From Peace Corp's Mongolia's misdiagnosis to emergency surgery with Dr. Gary Steinberg at Stanford

My symptoms first began in 2009 or 2010 with right-sided arm and hand numbness and tingling. At the time, I was in the Peace Corps (PC) in Mongolia. As the symptoms began to become bilateral I contacted PC Medical and was told I was probably suffering from an overuse injury given that I was studying for the LSAT, writing lesson plans, and teaching classes. Plus my bed was very hard. After a while, I also began to have shooting pain up and down my arms. The symptoms came and went but mostly stayed from 2009 to 2011.

After returning home to the US, I thought I was okay, and for 3 or 4 years I was. I was able to get through law school with only a few issues.

One day as I was studying for a Bar examination the symptoms crept back. One day while at a Seder dinner, the symptoms became unbearable and I had to lie down in the guest room. I was living with my parents at the time and my mom made an appointment with her hand and upper extremity doctor at Stanford. I was diagnosed with Thoracic Outlet Syndrome and was referred to a sports medicine specialist for therapy.

The new doctor disagreed with the initial assessment and made me get a painful EMG test. After passing that test I was sent for an MRI because that doctor had a gut feeling I had a zebra disease. After the MRI came in I was referred to a neurosurgeon at Stanford.

This doctor determined that I needed to see a different neurosurgeon and he referred me to Dr. Gary Steinberg the then-head of neurosurgery at Stanford. Dr. Steinberg's office called me back fairly quickly after the referral. In a week or a bit less I had my first appointment with Dr. Steinberg and his nurse Joli. They told me that I was bleeding into my brain and spinal column due to Cavernous Malformation. Cavernous what? Quickly, I was told that I would need to undergo a laminectomy ASAP. I recall asking if I could take the Bar first and was told... Yes... But you risk paralysis or death. When mom asked what Dr. Steinberg would tell his daughter, he said I would tell her the can’t wait. In less than a week I went to Stanford for surgery. My dad was also getting surgery that day for an unrelated heart issue.

On the day of my surgery which was June 14, 2017, I was told that I had suffered from a seizure. Still, Dr. Steinberg and his team proceeded with the surgery and removed the dangerous bleeds. I got an MRI the next day and despite being at a pain level of 10 and having my one and only panic attack to date, the MRI showed that the bleeds had been removed. I stayed at Stanford for a bit and then had to go to a local rehab place

At the local rehab place where I had to learn how to walk again. I was in a wheelchair and later a walker. I was unable to go to the bathroom myself. I had to have a thickened diet for a week or so because they were concerned about aspiration. After multiple weeks at the rehab place, I was able to go home with a walker and wheelchair. I continued to rehab at Stanford's Neuroscience Center. I got PT and OT. Sometime during this time, I was sent for genetic testing. and was told that I had CCM2. This made sense because my dad was Ashkenazi Jewish. It turned out that my dad, twin sister, two half brothers, and a niece all had CCM 2. An older sister, half-sister, and nephews were spared.

It has been almost 6 years since I first had my surgery. I undergo yearly MRIs. The only issues I have today are tightness and heaviness with a lack of sensation in my right hand, arm, leg, and foot.

I hope I will never need surgery again. I hope for a cure for this rare condition. I recently found the Alliance for the Cure. I have now met others with CCM outside of my family. Because I am one of the luckier ones because I want a cure for myself. and my family because I am a fighter I raising money for a cure. Dear Paralysis and Death you lost. Dr. Steinberg, his team, and I fought and we won. I am walking because I can thanks to Stanford. Please help me if you can.