Something’s on my mind: Part 3

(For the full story, see Part 1 and Part 2.)

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.

Something’s on my mind: Part 2

Post craniotomy scar / incision.

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.