How I Found Out There's A Raspberry In My Brain

by Karen S in Connecticut, December 21, 2013

A pit of dread in my stomach, I walked down the long fluorescent lit hallway to the radiology department in Middlesex Hospital. I went there to get a report of the results from the MRI that I had done the previous morning. Normally I wouldn't give routine test results a second thought, but I knew something was wrong, and my follow-up appointment was scheduled for one month out. I was in pain and I couldn't wait that long. I sat in the drab waiting room, and after a few minutes I was handed a CD in a professionally printed cardboard portfolio, and a single sheet of paper in an envelope. "Thanks," I said. "Take care," responded the technician minding the desk as I turned to walk out.
I'd had severe bouts of dizziness and eye pain and I hadn't felt like myself in months, nearly a year. No amount of healthy eating, over the counter remedies, or extra sleep or hydration helped. I avoid doctors, but I was unable to do a lot of the activities I used to enjoy, and it was getting difficult to focus and to work. I relented and went in to see my primary care physician. I saw the nurse and she put me on allergy medicines and sent me to an Ear, Nose and Throat specialist. But I've had allergies my entire life, and I know what they feel like, and I was not convinced. Detesting the thought of yet another cycle of going from doctor to doctor only to be told different things and handed another useless prescription each time, with no real answers, I almost decided to drop it and just keep trying to figure it out myself. But I was so miserable, and I was told that the ENT had special equipment for various ear testing, so I went forward hoping I was on the right track. My ear tests revealed no problems. When I told the ENT my symptoms, he said that I was describing a migraine. I told him I've never had a migraine before. "Isn't that unusual to start getting migraines at the age of 39?" I asked. "No" he said, nearly rolling his eyes, "that is when migraines start, especially with perimenopause." Now I was the one rolling my eyes. I'm not even 40 and he's chalking this up to menopause? This is not hormones, I told myself, staying silently offended. And everyone I've ever known to have migraines began experiencing them at a very young age. But the ENT followed up with, "I diagnose a lot migraines", which was somehow comforting. He put me on migraine medication and sent me for the MRI. The MRI is just as a precaution, I told myself, millions of people get migraines. I can take medicine for that.
I spent the next week celebrating Thanksgiving with my family while secretly experiencing more and more debilitating pain. Right after the holiday, I had my MRI at Middlesex Hospital. The day after my MRI test, I was back to collect the results. I exited the radiology department, CD and report in hand. Back in the fluorescent hallway, I pulled the single sheet of paper out of the envelope. Words started jumping off the page at me:
Enhancing focus measuring 1 centimeter. Hemosidirin. Cavernoma. Hemorrhage.
I hurried out to my car where I sat and read the report again, my hands shaking. At home, I contacted one of my closest college friends who'd become a radiologist in Texas. "It's a blood vessel malformation," she said, "It's nothing to worry about. Usually cavernomas are just monitored for stability, so your doctor may have you go back for another MRI in six months or so."
"Will it go away?" I asked. "No" she said very sweetly, "It won't go away."
"But what do I do to reverse it? I asked, not accepting it, "I want it out."
"It won't reverse itself" she said patiently.
The next day I read the report over and over again. I picked out a phrase that disturbed me even more than the actual findings. The cavernoma, it said, "appears to be stable compared to prior MRI of the cervical spine." I had MRIs of my neck, spine and shoulder earlier in the year to look for any injury or condition that may explain why I was unable to get chronic excruciating pain under control with medicine, physical therapy, chiropractic or accupuncture. Nothing was ever found, or so I thought. Perplexed, I called up the hospital's radiology department and asked to speak to the doctor whose name was on the report. I left my name and number and was surprised when he called me back in twenty minutes. I asked him why, if the cavernoma was present on the spine MRI from June, it had not been mentioned in the June report and I had never been informed about it. "It was an incidental finding," he said, "off in the corner and not related to the reason why you were having the MRI." Incidental? I screamed inside. Incidental maybe, but not insignificant. I should have been informed about this. I thought of all the aspirin I'd taken between June and December, popping them morning and night, thinking they were helping with my pain. My analytical side kicked into high gear.
A) aspirin is a blood thinner B) I have a blood vessel malformation C) = hemorrhage?, I wondered.
The day after that, I went to see a neurologist, who also told me "It's nothing to worry about." She gave me some mixed opinions about aspirin, and to control my head pain she put me on anti-seizure medication that's also used for migraines. The side affects of the medicine had me in more misery than before. The neurologist gave me a 12-page printout to read that contained information about four related conditions. Mine was only one of the four, and I'll be sarcastic here, I so appreciated reading about much more serious and potentially deadly conditions related to mine two days after my diagnosis.
Because of my symptoms, it was difficult and slow to do online research about my condition. It took about a week before I really understood it well.  After learning all about the rarity of symptomatic cavernomas, and the variability with location, and the cyclical nature of the bleeds and symptoms, I got that it's so misunderstood in the medical community. Hence, so many doctors saying it's "nothing to worry about," even doctors that know me personally and care about me.
People live with cavernomas and lead full and productive lives and I think it is also in that sense that doctors will say "It's nothing to worry about." But the complications, and the severe symptoms, nothing to worry about? 
Being told that a bleeding lesion in your brain is nothing to worry about is like having a door slammed in your face. I need information, not a pat on the head. I'm glad I found the Angioma Alliance, because I would be completely lost if not for them. Knowledge is power.
It's only three  weeks since my diagnosis and it's been an emotional roller coaster, ironic since riding roller coasters is something I can no longer do, in the physical world anyway. Even though my neurologist had prescribed an anti-seizure medicine strictly for my headaches, I read that 25% of people with this condition have seizures, and I connected this statistic with my medicine. Because I work from home, I spend a lot of time alone. For two weeks, I was sick with fear that I might have a seizure when nobody was around. It was only because I had to adjust my medicine, due to the intolerable side affects, that I asked my neurologist about this and she assured me that the location of my lesion precluded seizures. I breathed a huge sigh of relief. Skepticism notwithstanding, I chose to believe my doctor this time and I let go of the fear, and the scary images of FloJo that swirled around in my thoughts.
When I told my family what was going on with me, they were very sympathetic and supportive. 
"Will it go away?" my Uncle Jim asked. "No" I answered, "It won't go away."
"But what do you do to reverse it?" he asked, not understanding, just as I had not understood when I first found out.
"It won't reverse itself" I said. "There is no treatment except for surgical removal. The standard in a case like mine is to just treat the symptoms." Not wanting to worry them even more, I left out some of the details that I'd learned, and my plan to see a neurosurgeon for an opinion on surgery.
So many times over the past decade I had wondered what was wrong with me. Why did aerobic exercise make me more tired rather than energizing me, why did I wake up with a headache when I didn't go to sleep with one, why did I sometimes veer off the sidewalk when walking in a seemingly straight path. I always told myself that I was imagining things, that it was just my allergies or asthma, that I'd feel better the next day, that I'd already gone to the doctor about this and nothing was wrong, that it was all in my head. It turns out I was wrong about most of those things I told myself. I was right about one thing though, it is in my head.
This story is not easy for me to tell, but I am telling it to share the lesson learned. Trust yourself. You know your body better than anyone. Do your own research, don't rely on doctors to give you complete information. If you know something's wrong, don't wait for the next available appointment a month after a test to wait for the doctor to tell you the results. You pay for the testing and you own the test results. Go and get them. If I had waited for my scheduled follow-up appointment to find out my MRI results, I would have continued taking melatonin to help me sleep (said to have blood thinning properties and thus bad for angioma, and likely the reason why I woke up with headaches). If I had waited for my scheduled follow-up appointment to find out my MRI results, I would have continued taking anti-inflammatories (also bad for angioma). I was already continually increasing the amount of aspirin I was taking, which is a blood thinner and is definitely bad, bad, worse (my intuition of A+B=C, I found out, was right). I was unknowingly putting myself in a dangerous situation.
After years of pain and wondering and questions, I have an explanation. I have knowledge and a community and a place to go for support and answers. Of course, I can't fall into the trap of blaming every little ache or twitch on the leaking raspberry in my brain, or using it as an excuse to feel sorry for myself or to get out of doing things I really could handle. I have to learn to manage it and to continue to increase my understanding. Yes, me and my little raspberry have a lot of work to do. It takes a lot of effort and mental faculties to be my own best advocate. I wouldn't want it any other way.