Kevin and I learned a lot from meeting with him today, and we even got to meet with his partner, Dr Pribila, who is a Pediatric & Adult Strabismus, aka “eye muscle doctor”. We really liked both Dr’s. They were genuine (had the time for me), experienced and knowledgeable with this disease.
Here are the notes to sum it all up…
--- My graves eye disease is very typical of a normal Grave’s eye disease patient. Right now it’s on the medium side on the scale of how bad Grave’s eye disease gets. However, Dr Rakes did suggest that I may be progressing faster because I am pregnant.
--- There is no way to tell if pregnancy is definitely a cause or not, there are no statistics, but both Dr's seemed to think it could be triggering my Grave’s antibodies to attack the muscles, because my immune system is out of wack and this is an auto-immune disease, but pregnant or not, both Dr’s thought this was bound to happen either way eventually.
--- Dr Rakes noticed my eye is pretty dry because it is not closing at night when I sleep. He gave me another kind of lubricant drops "Blink Tears" and wants me to put "Lacrilube" on every night. Maybe even tape my eye shut to protect the lens (yippee).
--- Both Dr's explained that Grave’s eye disease has to run its course. Typically symptoms gradually get worse over the course of a few to 6 months (from when the first signs of eye disease show up). Then they will eventually hit a plateau and start to reside. The part of when and how far back they reside is completely unknown and not predictable.
--- From their experiences, most patients land somewhere between 50% and possibly almost back to normal, and hit another plateau and level off there - where symptoms neither get better or worse. The eye will most likely stay like that forever. This would be the time to decide if I want to try surgery.
--- Some good news: My optic nerve is not inflamed, it still looks healthy, therefore I won’t go blind. In this case oral steroids are not necessary.
--- Both Dr’s recommended surgery, but not until my symptoms have stabilized (probably 3-6 months after delivering baby). The reason we have to wait until the antibodies and eye symptoms stabilize is so that we aren’t correcting something that could still potentially get worse.
--- Surgery entails 3 steps: (if required)
1. Fix the bulging eye by shaving back the bone behind the eye so that the eyeball can sit back into the socket correctly – this will typically fix some of the eye mis-alignment.
2. Fix the remaining eye mis-alignment by sculpting the muscles behind the eye to get the alignment with the other eye back to normal.
3. Fix the eyelid retraction, if any left over.
--- Dr Pribila looked at me (in my good eye-of course) and said, "I am so sorry to tell you that unfortunately this is a long road. Most likely one year from when it started. But we are going to do everything we can to get you back to normal as quickly as we can. The good news: your eye will look completely normal when complete.”
--- When I asked if I will have to deal with this all over again next pregnancy, he stated, “typically Grave's eye disease runs its course once and once it’s done, it’s done." Let’s hope this is true!!
--- Some stats he said… 75% of his patients have it in both eyes, but typically one eye is always worse than the other. And 50% of his patients have surgery.
Of course, I am no looking forward to any of this! Let's pray that after pregnancy, the antibodies completely subside and my eye just goes back to normal, where no surgery is required. We might be praying for a miracle. But one can wish, right?
My next follow-up appointment is in 6 weeks. I can meet with either one of them and they will communicate to decide the necessary action. At that point it might just be more measurements to see how I am progressing and then they'll see me again after baby comes.
In the end of it all, I feel better knowing these Dr's are on top of it and feel I am now in good hands now, although reality is...it's going to be a long 8-10 more months.
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