Something’s on my mind: Part 4

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.

(For the full story, see Part 1, Part 2, Part3)

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.

A Mother’s Determination – Bohring-Opitz Syndrome

Eva

This is the story of my sister Sheri and her daughter Eva:

Our 21-month old baby girl, Eva Bermejo, is a frequent visitor to Children’s Hospital Los Angeles. When we first came to the hospital in June 2011, she was six months old, had severe feeding issues, was failing to thrive, had been experiencing numerous unknown respiratory infections and she was not breathing well. We had previously been in and out of other Southern California hospitals, and we had seen several pediatricians and specialists to try to find treatment and a diagnosis for our daughter. Some pediatricians felt that Eva was just fine and others agreed further testing was needed.

Eva was born one month premature on Dec. 12, 2010. I had good prenatal care and several ultrasounds during my pregnancy, which led me to believe that I was going to have a healthy baby girl. When Eva was born, the first thing I noticed was the large heart shaped birth mark on her forehead, long fingers that were tightly clenched in a fist, beautiful blue eyes and a gorgeous full head of hair. Due to mild husky breathing at birth she was sent to the neonatal intensive care unit (NICU) for observation. That first night I spent in the hospital without my baby, I worried about other things being wrong with Eva, other than just husky breathing. The next day I tried to nurse her in the NICU, but upon attempting we noticed that Eva had a high arched palate and a weak suck. We then resorted to feeding by bottle, but Eva would vomit every time we fed her.

On Eva’s third day of life the doctors discovered that she had an intestinal obstruction, which was caused by an annular pancreas. Eva’s pancreas had grown around her duodenum, which was strangling the intestine and preventing digestion. Eva was then transported to a larger hospital with a bigger NICU and a pediatric surgical staff. While Eva recovered in the NICU, the doctors recommended further genetic testing due to the very rare annular pancreas and other physical anomalies that Eva presented. Those anomalies included clenched hands and mild dysmorphic facial features (flattened nasal bridge, small mouth, small jaw, low set ears, mild bulging eyes, and a high arched palate). Upon discharge we were told Eva could have some rare medical issue and were reassured that it was most likely not going to be significant since her chromosome karyotype test was normal.

Read the full article here: http://www.wetreatkidsbetter.org/2012/10/mothers-determination/

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.