I was put on Decadron, a steroid, after my first biopsy back in February to reduce inflammation. It now appears that this steroid has caused most of the abnormal signals on my MRIs to clear up, leaving just one tiny spot. We still don’t know however what that spot is. I’m told It could be vasculitis or it could be brain lymphoma.
Because the steroid can “melt away” or reduce lymphoma (not cure it), I’ve been taken off of that drug. The plan now is to see what happens with the remaining spot on my MRI while not taking the drug. I go in for another MRI in three months to find out.
I experienced some serious withdrawal symptoms after going off of Decadron, namely extreme fatigue and joint pain, mostly in my knees but also in my hands, wrists, hips and shoulders. This seems to be common based on what I’ve read on the net.
I did have two more seizures on June 21. One while at home, and a second about an hour later while in the ER. As a result, my neurologist doubled the anticonvulsant medication I’ve been taking. My tongue is still recovering from having bit it again.
I still continue to feel healthy, and don’t have any new symptoms, but having had the two recent seizures does make me feel a little like a walking time-bomb – I hope the Keppra does it’s job.
This is a followup post to Part 1. As I mentioned before, after an inconclusive brain biopsy in February, which did not detect any tumor cells, it was recommended that I go in for a second surgery to get a larger tissue sample and hopefully get a solid diagnosis so that treatment could begin. It’s been a little over three weeks now since that second surgery on April 8th and again, no tumor cells were seen. All that was detected again was inflammation (gliosis).
The current running theory is that I may simply have some sort of possibly transitory inflammation that caused my seizure back in July of last year. I still have no other symptoms and haven’t experienced another seizure. My neurosurgeon also mentioned that the lesions seen in previous MRI scans seem to be responding to the steroids I’m now on. The current plan is basically to monitor my situation now with an MRI scan every three months.
It’s been a scary couple of months but it looks like there’s some light at the end of the tunnel. We still don’t know what is causing the scar tissue. Lymphoma is a possibility. I continue to feel healthy, positive and grateful to my family and friends for all of their support, especially my wife Emily who has remained strong throughout all of this. I have to say that I am very grateful to my doctors too, especially my neurosurgeon, Dr. Gantwerker of the The Craniospinal Center of Los Angeles.
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.