I started experiencing severe vision problems a few weeks back- too bizarre to detail here- but the worst of it was that I ended up being almost completely blind in my left peripheral. At the suggestion of my neurosurgeon, Emily drove me to UCLA’s emergency room where I ended up being admitted for a very long and exhausting week. I now have a team of doctors working my on case and while they feel the most likely cause of my problem is Astrocytoma, they can’t be certain because both of my previous biopsies were inconclusive. So, incredibly, it looks like I will be having a third brain biopsy soon. This time however, the doctors want to make sure that they consider all possible diseases before cutting me open again. On one one hand, I appreciate this conservative approach to finding a diagnosis, yet I was told I probably had brain cancer over a year ago and no treatment has been started. It’s extremely difficult to express what an emotional toll this has been, especially with my wife being pregnant with our first child. She’s full term now and is expected to give birth around December 13.
While at UCLA, I had many more tests — a third lumbar puncture (spinal tap),,a CT/PET scan. two more MRIs, one using a new state of the art high resolution machine, as well as both a retina and cerebral angiogram. Here’s a cool youtube video of how a cerebral angiogram is performed . The cerebral angiogram, which was done this past Monday was clear, and I think that means vasculitis has been ruled out. Next, I have appointments with a second neurologist and an infectious disease specialist.
I’ve decided to get a little personal here and write about some health issues I’ve been having lately. I know my friends and family are interested to know more about my situation… And some of my experience may be useful to others out there on the net.
On July 12, 2012 I experienced a grand mal (also known as a tonic-clonic) seizure while I was at home, in front of the computer reading email. I’m grateful I wasn’t still on the highway, driving home from work when this happened. Right before losing consciousness, I remember having a strange problem with my vision, and being unable to read text on the computer screen. I seem to remember hearing what sounded like repeating static as well. The next thing I recall was being found by my wife Emily in an extremely disoriented state and bleeding from somewhere in my mouth. I had apparently fallen during the seizure and bit my tongue.
Emily dialed 911 and I was soon in the ER. Initial MRI and MRA scans didn’t show much except for something very small in my visual cortex. It was thought that this “abnormal signal” could simply be something residual from the seizure itself and not necessarily the cause of it. A follow up MRI conducted in September of 2012 showed that the abnormal signal from the first MRI had not cleared up. A spinal tap was then performed to check for possible causes of inflammation/infection and MS but ultimately came back clear. A third set of MRI scans done in January of this year looked worse, now showing multiple “ring enhancing” lesions. My neurologist and neurosurgeon both felt the next thing to do was a biopsy.
After another set of pre-op MRI scans (see the two images at the bottom), a craniotomy and stereotactic biopsy was performed on Feb 25th, a few days after my 38th birthday. The sample was sent to both the local lab at the hospital as well as UCLA for pathology tests. Initially we were told that the pathology reports suggested I had a grade two astrocytoma, however it now appears that the biopsy was inconclusive and only showed “inflammation” or Gliosis.
So, essentially, we’re sort of back to square one now, not really knowing what’s going on in my head. Whats bizarre about all of this to me too is that I feel perfectly healthy. After the first seizure I decided to get my weight and blood pressure under control. I’ve lost over 30 lbs, exercise regularly and take medication for my hypertension. I also haven’t experienced any further seizures (I take 250mg of Keppra twice daily).
Next up for me in the very near future, is a second, slightly more invasive biopsy in the hope of getting a a solid diagnosis so treatment can begin. My neurosurgeon described what he planned on doing by saying he was going to take a “crouton” sized piece of tissue… As scary as brain surgery is, this second biopsy can’t happen soon enough for me – not knowing what’s going on in my head is far scarier, and it’s something that’s hard for me to not dwell on.