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.

Something’s on my mind. UPDATED!



*** UPDATE: The full story is here – Diagnosis!

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.

CT scan showing titanium plate used to repair my craniotomy.
CT scan showing titanium plate used to repair my craniotomy.

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.

UPDATE: Read part 2 here

MRI image 1
MRI w/Contrast showing abnormality on right side of brain.
MRI scan 2
MRI scan 2

Integrating Rsnapshot backups with Synology NAS systems

Rsnapshot is a simple but indispensable Open Source backup script that leverages the power of the rsync command (and SSH) to make backing up your Lunix/Unix infrastructure easy. It’s a must have tool in my opinion.

BTW, The best book for all things Unix/Linux Backup and Recovery (including Rsnapshot) is W. Curtis Preston’s Backup and Recovery from Orielly.

You can use Rsnapshot to write your backups to a second hard drive, an external USB or FireWire drive, an NFS mount from another computer on your network, or simply over the network to another computer via ssh.

I’ve started to incorporate these cheep and very capable NAS devices from Synology, namely the 8 bay DS1812+. I recommend these 3T Seagate drives with the NAS.

Out of the box, the Synology DS1812+ comes with a powerful web-based user interface that makes setting things up easy. It does not support Rsnapshot be default. However, because the Synology NAS is itself it’s own little Linux machine (its OS is based on the BusyBox distribution), it’s possible to SSH into it to make your own customizations. The steps bellow will walk you through installing the “ipkg” package manager (simular to Yum on RedHat based distributions, or apt-get on Debian), as well as installing and configuring Rsnapshot.

Step one: Installing ipkg.

This first step is specific to the DS1812 and assumse you’ve already created at least one volume via the web-based admin interface. If you have a different model, see here for more details.

First thing to do is to enable SSH via the NAS’s web-based admin page. This is in the “Terminal” section of the Control Panel. Once enabled, SSH into your NAS with username “root” along with your admin password.

Next we want to download and install the ipkg bootstrap script. We first change directory to the “@tmp” directory of your first volume, download the ipkg bootstrap with the “wget” command, make the script executable, and then run the script…


cd /volume1/@tmp
wget http://ipkg.nslu2-linux.org/feeds/optware/syno-i686/cross/unstable/syno-i686-bootstrap_1.2-7_i686.xsh

chmod +x syno-i686-bootstrap_1.2-7_i686.xsh
sh syno-i686-bootstrap_1.2-7_i686.xsh

After the script runs, you can delete it if you like. If your Synology NAS is using DSM 4.0 or newer you also have to edit /root/.profile and comment out the PATH and EXPORT statements at the top.

Now restart your NAS via the web-based admin page to finish the ipkg install. Once it’s rebooted, log back in as “root” via SSH.


Step 2: Installing Rsnapshot

Now that you have the ipkg package manager, installing rsnapshot (as well as many other Linux tools) is trivial… Along with Rsnapshot you will want to install “cron” in order to be able to automate/schedule backups. I also installed GNU screen, less, and mlocate to make life easier.


ipkg update

ipkg install rsnapshot
ipkg install cron
ipkg install less
ipkg install mlocate
ipkg install screen

There you go. The rsnapshot config file is located at /opt/etc/rsnapshot.conf

Note also that Cron on the Synology works differently than what you’re used to on most Linux distributions. For details on how to get cron working properly, see this thread on the Synology forums.

Are you in town for E3? Here is were to eat.

  • The Original Pantry Cafe is an old greasy spoon diner close to the convention center. Great for breakfast. It’s owned by one of our previous mayors. (Breakfast, lunch and Dinner)
  • Philippe the Original is the inventor of the French Dip. Coffee is $0.45, very old school menu. A must for all visitors to LA. (Breakfast, lunch and Dinner)
  • Wurstkuche (“Sausage Kitchen” in German, pronounced Verst-Kuke) is Awesome. Grilled sausages of all types (my favorite is the rabbit and rattle snake), and just about every single German beer available.
  • Cole’s – Another old, speakeasy-like bar that that is also famous for it’s french dip sandwiches. It’s near skid row (LA’s demilitarized zone) so you may see a few crack addicts walk by.
  • The Golden Gopher is an old-timey bar thats been spruced up and restored. Great for dinner and cocktails.
  • The Redwood Bar and Grill – great for dinner and drinks. Small and cozy with an interesting ‘pirate’ theme.
  • Casa La Golondrina, located on Olvera St. is housed in the oldest brick building in California. The food is good too. I love their Mole!