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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

I have a cavernous hemangioma in the lower left occipital region of the brain. I'm 44 and the first symptoms of any problems happened when I was about 16. I started to get migraine-like headaches. My dad suffers from migraine, so this was the thought of our family doctor. To be on the safe side he recommended that I see a neurologist.

The neurologist ordered a CAT scan and I can still remember the technician handing us the pics (which look like black Polaroid pics) and said, "You are to go straight to your neurologist's office with these." You can imagine a 16-year old thinking she had a ticking time-bomb in the brain. I was admitted to the hospital to have an angiogram. I have small arteries and they had a hard time poking my groin. The intense burning pain in my brain was unbearable and I swore I would never have this done again. I was told that I had an AVM (arteriovenous malformation) and the neurosurgeon said that it does not appear to be bleeding, but to remove it would be risky since it is in the area of the brain that controls periferal vision. (I do have a slight visual deficit periferally from the center of my left eye to my nose and from the center of my right eye out to the right side.) The recommendation was to have frequent CAT scans to make sure the lesion was not changing in any way. I would have an occasional headache, but treated it like one would treat migraine.

Several years later when I was in my latter years of college, I started to get the headaches more frequent and more severe. My neurologist sent me to his mentor (now deceased) at a renowned NYC teaching hospital and I then became a wonderful lesson for dozens of med students to look at, question, and do silly little neuro-tests with. I was not pleased since it was extremely hard sitting in front of these folks when all I wanted was a dark room with absolute silence. A CAT scan done at the hospital showed no change in the lesion. The "mentor" told us that they couldn't tell when this lesion started (I could have been born with it) nor when it bled. I should continue to monitor it with my neuro. In addition to taking non-aspirin pain medication, my neuro prescribed Dilantin to control the "aura-like" effects of the oncoming headache. (We tried a few other drugs--beta blockers, but I can't recall the names.) As MRIs became the latest technology, I had my brain imaged every year or so to make sure the lesion stayed the same. It did.

This treatment continued until 1996 when my neuro told me about a procedure performed by neuroradiologists that was successful on AVMs called embolization, where an angiogram is performed and a glue-like substance seals off the feeder vessels of the AVM through the catheter. This time I went to an Ivy-league teaching hospital in Phila. Expecting the worst (having said I'd never do another angiogram), it was painless and over before I knew it (the advances of medical science-amazing), however, the angiogram showed that I did not have an was a cavernous hemangioma. The chief of neurosurgery told me that there is less risk with cavernoma and it did not show any sign of recent bleeding. Add to that the precarious place that controls my sight, I should just leave it alone. This was bittersweet in that I had my hopes set on my problem being solved, but instead was no farther along and actually had a different type of lesion. He also suggested that I should wean off of Dilantin. I did as he suggested and 4 months later had my first ever grand mal seizure. My neuro said that the Dilantin was most likely controlling seizure disorder as a result of the cavernoma and had I not been taking it, I could have been having seizures all along.

I haven't had a seizure since that time, I faithfully take my Dilantin and check blood levels, hardly ever get migraines (I hope I don't jinx myself), and see the same neuro, although I expect he will be retiring soon as we come up to our 28th anniversary together. It's just something I have learned to live with, but am still uncomfortable with the thought of a bleed or seizure or both (particularly since I commute 40 miles each way to work).

Ironically, 3 years ago, a student of mine was having headaches and was diagnosed with a bleeding cavernoma, thought to be a result of some radical chemotherapy he had some years before. He had his removed and is doing fine.

Best of luck!

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