Yesterday, I got a call back from Dr. Hertle's office regarding the inquiry I sent them for more information.
I talked to the friendliest, patient, most informative woman. Knowing that she probably had very little time to actually hear what I needed to say, I blurted out Makayla's entire medical history and at least thirty questions in rapid fire fashion. She very patiently listed to me as I sputtered our story. Never interrupting or rushing me, only stopping me to ask extremely relevant questions. What was truly shocking was how she spoke to me like a concerned mom, rather than a busy office assistant who has heard similar stories a thousand times and really needed to get to other clients.
By the time I was off the phone with her, Dr Hertle's assistant had emailed me six informative documents including information regarding the surgery, what to ask our insurance, and an outline of what the visits with Dr. Hertle would entail, and a link to the American Nystagmus Network for support and additional information. She also sent me some paperwork to fill out for Makayla so they can get her in their system and schedule her first appointment with Dr. Hertle.
After speaking with our insurance company yesterday, who confirmed that Dr. Hertle is a covered doctor (wooohooooooooo), they said that since Dr. Hertle's care is so specific and specialized they may even be able to reimburse us for some or all of the travel expenses! My fingers are crossed, but that sounds too good to be true! They are currently looking into it for me and will be calling me back to confirm.
I quickly filled out all the paperwork and sent it back to his office along with a short summary of Makayla's medical history, and already this morning I got confirmation that they received the paperwork and it's been sent to their scheduling department who are supposed to contact me on Wednesday. We are hoping that we'll get an appointment as early as May.
This appointment will be a chance to meet with the doctor, and have some unique testing done, like an Eye Movement Recording and an Electroretinography (ERG), just to name a few. Based on the results of the exam and tests, the doctor will recommend the best treatment.
I am still really scared of putting Makayla through a surgery, and hope that the doctor tells us that she sees good enough that she won't need a surgery, or that her Nystagmus may improve over time. However, I have read that if surgery is the best treatment, then the best age for the surgery is between 12 and 24 months.
I am so excited to have so much new information at our finger tips. I feel a huge sense of relief to know that my little girl is going to be seen by a someone who knows as much as possible about her condition. But I am sooo nervous about all that it entails too.