Monday morning, we got up bright and early, and were at Dr. Sherr's office at 8:30 a.m. Dr. Sherr is a pediatric neurologist, and has experience treating other children with NCM. We spent a good hour with him, during which time he examined me and answered all of our questions. Here are the highlights from our appointment:
* My development is right on target
* He agrees I am asymptomatic, and that there is a likelihood I will remain that way
* He gave us very specific indicators to watch for, in the event symptoms do appear
* If symptoms do appear, we should be able to control it with medication or through surgery
* My NCM spot should not grow or change
* He does not think I am at higher risk for more NCM spots
* He does not foresee any life-threatening issues caused by my NCM
He gave us recommendations for when to re-image and how to manage with our local neurologist. He also told us we could send our upcoming MRI results over to him and he'll give us his opinion if there are any changes. And, unless symptoms appear, we should not need to go back to San Francisco for medical reasons. Overall, a very good appointment.
A few hours later, we saw Dr. Frieden, a dermatologist, who is both a congenital nevus and NCM expert. Dr. Frieden has a lot of experience with NCM patients, and has conducted NCM studies herself. And, she was even more reassuring about my NCM. She said I have "a bit" of NCM, that it is very mild, and in terms of severity, she considers it a 1 on a scale of 1 - 10. She said I have a 90% OR BETTER chance of NEVER having symptoms. How wonderful that was to hear.
Dr. Frieden also agreed that we are doing all the right things in terms of my nevus. She was glad to hear that we are going to Dr. Bauer for surgery, and had no additional recommendations for us.
On another note, neither of the doctors had any ideas what is going on with my pupils. Both agreed that since I am already going through another MRI, we may as well check everything. So currently, we are trying to coordinate two doctor's orders so that we can schedule my MRI and re-check my brain, as well as my entire spine and a few other places. No one is expecting any surprises, but we are still praying that there are no NCM spots detected other than the little one they found in my first MRI.
Now, before I go any further, mom and dad discovered a big faux pas last night when they were looking at photos taken in early November. They saw this photo of me, taken 2 weeks BEFORE they noticed that my pupils were unequal...
Ok, so this picture is probably too small for you to see it, but if you enlarged it, you would see that my pupils are unequal, even if just slightly. Mom couldn't believe it existed before that awful night where they rushed me to the ER. So they began to search backwards in our family photos and there is a picture of me, unequal pupils and all, at 6-WEEKS-OLD! So they had been that way all along. Unbelievable that nobody noticed before.
So then mom called the opthamologist first thing this morning to admit her mistake, but he still wants to proceed with the MRI. I guess the bottom line is that something is wrong with my eyes, whether it started now or when I was born. So we shall proceed as planned....