinal cord has been damaged,wow do things ever get just soooo out of the norm inside of your body.my sympathetic nervous system was also damaged so thats causing its own little hell in here.it also triggered a really excruciating condition called RSD? its plain ugly types of really horrid pain that doesn't respond well at all to the standard strong narcotics,except for this really nasty deep bone ache,but the constant burning inside my knee is really the worst.i am also taking anti siezure meds,but its just strictly for my neuro pain.it works on the nerves very similar to how it works to prevent siezures?by calming down the out of control nerve signals that in you,will trigger siezures,but in me,it triggers pain.kind of freaky,huh?

    you know,if the triletal isn't working well or giving you too many intolerable side effects,geez,there are tons of different types of ani S meds availiable for you to try.they all are just a biot different and also vary ALOT in the types of side effects.i have tried about four and now as of thursday i am trying a different one again.but you can discuss this with your doc about at least trying others til you can find one that works for you without the side effects.these types of meds all will have their own little ways of working and some are just more compatable to your particular body and brain than others.it really IS worth it to look at other options.some of these that i have tried have been just totally overpowering as far as horrid side effects and some have been much much better,you just need to work with your doc and try different ones til you find a more tolerable one that works best for you.they are not all created equal,trust me.your neuo knows about the different ones,see what he says.

    when trying to find info on these cavernomas?there are many different names you can use,some will give you different info just by looking up info using one of the different names.try using cavernoma,cavernome,angioma.hemangioma,c avernous hemangioma,or even vascular malformations.trust me,i have looked up a ton of info by using these different words for the same exact thing.also using combos like cavernomas brain,and stuff like that will help alot.but the biggest thing is just obtaining the info you need so you can really understand what it is you have and will also be able to make much more better informed decisions when it should come time to possibly have to do something,or an interventional procedure of some sort.

    i wish i could give you more info on your particular type of cavernoma being in the brain.but the cord and the brain are two seperate and very different areas that have their own special little quirks and ways of presenting themselves.I DO however have another vascular malformation in my brain tho that was discovered about this time last year.i was "gifted' with a wonderful brand spankin new aneurysm which my NS is pretty sure is related to my polycystic kidney disease.that particular type of kidney disease just makes sufferers be born with just naturally weaker blood vessels.he also thinks that is why my cavernoma developed in the first place.but this is just me and my particular reason for them.no one really knows for sure just what actually causes cavernomas and avms.they are just there somehow in certain people.some even will run in familiys.just plain wierd.

    i do hope i helped some.if you have any other questions that i may be able to answer for you,just hollar,K?good luck with the remaining cav,i hope it will just sit there and behave itself for you.but DO check into a possibly different anti S med.like i said,there are many different ones that may not cause the extreme side effects of the trileptal you are currently on.but the biggie here?inform yourself as much as possible and then priint off all the info to keep in a file so you have it all there inone spot to referance from if the need arises.thats what i did,along with obtaining all copies of all MRI reports and any other testing stuff and also all op notes from surgeries and the hospital records to go with them and all clinic notes and plain old medical records from every treating doc i have ever had.it really IS important that you have your own copies of all your medical records.if you should ever have to go to the ER or something,keeping all of your most recent records,espescially the MRI reports and other important stuff in a file folder really makes the trip much easier and gives the treating docs something to work from,ya know what i mean?it also saves a heck of alot of time,which in your case,could be crucial in the event of a more dramatic type bleed.its just a bit of security that you can take care of for yourself.my folder goes everywhere to all appts and any possible er visits. just a suggestion.take care Dawn,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 11-05-2006, 06:49 PM   #5
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    Re: Cavernous Angiomas

    What is a cavernous hemangioma as opposed to a large benigh hemangioma which they said I had on the T-12. There were no measurements given?

     
    Old 11-05-2006, 09:23 PM   #6
    dawnbreck
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    Re: Cavernous Angiomas

    Hi, A hemangioma is a benign tumor, a hemangioma can be anywhere in the body and usually doesnt cause problems,unless its on or near a vital organ.And a cavernous angioma is a deeper hemangioma. A cavernous angioma or hemangioma is in the head or on the brain ,which can cause bleeding on the brain, which of course can be very harmful. Mine are in between my skull and the covering of the brain. I had one brain surgery in March and another one they cant operate on.Wheres yours at? What does your radioligy report say? It might help me answer your question better. Hope I was of some help. If you want write me back.

     
    Old 11-05-2006, 10:14 PM   #7
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    Re: Cavernous Angiomas

    Thanks, I can usually google stuff but I really couldn't find the difference. Mine is in the lumbar region of the spine. T-12 they said on radiology report. It just said large benign hemangioma. None of the Doctors have mentioned it that read the report and I didn't read the entire report till I got home. Appreciate the info.

     
    Old 11-06-2006, 10:15 PM   #8
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    Re: Cavernous Angiomas

    Hi canyondweller, what do your doctors plan on doing about this problem, I know of people have had it near there spine and have a serious problems,not to scare you,but to make you aware. Do you have any more info yet. Do you have any symptoms?

     
    Old 11-06-2006, 10:20 PM   #9
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    Re: Cavernous Angiomas

    Just in case you dont know T-12 is part of the MRI. They did a hyperintence T2 MRI on me. Some of there info is very helpful. If I find any more info I will let you know. Let me know if you have anymore info from your doctor or your reports.

    Last edited by WanderingMod; 11-07-2006 at 06:40 PM. Reason: Please read and follow the posting rules. Links to commercial websites are not permitted.

     
    Old 11-06-2006, 11:07 PM   #10
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    Re: Cavernous Angiomas

    What do you mean it is part of the MRI? My report says "incidentally, noted is a large benign hemangioma in either T12 or L1 vertebral body" No one has even mentioned it to me but I do have an appointment with a orthapedic specialist in spines to see about the neck problems and some unidentified problems I am having. Have that in a week so will ask him. I think I will get copies of the MRI to take with me. This was found when I had a Chest CT done. I dont know what signs there would be. I don't have any back pain. It doesn't sound like anything I really need to be worried about . I am 70 and they are not about to just run in there and start operating especially because I have emphsema. I will definetly bring it up with the spine surgeon I am seeing though.

    Last edited by Canyondweller; 11-06-2006 at 11:14 PM.

     
    Old 11-07-2006, 07:17 AM   #11
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    Re: Cavernous Angiomas

    hi canyon,sooo from what you mentioned,is this actually within the vertebrae itself and not actually inside the cord itself?thats what it sounds like and believe me,that is much much better for you.if it was actually within the cord itself it would have stated somthing like 'an intramedullary" type of cavernoma.this IS good news for you really.you DO NOT want one of these little SOBs inside of your cord like mine was.thats a whole different nightmare.i cannot believe tho that your doc didn't find this important enough to actually tell you.what an idiot.this IS something you want to know about,geez.some docs are unbelievable when it comes to actually giving you info from your own MRI reports.thats why i started getting and keeping my own copies of everything,down to all of my docs medical records on me,every scrap i could get my hands on,just so I know whats up.

    in most cases,espesscially where your angioma actually is,you wont always have any actual signs or symptoms of them.thats what makes them kind of scarey.you don't know they are evn there til you just happen to have an MRI done for something else and it comes up as an "incidental finding" on the report.this is exactly how mine was found too.i had a herniated disc and it just happened to show up inside the cord right underneath my herniated disc.wasn't expecting that one at all.its kind of been all downhill from there.

    i would most definitely obtain a copy of that report and discuss it fully with this new ortho doc.considering the location,you may be better off just leaving it the heck alone.as long as you are not suffering any actual symptoms from it,why mess with a sleeping tiger,ya know?good luck on your appt and please let me know what you find out,K?take care canyon,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.

     
    Old 11-07-2006, 09:13 AM   #12
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    Re: Cavernous Angiomas

    Hi Canyondweller, I was wrong I was mistakening the T-12 w/ a T2 MRI imaging. Sorry about that. and Marcia is right, you might want to get more info just so you know whats going on. Ive had to force my nuerosurgeon to explain to me whats going on. My angioma is inside my head as you know. I really dont know much about them near the spine. Marcia would know more then me. Thanks, Dawnbreck

     
    Old 11-08-2006, 07:55 PM   #13
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    Re: Cavernous Angiomas

    Frankly I don't think that he would have even noticed it in the report since it was not in the diagnosis part of the report. I was barely mentioned. I think they only read the last page of long reports which give the diagnosis. I assure you he is not stupid by a long shot. I had to cancel my appt with orthopedist as the one I had the appt with does not do neck and that is where I am having the problem now so when I get an appt with the neck Dr. I will address it with him. It seems whenever you get a report there is always something weird on it. not necessairly dangerous but who knows what is going on it us. LOL. I will follow up but right not need to get some resolution to the neck spasms.

     
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