Back in the (bike) saddle again

It's been about 4 months since my last surgery and 3 months since I've come home. I can't believe the progress I've made in the last 3 months. I've been going to the gym as often as possible to build strength and conditioning that I lost during my time at Stanford. I've recently started mountain biking again and even went camping last weekend. Here's us last weekend on our camping/mountain biking trip to Santos.

The trip was awesome. Even though the weather was a little warm and rainy in the afternoons, it was so much fun. The trails at Santos are great. We did a few "epic" rides (to me they were after months out of the saddle).




I can't say the nerve pain is completely gone, but enough where I can do most of the things I was doing before. I'm not too worried about it right now. I'm just happy I can run, bike, and lift weights again. I find it tough trying to drink the 3 liters of water a day, as directed by Dr. Steinberg. I find that I get headaches if I start to get a little dehydrated. I have a small scab left on one side of my head which will hopefully fall off soon.

I am still apprehensive about a lot of things though. I worry about

• Scrubbing my head too hard near the incision areas.
  
• Wearing my bike helmet too tightly.
  
• Putting any pressure on the two sites where my head was drilled open.
  
• The hole (aka fistula) in my head where I was leaking cerebral spinal fluid and how well it healed over...and whether I should ever blow my nose again.
  
• The nerve pain may never fully go away.
  
• Not being able to get full range of motion with my jaw due to the surgeries.
  
• What will happen with my two heart related conditions.

I don't let any of this consume me though. Until the doctor's put any restrictions...I plan to continue to be as active as I can right now.

News and media clips about moyamoya - Part 6

I came across another news article on a woman in South Bend, IN who has been diagnosed with the disease.

South Bend, IN news site - Woman in Indiana recently diagnosed with Moyamoya

Good news is that we got back from a mountain biking/camping trip this weekend. We went mountain biking at Santos in Ocala, FL for the last three days. Each day got progressively better (mentally) as we went from only about 3 miles on day 1 to 10-12 miles on the last day.

I got a letter from Stanford this weekend reminding me to schedule my follow up appointment in August. I have a week's worth of tests, but thankfully no CT scan will be required this time.

I may be defective...

I found an article on a recent study led by scientists at the University of Texas. Scientists at the university have discovered a single gene defect that causes thoracic aortic aneurysms and dissections as well as early onset coronary artery disease, ischemic stroke and Moyamoya disease.

Summary of article published in American Journal of Human Genetics: Mutations in Smooth Muscle Alpha-Actin (ACTA2) Cause Early Onset Coronary Artery Disease, Stroke and Moyamoya Disease, Along with Thoracic Aortic Aneurysms and Dissections

I was going to contact the principal investigator to see if I could be a part of the study. I have two of the conditions described and it would be nice to know if this is the answer to my problems.