We decided shortly after the trip that we definitely wanted to get surgery for Jesse sooner than later and so we called his office and we were added to the surgery wait list. A few short weeks later and we got the call, October 6th would be our surgery date.
Wow. This just got real.
However, it wasn't all smiles and excitement. In fact, it was very little excitement and a lot more nervousness. Like more nervousness than one would expect. I mostly expected that I would be like 70% nervous and 30% excited for Jesse's future. Instead both Jeremy and I found ourselves uneasy about the prospect of surgery with Dr. Hertle at this point.
So we decided to sleep on it a while and allow ourselves a few weeks to consider.
At this point we had done lots and lots of research, read numerous forums and hundreds of posts from fellow parents on Facebook. So many differing opinions and so many unique children with their own unique story. Some who love one doctor and passionately hate another, some who are indifferent, some children who've had success after one surgery, other's who've needed two, and yet others who've needed 4 and still haven't found the results they are looking for.
A few days after being scheduled for surgery, I called down to Dr. Granet's office in San Diego and requested a visit for early September. As I've said before, we are very fortunate that we have the opportunity and resources to visit so many of the top nystagmus doctors in the country, and in the world.
I also had the opportunity to join a Facebook group for a third doctor, Dr. Lingua. This group is a private group and solely designed as a support group for parents and kids who've had or are having surgery with Dr. Lingua. I am so thankful to the moderator, who has not only allowed me to join their group and follow along, seeing results first hand, but who has become a close friend in this community of parents. She's answered so many of my questions and is so supportive.
So here we were again, three doctors, two very different surgeries. What to do.
For about a month we watched Jesse and largely put the decision of surgery our of our minds. We knew we were going to see Dr. Granet and we hoped it would help us in making this critical decision.
Soon it came time for our trip to San Diego. My amazing friend, Candace, agreed to come watch Max so that Jeremy and I could both be there with Jesse at the doctors office and because it's only about an hour flight away, we made it into a day trip. Out at 4am, home by 9pm. A thousand thank you's to Candace for her help, it was so nice to give Jesse this one-on-one time to be able to make these critical decisions.
We spent about 4 hours at Dr. Granet's office. We knew from others that the appointment may not be on time and would take a while, so we were prepared.
First we met with Dr. Pansara, a fellow of Dr. Granet's. She was super nice and so good with Jesse. She took her time but was also very quick. I really liked that they had a lot of handheld tools to make it easier on the little ones. She did numerous tests like previous doctors, but she also did an eye pressure test with a handheld unit. Pretty cool.
Just as we'd figured, she agreed with previous doctors that jesse's eyes look pretty good. His refractive error is normal for his age and his retina looks good. He did have a light fundus but that was about it.
After some drops and a few more checks, we met with Dr. Granet. Now I will say during this trip we did far less testing than we did with Dr. Hertle. We didn't do a VEP or an Eye Movement Recording, though Dr. Granet did mention that he'd like to get those done before we would do any surgery, maybe next trip.
Dr. Granet came in an immediately put us at ease. His demeanor is so much different than Dr. Hertle's. He looked at Jesse and agreed that he has idopathic nystagmus, meaning there probably isn't an underlying cause. He did say he might have slight, very slight, ocular albanism, or maybe fovia hypoplasia. Either way, his vision is good and his chance of good vision is very high. He won't have 20/20 but most likely he will be able to drive even without surgery. Phew!
He also did something that no doctor has done up to this point, he checked my eyes. He wanted to see if he could tell if I was a carrier. I really liked that. Turns out he doesn't think that I am, but without genetic testing it'd be hard to say for sure. If you recall, Dr. Hertle was thinking that it was carrier and that it was X-linked. So, who knows, but it just goes to show you that there's so much to be learned yet about nystagmus and specifically what causes idopathic nystagmus or congenital nystagmus.
So his refractive error is good, and he can see well, however he does have a head tilt down and in the past few weeks we've also started to see him looking out the hard corners of his eyes. Not turning his head yet, but it could be a sign that a second null point is developing.
To that end, Dr. Granet recommended that we wait for surgery until we know for sure how many null points are established. This would give us the best chance for a successful outcome, as the surgery that he performs needs to be tailored to the movement of the eye, and if that hasn't yet stabilized, then it's possible we'd do one surgery to correct a chin down head tilt, only to have to come back a few months later for a side tilt.
After the exam Dr. Granet stayed with us as long as we had questions. He never made us feel pressured to rush our questions and let us ponder our thoughts after each discussion. He also took the time to explain things to us in engineering terms. He understood that we were both engineers and needed to understand what we would be signing Jesse up for. We also needed facts and data. We couldn't just say "oh, he's the doctor, he knows best" We needed to know and understand.
One other thing happened that really made Dr. Granet stand out to us. He had just finished seeing a teen age patient who'd come out of surgery only a few days before. She was still in the office and so he asked if she would mind meeting us. It was so nice to meet her and be able to see his work and get her thoughts on the surgery and what it was like now 3-4 days later.
Coming out of his office Jeremy and I felt so much better about him as a person than we did with Dr. Hertle. Not that we don't think Dr. Hertle isn't a great doctor, I'm sure he's amazing, but we just never got that warm fuzzy feeling like we did with Dr. Granet. Dr. Granet put us at ease.
I should also mention at this point that Dr. Hertle and Dr. Granet do very similar, if not the same, type of procedure for nystagmus correction. However, what we got from Dr. Hertle was a doctor talking to us in terms of numbers "Surgery #2" is what we would have done. What we got from Dr. Granet was someone who took the time to explain to us what he would do, even draw diagrams for us to understand, and didn't simplify our surgery down to a number. He was careful to point out that the exact number of muscles he would cut/move would depend on Jesse's null point(s) at the time and we wouldn't know until he did some further tests. Basically, surgery is customized to each patient. That made a lot more sense to me.
So we've cancelled our surgery date with Dr. Hertle and we've scheduled a follow up appointment with Dr. Granet for the new year.
We're feeling good about where we stand now and we know that someday soon Jesse won't even remember any of this. But not too soon, I'm not ready for him to grow up yet!