Living With Cavernous Angioma

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My name is Shannah, and I was diagnosed with cavernous angiomas right after my 18th birthday (I'm 27 now). I was at school eating lunch when I began bleeding in my head. My symptoms started with a headache, then my vision became blurry, and I had this feeling of being disassociated from everyone. Like they weren't real or I wasn't real. I lost consciousness at some point and wasn't able to tell my nurse what color shirt she was wearing. I even thought she was my cousin for a moment. The school told my mother to rush me to the ER because it was serious. The local hospital told us I was bleeding in the brain (though by then it had stopped for the most part and I was starting to become lucid again) and they sent us to Memorial Herman Hospital in Houston.


I didn't have insurance but a doctor there was curious enough to see me for free. Of course once he diagnosed me with cavernous angiomas it was time for me to leave. We weren't really given much information about cavernous angiomas and mine in particular. He said I had a previous bleed spot somewhere else and that I could live to be 91 and never bleed again. Or I could die at 19. It was hard to say. Which was helpful.


Since then I can't say for certain if I've had another bleed. My last MRI was 3 years ago and at that point they said my angiomas were stable. All 8 of them. And I also don't know if I started out with 8 of them or not. Or if they've grown because my visits with neurologists have been spotty at best. But I do feel as though my symptoms have gotten worse over the years. I haven't had seizures and from what I've read I've actually had it pretty good compared to other people. My only issues are head aches. I get them almost daily now and have for the past three or four years. And the type of headache varies too. Sometimes it feels like my brain is going to explode and then sometimes it's an indescribable head pain. Those are the worst. It's like a bolt of lightening is zipping through my brain. They're so shocking and painful that I'll stop what I'm doing and stumble and cry out. I've tried explaining these pains to different doctor's before and they all look at me like I'm insane. And I've never talked to anyone else who has angiomas before to see if they go through this too. In fact I've never met anyone who had even heard of the condition.


So that's pretty much the extent of my symptoms. Only on a few occasions will I get anything more exotic than that. Such as my facial muscles became partially paralyzed for a few hours and I'll get blurry vision. Or I'll have a headache that will last for two weeks, and it takes the intervention of God and an acupuncturist to make it go away. I've been nauseous for days and unable to walk before. That's usually accompanied by a migraine so intense I could swear I was dying. But even after the migraine leaves I'm still nauseous so I can't say if the two are related. The doctor's aren't very helpful in those situations and like I said, I've never been able to talk to anyone else with angiomas to ask them their story. So I'm really glad I found this site.
Hi Shannah,

Welcome to the forum. You have found the best place in the world to share your stories and experiences. We all suffer from the same, and understand what you are going though. Even though not all of us have the same symptoms, many of us have something similar. Any questions you have can be answered here by many of us that had these ccm`s for years. I myself only joined earlier this year after been diagnosed with multiple ccm`s, including one in the pons(brain stem), and I have learned a lot since I joined form great members such as Kirk, Libby, Linda and many others. You will get to know them soon..

Hang in there...recovery is slow and sometimes disappointing. remember you are not alone.

Again welcome to the forum.

Henk :cool:
He said you could live until you are 91 without another bleed or die at 19.  He might have been a nice man to see you, but that wasn't imparting much wisdom.   It is kind of like saying you might have a fatal car accident, and then again, maybe not.  The reality of the situation is that most people do not die from cavernous angiomas.  Cavernous angiomas are like little balls of capillaries and so there isn't much blood pressure there.  That is why they ooze or bleed and don't explode.
     I would like to recommend that you read the angioma.alliance.org site especially for those newly diagnosed.  I know you are't newly diagnosed, but you are badly in need of info.
     Do you have insurance yet?  I know there is a good doctor on cavernous angiomas in Dallas.  His name is Dr. Samson.  I believe you can send him your scans and he will tell you his opinion. but I haven't seen the particulars on where to send them.  Someone on the forum must know.  You can also send them to Dr. Spetzler in Arizona, but in either case, you would want to send them a current MRI.
    I think that headaches are a hard way to predict bleeds as headaches are caused by so many things.  Some of which can be cavernous angiomas, but when you start talking about paralyzed face and blurred vision, you are probably talking about symptoms of cavernous angiomas.  Most people on this site have headaches, but a few of us on this site don't have seizures.   It depends where they are  and we don't know where yours are.
    Please keep writing and asking questions.  I remember how amazing it felt the first time I realized there were other people like me out there!
I had said Samuelson.  His name is Samson.  Forgive me!
Hi Libby and Vandy. Thank you for responding! I really appreciate it.

And Libby you are so right. The doctor was really nice to actually see me free of charge, and I'm really lucky to have been diagnosed. (From what I've read on this site most people don't get diagnosed.) Because when I get extreme headaches and I have to go the ER, I'm able to tell them I have cavernous angiomas. So the ER docs actually give me CT-Scans and take me more seriously instead of just saying I'm over reacting to a bad migraine. So I'm really thankful that the doctor was kind of nice to see me. But what would have been even nicer is if the doc had told me something informative about cavernous angiomas.

So is it actually rare to have a bleed when you have cavernous angiomas? And how do you really know if you're bleeding? There are times when I get extreme symptoms and I think I should go to the ER, but I usually talk myself out if and think I'm over reacting. It's just hard to know when you should take something seriously.
I really don't know the stats on bleeds, but Kirk or Vandy will.  Personally I had a bleed in 87, a bleed in 99. a bleed every year for the next 7 and now no bleeds for 4 years.  I also have multiples.
   How do you know when you have had a bleed?  I think you just kind of learn how you react.  Some are easy.  I know I have had a bleed if I am thinking like someone removed my brain, put it in a blender, and put it back in upsidedown.  I call my neurologist.  If I suddenly can't use one of my legs, I call the neurologist. I have my own little personal rule.  I know that lots of symptoms come on in the late afternoon or evening when I have very little or no cognitive energy left. SO if it isn't one of the ones that I know is a bleed, I go to bed with the understanding that I will call the doctor in the morning if I wake up with the same thing.  I don't think I ever have.
I don't think there are any reliable stats on bleeds. My guess is that a lot of bleeds aren't noticed because they are so small.

Everyone's symptoms from bleeds are different as well. I get a headache in a very specific spot (I have brainstem CAs), and it's followed, in some cases, but fatigue, numbness, etc. But I had a headache for much of the day a few days ago, without any of the other symptoms. So what's a bleed? One where blood oozes, or one where enough blood oozes to cause symptoms?
Kirk is right, there are no real stats, because it is an individual experience. Yes, they will say that after your first bleed the chances for a second bleed are 10% in the first year and then diminishes after that year after year. For brain stem bleeds a second bleed in the first year is estimated(by several different experts) to be anywhere from 25% to 40%. Any real data is not available, and this is due to the fact that nobody really knows what causes bleeds in the first place.

Besides there are also different types of bleeds, if I read the literature right. They make a distinction between bleeds inside the lesion and outside the lesion (intralesional vs extralesional) In the extralesional bleeds, blood actually exits the blood vessel and does damage to the neurons. This is visible on the MRI as the black area surrounding the ccm. Hemostat is the blood product that stays behind after the body reabsorbs the blood. Symptoms may be noticeable and then may not be. Intralesional bleeds cause the ccm to grow in size. No blood leaves the blood vessel and no direct damage is done to the neurons. Any symptoms caused by these bleeds are related to the pressure the ccm applies onto the neighboring neurons. Again you may notice this through symptoms, and then again you may not. This blood can dry up and the ccm may shrink again. It is for this reason they make the comparison that the ccm looks like a raspberry with blood products of various ages. The ccm goes through this cycle of intralesional bleeds and drying up, growing and shrinking through its lifetime. Some people in the general public have this happen to them, but experience maybe nothing more than the odd headache, and will never know that they have ccm's. Some people will have more serious symptoms, some very long lasting ones. It's probably the extralesional bleeds that seem to be the culprit of more serious symptoms that are longer lasting.  

Like Kirk I have multiple ccm's and one of them in my brain stem. This one bled for me in January, and most of the symptoms I got from this bleed I still have today, now almost 8 months later.
I have had more severe headaches for the past three days, and I hope it is somewhat better today. I noticed that the tingling in my left foot got a bit worse, so I do think I had a very small bleed again. Is it extralesional or intralesional? I don't know. Time will tell whether the symptoms will dissipate or not.

Remember always: When things get out of hand see the ER department and have a CT scan made, followed by an MRI. The neurologist can then discuss this new data with you. When you don't trust it seek help. Explain what condition you have and they will find some answers for you.

Henk     :cool:
Thanks for the stats.  I have never heard of the two kind of bleeds before.
   I also deal with it differently.  If I have bad trouble, I call my neurologist, we talk and I either see him or have an MRI first.  It is cheaper then going to ER and easier.
Henk and Kirk and Libby have it covered pretty well. This is off the angioma alliance site.

http://www.angiomaalliance.org/pages.aspx?content=69&id=60
My only issues are head aches. I get them almost daily now and have for the past three or four years. And the type of headache varies too. Sometimes it feels like my brain is going to explode and then sometimes it's an indescribable head pain. Those are the worst. It's like a bolt of lightening is zipping through my brain. They're so shocking and painful that I'll stop what I'm doing and stumble and cry out. I've tried explaining these pains to different doctor's before and they all look at me like I'm insane. And I've never talked to anyone else who has angiomas before to see if they go through this too. In fact I've never met anyone who had even heard of the condition.


So that's pretty much the extent of my symptoms. Only on a few occasions will I get anything more exotic than that. Such as my facial muscles became partially paralyzed for a few hours and I'll get blurry vision. Or I'll have a headache that will last for two weeks, and it takes the intervention of God and an acupuncturist to make it go away. I've been nauseous for days and unable to walk before. That's usually accompanied by a migraine so intense I could swear I was dying. But even after the migraine leaves I'm still nauseous so I can't say if the two are related.


Shannah,
I get headaches that bad also.  Not many of us do get them quite this bad, ot at least those diagnosed.  I had migraines for years before my bleed 3 years ago at age 30.  I sometimes have hemiplegic-type migraines, where I have one-sided weakness.  They have lasted a week to two weeks at a time.  I average at least 15/30 days amonth 3 months out from my last small bleed.  I also get very nauseous with my headaches, before, during, after.  I have that spot, where my big CA bled badly.  That's all related to the migraines that go along with CAs.  I also get sinus problems, light and sound sensitivity, exhaustion, mood changes, strange visual changes all through.  All this and I'm on a preventive med as well as something for when the headache strikes.

Let me know if you have any more questions.  I've only had 1 seizure and 2 bleeds, but I've had hundreds of headaches.

DeeAnn
Familial CAs in L Thalamus, L occipital lobe
Quote (kirkmc @ Aug. 26 2010,06:04)
I don't think there are any reliable stats on bleeds. My guess is that a lot of bleeds aren't noticed because they are so small.
Everyone's symptoms from bleeds are different as well. I get a headache in a very specific spot (I have brainstem CAs), and it's followed, in some cases, but fatigue, numbness, etc. But I had a headache for much of the day a few days ago, without any of the other symptoms. So what's a bleed? One where blood oozes, or one where enough blood oozes to cause symptoms?

I agree. How do the `stats`help us anyways when each CA is different and unpredictable, especially if one has multiples. When I was diagnosed the cheif of neurosurgery gave me about 5 mins of his time after waiting in the hospital to see him after a long wknd and he confirmed a CA. I had no clue what they were, only til I found this site. So because the surgeon did not take the time to explain things to me, I went almost a year thinking that this thing could explode in my head at any second and kill me-not the case. I think the initial doctor you saw was curious but probably did not know much about CA`s-he shouldn`t have said that to you.

Shannon, you said your last MRI was 3 years ago. It sounds like you`ve had CT`s since-what have they shown.
When I had a gross hemorhage (same as what Vandy mentioned about extralesional bleeds), they said had my lesion was the size of a golf ball...but for a week after it bled and the CT was done, believe it or not, I had no headaches or other symptoms (except speech problems due to the location). So I recommend that if your headaches are as bad as you say, then you should get it checked out.  Doctors say that if I get a bad headache that makes me nausous and even vomitting, that`s when I should go to the ER.

Quote
So is it actually rare to have a bleed when you have cavernous angiomas? And how do you really know if you're bleeding?

All CA`s react differently. Will all of yours act the same-probably not. They always told me that I was `lucky` because I would know if I had a hemorrhage because it would affect my speech. Headaches and worsening symptoms to me would justify getting another MRI.
I hope this helps, you`ve gotten some great advice from others on this thread-please let us know what happens.
Thanks Vandy for the information about the different types of bleeds. I seriously never knew that there were different types. And I've read that angiomas can grow but I never knew how. So thanks a lot!

And thank you to Libby and DeeAnn. For a long time I didn't know that it was weird to get headaches so often. Not until my friends started making comments that they thought I was strange and/or dying because of how frequently I felt wicked sick. After that I started feeling abnormal. It's nice to talk to someone who has daily headaches themselves and have them understand. So thanks everyone!

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