Hi, my name is Beka.
2 years ago I was diagnosed with a cavernous angioma on the right side of my brain, frontal lobe, basal ganglia and on my optic nerve.
It has been a long journey for me and continues to be. Around eight years ago, I began to have random spasms in my left hand, starting with my small finger jetting out to the left and holding it's awkward position for a few seconds. Three years ago I got to the point where my left hand was unusable. It had become rigid whenever it had a spasm. Each finger contorted in strange ways. I went to a few doctors over the years, but my symptoms were so random in their timing that I had no visual example to give them.
I decided to seek out a hand surgeon for help and that is where my active journey began. The journey where I decided that my quality of life was important enough and I was suffering.
It was difficult, my son was 1 1/2 years old at the time. The 1st hand surgeon I saw noticed that I had neuropathy in my hands and we went on a detour to discover that I have Charcot Marie Tooth Disease (CMT1X), a genetic neuropathy that affects the nerves in my feet and hands. It explained some of my symptoms, but not the spasms on my left hand, which was starting to affect my left foot too.
During that time, I had two hand surgeries, one after the other. My surgeon had informed me that my tendons on my knuckles had been shifted off, locking my hand in between those same knuckles. Some sections needed to be tightened, some loosened and in the case of my thumb, shortened altogether. The spasms had such great tone that 2 months after the 1st surgery all the work that had been done on my hand had to be done again.
My surgeon and his hand therapy staff had suspected that there was something else going on. They thought it was dystonia and some kind of brain issue, not just CMT.
I sought out help from my CMT neurosurgeon and after being sent to the neurology movement department, I got my first MRI. That's when they found my cavernoma.
I had a laser ablation surgery in August. My surgeons were cautious about the deep seated nature of my mass. They thought the laser ablation surgery would be less risky than a craniotomy, so that's what they recommended. They reminded me that there was no way to know for sure if the cavernoma was causing the spasms. By that point I was getting desperate, my right hand had started spasming just like the left. I couldn't imagine a life where both my hands would be unusable. They had no idea why it was happening, doubting that it was related, even though the symptoms were similar.
Recovery for the first two weeks was amazing! No spasms! But they came back. I got lucky though, I had a few months there where my hand was calmer than it had ever been. With that break, I started seeing a pattern. I had begun to notice that my spasms were being triggered by natural shifting light, LED lights and bright reflective surfaces. At my 6 month post op/MRI appointment I showed up with red tinted, glare resistant glasses, telling my neurosurgeon how much better I felt in the dark. The results from the MRI showed that there was only a 4mm decrease in the size of my cavernoma, which was 18mm to begin with, not what my surgeon was hoping for.
Those first two weeks, post surgery, I got plenty of rest in a dark room, now I wonder if it was the lack of light and not decrease in my cavernoma's size which had improved things.
Now, fast forward to today. I am so sensitive to light that it's hard to grocery shop without having at least a dozen spasms. I have increased spasms in our bathrooms with all of the reflective surfaces and same goes for the kitchen. My husband got major points when he switched out all our LED lights for incandescent and I now wear those red tinted glasses with polarized sunglasses on top and sunhat as well.
I had my third hand surgery last month and the spasms have not helped in the healing process. Though, now that I know the trigger, I have the ability to calm them down. It's a glass half full feeling for me.
I scheduled a functional eye exam at a facility I've chosen to help understand what is going on. My neurosurgeon has referred me to a Neurology Ophthalmologist in the same hospital and my eye doctor has referred me to the best eye doctor in Washington state. I need answers and I'm thinking it might not be bad to get a second opinion as to what to do next, neurosurgery-wise and eye-wise.
It all seems like a guessing game. My world is feeling smaller and smaller as I go. My husband is concerned and my 5 year old son is resilient, but still grasps everything that's going on. I'm an artist, who can't work without spasms. it's all too much.
Do any of you have any advice? Have you seen or heard of anyone like me? Any recommendations for Neurologists? I'm seeing a team at UW Medical Center.