brain cavernous hemangioma

Hi, this is serious condition. It is good that your friend saw a doctor. This is the most important step. Brain cavernous hemangioma is a condition that belongs to the group of vascular malformation. It could be that the veins in the brain of your friend have been crossed. This can cause a bleeding. The bleeding can than cause a more serious condition. Usually it is epilepsy. The doctor probably suggested a solution for your friend's problem. As far as I know, brain cavernous hemangioma can be treated by a surgery. Of course, more tests are needed so that the doctors could have a clear insight of the situation. I suggest you give support to your friend since this is, as I said, a very serious condition.

Hi, I have suffered from migrained for the past three yrs. after MANY tests, and seeing MANY drs. They finally found a Cavernous Hemangioma in my MRI. This past posting was VERY helpful. Any new info. would be greatly appreciated! :-)

Sandy.

I was diagnosed in 2006 with one of these tumors. Mine actually bled which caused numerous different symptoms such as an inability to speak, severe headache ( left temple ) dizziness, numbness of the entire arm, facial paralysis, and I heard what sounded like a watery, swishing noise in my left ear. I was told not to worry too much, but a week later it bled again, so I had to have surgery to remove it. Surgery involved a craniotomy ( part of the skull is removed ) to gain access to the tumor. I was told about all the possible side effects, such as pemanent, partial paralysis of the face, drooping of part of the face, and other possible disabilities. One day after surgery I was up and about, and three days after surgery I was allowed home. Fortunately, I came out of the operation with absolutely no side effects whatsoever. Its now two years since this thing was removed from my brain and I'm living a perfectly normal healthy life.
Hope this has been helpful.

I was diagnosed in 2005 with a hemangioma in the pons of my brain stem. My systems were ringing in my ears, headache, dizziness, numbness of the right side of face with a pulling sensation, numbness of right arm, double vision as my right eye was paralyzed. I also experience vertigo. I have to this day the ringing in my ears and tingling/cold/burning sensations in my left arm. Occassionally have a pulling sensation in my face. I was told my malformation was inoperable due to the location. My Neurosurgeon said to enjoy my life, keep my stress down, get an MRI every year to check on the status but no other treatment was available. If anyone knows of any treatments please post.

In January I was hospitalized as well with sever pain in my left shoulder, numbness in my left arm and hand after several test and 2 MRI I as was was diagnosed with a malformation 8mm in the pons of my brain stem.  After being refered to several Dr.'s and surgeons I was also told that my condition is inoperable and I have to learn to make some life changes that will involve minimal stress and list of other things that can cause this Maformation to seep blood. I as well will have an MRI once a year to check the size of the Malformation and in hopes that it will not grow and possibly will even go down some.  I was also told to enjoy my life and not take one day for granted.  At first I was in denial of my condition, then angry, then scared, after six months of counseling an learning to make changes in my life and learning where the stress in my life was coming from I am in a lot less pain, on a medication to help with the nerve damage and enjoying life.  I am willing to share my condition with you all and my final diagnosis was from Burrow Neurological Center in Phoenix Arizona. My main Dr. is in Boulder Colorado and I am in good hands now learning that life is a gift and to take it one day at a time and use tools to deal with daily stress!
Debbie

Wow! I have never really looked into my condition. I merely accepted it. Same story, diagnosed with 3 x Cavernous Hemangiomas, all inoperable. I was told this condition was very rare, however here we all are. Quite a profound discovery for a Sunday afternoon.

this heamangioma not to be treated whether it gives the pain. it has no treatment and surgical removal is the only remedy for this problem

I had a 3cm squared cavernous hemangioma cut out of my right temporal lobe on my brain now i have grand mal seizures i am not paraletic or anything else

when i was 22, i started feeling a little off balance at work one day. the next day my equalibrium was so far out of wack, i couldnt jump from the ground onto the trash truck without missing. (i was a trashman at the time....er i mean sanitation engineer! lol!) anyhow.....im not a doctor oh! doctor! kind of guy so i tried to tuff it out......within that week, i lost the ability to see without seeing triple images of things, i lost the ability to walk, talk, or even open my eyelids without my hands, both my hands were numb and constantly throbbed as if though they had fallen to sleep as they say. it wasnt until i was tackled by a friends family and forced into their suburban and up at kingwood minor emergency that i learned something wasmajorly wrong...your thinkin duh! arent you? im stubborn! the doctor on duty gouged my eyeball with a qtip, and i didnt even feel it, he told me, im life flighting you to herman memorial (in houston tx) you have severe head trauma! were you hit in the head by a baseball bat recently? wich duh!, i wasnt..... after hrs of starvation and drinking dyes, and mri's and angiograms, i was told to say my goodbyes to my family. ithey found a cavernous hermangioma onjust above the cerebrum on my brain, or cerebellum,,, dont remember wich term they used, but nonetheless, it had hemmorhaged, and was affecting, both sides of my brain. this resulted in permanent neurpath damage. i wasnt going to live through the night.....obviously, i did live, im not a ghost writer~! i progressed from a wheelchair, to a cain, to a much different walk than i had before all this! fortunately the brain has the ability to rewire neuropaths that are damaged. my hands still go numb, i have slurred speech days, and usually dont drink out of glass, because i constantly drop things, and i either slam car doors, or dont shut them hard enough to latch, because the sensitivity is gone in my hands, i cant feel how hard im holding objects, or shut doors.the kicker.....I AM A LUCKY MAN! i can still work, and live in general a normal life....but
the threat still sits on my brain....waiting to bleed again. it's inoperable because of where it is. surgery is too risky, i'd die on the table. i never got headaches, but when i sleep, i jerk, i have epileptic seizures that are instantaneous, meaning, i'll jerk one real good violent uncontrolable jerk, much like a tick, but they go as quick as they come, and arent so often that i need special care.
i learned that im mortal, and life is precious, and people care about me....i learned what we all know, and take for granted....everyday is a gift to me. maybe this was the best thing that ever happened to me....and yet the worst.

My 18 year old son was just diagnosed with a hemangioma on his left optic nerve. They won't operate because it would take his eyesight in that eye. My son is moving to Colorado, currently we are in Wisconsin. I would love to know the name of the doctor you see in Boulder. Its 3 hours from where my son will live but if its the best doctor he can see, then he'll just have to find a way there. Your help would be greatly appreicated. Thank you for posting. Because this is rare, its nice to hear of others who are living with it. my email is

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. Thank you.

Hi my name is Sheri. I was very suprised to find your post realizing that you are obviously close to us and you know well what we have went through with our son Jaxon. Last April I took Jax to Kingwood.. he was only 18 months old. He was really ill and was not acting "normal" they did a ct on him and told us he had a tumor. He was lifelighted to Hermann as well.That night we met Dr Fletcher and he said it was in the cerebellum and he would remove it the next afternoon. Jax stopped responding and had a shunt placed in ICU 2 hrs after he got there. He required emergency surgery for removal. It took 6 1/2 hrs and when Fletcher came out, he was almost unsure of the mass, but he had removed it and stopped the bleeding. Jax went on to have 2 more surgeries for complications. (Mssa and a csf leak) His shunt from the brain was removed but by the third surgery they put in a lumbar drain. It broke one day..he went into shock and developed meningitis. Jaxon was in the hospital until the end of June. We celebrated his 2nd Birthday in September. Jax is doing well but gets sick often. Unexplained fevers.. lots of ear and respiratory infections..but overall is doing well. I'm afraid he may be having headaches and tingling of the fingers. Its hard to tell bc he doesn't talk much besides baby talk. he just tells me bo bo.
I hope that you are doing well!

I feel for you. Having a sick child is no picnic. We were lucky enough to have been blessed with 17 years of a healthy boy. I can't thank God enough for that alone. It must be so hard because Jax can't talk yet and tell you how he is feeling. Its hard to get the right words from my 18 year old, Wolfy sometimes. We are in the Fox Valley area of Wisconsin. I am assuming you are in WI as well. We go to Milwaukee for care from an oncologist for now. In the fall my son will move to Colorado. The idea is we will bring him home twice a year to go to apt.s in Milwaukee. They don't want to stop seeing him. I'd like a second opinion from the Mayo Clinic in Minnesota but we need to discuss it with Wolfy first, as he is 18 now and ultimately can make his own health decisions. It sounds like you have been through a lot with Jax and all the surgeries. So far Wolfy just gets regular MRI's to watch it. I am tired of watching it and just want it to go away. THere is not much information out there about this 'tumor' so it makes it more difficult than when we thought it was an optical glimoa.

Hi Debbie,

I do not know if your son has had surgery by now or not. However, I have been diagnosed with a Cavernous Hemangioma of the left optic nerve as well. I had surgery for it three times. The first 23 years ago, the second 21 years ago and the third a year and a half ago. By the time I had my third surgery I was nearly blind in my left eye and mine was near the optic chiasm. That was the main reason they wanted to get it...so I could keep my eye sight in my good eye. During this third operation they had to sever my left optic nerve as the hemangioma had wrapped itself around and through my nerve.


If you are looking for a surgeon check out Wilmer Eye in Baltimore, MD. They are the best. As well, if you are looking for a surgeon Dr. Haring Nauta is an excellent choice. He is out of University of Louisville.


Angela

I also wad diagnosis with no treatment available surgery I was 27 at the time I'm 43 now.though my symptom entisfide I'm still living a normal life so do what the doctor says. Just live your life & try not to think about it. it con make it worse mentally if you do.