Cavernous Hemangioma in Brain

[denmiccal]

I have a cavernous hemangioma in the right part of my brain. I am told it is two veins that crossed and bled at one point. I have epilepsy and memory problems. I went to a neurosugeon who told me it is too close to my motor skills to operate and that the surgery was more risky then leaving it alone. It is an old bleed, but I am still worried that is will bleed again. I have MRIs regularly and am about to have another one next week. The location has caused me memory problems, less brain activity on the right side of my brain. I have very mild (hardly noticeable) slight paralysis on the left side of my body.

My memory is getting a lot worse and I have a cloudy feeling at time in my head. I am not as sharp when I feel this way. It could last a whole day.

I guess I am venting here, but I want to know what my chances of my brain bleeding again and why my memory is getting worse now. I am going for neuropysch testing the end of the month and for lots of blood work. I feel like I am a guinea pig for the doctors.

Any help or suggestions?

Thanks.

[CCF-Neuro-M.D.-CS]

A cavernous angioma is a vascular malformation. In our body the vascular system has arteries that drain into capillaries which then drain into veins. A cavernous angioma is similar to a abnormal collection of very weak capillaries. Because the vessels are weak, they are more likely to bleed. The overall risk of bleeding is 0.5-1 % per year. These very commonly cause epilepsy. How this is causing your memory dysfunction is unclear. If you are on medication for your seizures, this may be contributing to your memory complaint.

Regarding treatment, I would recommend that you be treated at a large academic center. We see many patients with this disorder, including epilepsy patients. Therefore, if you are not being evaluated at a large academic center, it may be reasonable to have a consultation regarding any options you may have. Good luck

[denmiccal]

I have memory problems because of the location of the cavernous hemangioma.  I have more than epilepsy.  I have major memory problems not from the medicine.  I am getting full neuropsych testing this week coming up to see to what extent I have brain damage.  

I want to know if it is possible to not touch a cavernous hemangioma that has bled and just leave it alone.  Everything I have read says it needs to be taken care of by a surgeon.  I am afraid I am a walking time bomb in my head if I just leave it alone to bleed again.

[LZoe]

I also have been diagnosed with cavernous angioma.  My symptoms include sporadic seizures which are now halted by meds hopefully.  My first seizure was 3 years ago May and another 5 months ago August so they are very far apart.  The angioma is located in the right temporal lobe and in doing my research on the internet, that lobe is responsible for speech and auditory functions.  I have difficulty speaking at times and get my words mixed up.  I sound weird when talking to others.  I also get a bit dizzy sometimes.  Depending on when my angioma bleeds again is my speech going to get worse when/if it bleeds in the future if I choose not to have surgery?  I have appts. with three neurosurgeons to get a variety of opinions or is this too much?  What questions should I ask?  I feel as though I'm at their mercy and would like to be as prepared as possible.

[denmiccal]

Lzoe, please email me at ***@****.  I want to email back and forth with you.  I talked to one neurosurgeon.  Maybe I should talk to more.  When did you head bleed?  I need to ask you questions too.  

You are the first person who is closest to my problems.  I have memory issues, and other things associated with mine.  It is all about the area.

Sorry, it took me so long to get back to you.  I just go my email back up and running.  Looking forward to hearing from you.

[Jack III]

I'm a board member of a support and education group specifically dealing with cerebral cavernous malformations, Angioma Alliance (http://www.angiomaalliance.org).  Feel free to stop by, post your questions, and "chat" with others like myself who share your malady.

Jack

[PGriff]

I also have been diagnosed with Cavernous Hemangioma. The surgeon told me it was better lefted untouched because it is located close to my vision and I could go blind with surgery.

I have not had an MRI for 3 months and feel like things could go bad, if not monitored. I am a single mother of an 8 year old boy. I want to be healthy.

I also get my words mixed up and feel my memory is not what is was.
I also get visual disturbances, along with migraines.

Why do I feel so helpless?

[denmiccal]

Who else has a cavernous hemangioma that is being left alone?  I want to know why and find out how you are dealing with it.

The risk of bleed is very small, but I already bled.  So even if the chance of bled again is small, so was it the first time.  That is not any comfort for me.

[PGriff]

I am going to call the neurologist today, to see if sugests another MRI. I know I would feel better.

[denmiccal]

I get an MRI once a year.  Don't know if your doctor will do it more frequently then that.   It seems funny to me that we have to wait until it bleds again to do anything about it.

We just have to assume we will be okay.

[090308health]

Hi, I`m a 24 yr old female who was diagnosed with a cavernous angioma last week. I`m really scared too. I have a 21 month old daughter who is beautiful and so sweet, and this is robbing my time from her. I also have a great husband of only 4 yrs! I don`t want to die! I am already an anxious person. I started having nerve problems (tingling, numbness, twitching) after she was born in `02. No neurologists could find anything until I finally got a good one. He found this thing on my MRI & said it was in the left part of my brain. He acted like it wasn`t much to worry about, but how can one not worry. I came home and looked it up on the net, and have been hysterical ever since. Are these things a death sentence? Has anyone left one of these alone and been ok? Has anyone had surgery, if so, what was the outcome? Feel free to email me at: ***@**** It feels good to know I`m not alone in this at least.

[turbodsc]

Hello, I have read everyone's comments and concerns about being diagnosed with Cavernous Hemangiomas.  I was diagnosed with the same thing.  I had been having severe headaches, numbness and tingling in my left arm, and other minor symptoms.  I went locally to see a Neurologist in Huntington, WV and we scheduled and MRI.  They told me that mine had bled several times before, but hadn't within the past 6 months.  I proceeded to have MRI after MRI until the stress of just watching it was too much.  I was advised to monitor it until they thought it would have to come be fixed.  My father set out to get a second opinion.  

This led me to the Cleveland Clinic Foundation in Cleveland, OH.  I had a several visits to check everything.  I was advised that I should have it fixed.  I was told, "You might not need it fixed at this time, but a large majority of people come back and have to have them taken out for more severe reasons."  I had surgery on Dec. 14th @ 6:00 AM.  The surgery lasted about 4 hours.  I was left with I believe 3 plates and a few screws.  "But who's counting"  :)  They did have me on Delantin for possible seizures after surgery, but I was informed that it is just a precaution.  They said that when they open up you head it releases pressure or something to that nature?  Anyways, I was back on my feet 3 days later.  I have been great ever since!  I haven't had any headaches, no numbness, and I don't have the stress that I had before.  Which makes a world of difference.

If you would like the name of my doctor here it is and their information.

Head, Section of Cerebrovascular & Endovascular Neurosurgery
Department of Neurological Surgery - Desk S80
The Cleveland Clinic Foundation
9500 Euclid Avenue
Cleveland, Ohio 44195

    
Office Phone  [phone]  
Appointments  216.444.5670
Fax  [phone]


If anyone needs to talk or anything feel free to email me @ ***@****

Hopes, Prayers, and best wishes for you all...

Dru

[090308health]

Thanks turbodsc, we appreciate it. I recently went back to my neurologist who previously diagnosed me w/ the CA, and he said at my last visit he wasn`t sure if it was a CA or not. Now I`m kinda worried about what it might be, and am anxiously awaiting an appointment with a neurosurgeon. Whatever it is, it`s 1 cm in size deep within the frontal left lobe. I`ll keep everyone posted. Take care.

[katiebravo]

A related discussion, ECT and Hemangioma was started.