It’s important to determine what kind of glaucoma you have. There are dozens of types of glaucoma, but most people fall into one of two main categories. There is also something called traumatic glaucoma that’s caused by blunt injuries to the eyes, which, as a fighter, you’ve probably had a few times. You mentioned having a pressure of 50 in one of your posts. This is indeed a very high pressure that requires emergency treatment. An eye can go blind within hours at a pressure that high.
This test is called fluorescein angiography. They inject a dye (yellow color) into your vein and take pictures in your eye using a special filter. That way, they can follow the dye as it makes its way through the blood that flows through your eyes. This is typically not done for glaucoma, but for retina problems. This test led to a diagnosis birdshot chrorioretinopathy. As I explained in my initial post, this is an autoimmune disorder that must be treated aggressively.
You also show another letter that says you have a "peripheral retinal dystrophy". This is a non-specific diagnosis. Retinal dystrophies are inherited (genetic) conditions. They have nothing to do with birdshot, and you almost certainly do not have both. The best way to tell would be with the retinal photos and the angiography photos. Also, did you ever get the HLA-B29 test? This would be important to confirm the birdshot diagnosis.
As I said earlier, I’m skeptical about the what the people who diagnosed “retinal dystrophy” are doing. The treatments are highly unconventional and, to my knowledge, do not happen in the West. I have also never heard of “laser stimulation”. I will ask some world-class retinal surgeon friends about it.
The “birth” glaucoma is probably wrong. It’s just very rare to see someone so young with glaucoma that doctors who don’t have specialized training will sometimes just call it “congenital” (meaning you have it at birth). Children with congenital glaucoma will usually go blind by early childhood if left untreated. Ray Charles probably had congenital glaucoma. At this point, the focus should primarily be on your better eye. Yes, you still need to control the pressure in the right eye, but that won't give you your sight back.
What the Russian doctors told you sounds like “angle closure” glaucoma. This happens when the “canal” that lets fluid flow out of your eye gets “blocked” by your iris (the colored part of the eye). Doctors will essentially punch a hole through your iris using a laser to make the iris get un-stuck and release the pressure. This won’t work well in chronic cases because scar tissue will have formed in the canal that releases the pressure. This is probably why you needed to get surgery to create a direct passage from the inside of your eye to the outside. I’m not a surgeon, so I won’t speculate about the post-surgery injections.
My concern about the angle-closure glaucoma diagnosis is that this form of glaucoma is very rare in young people, especially myopic (nearsighted) people like you. There are many other conditions that can damage or block the canal (it’s called Schlemm’s canal) in your eye. These include trauma, chronic inflammation from various sources, and corticosteroids. Sometimes it's hard to tell them apart after you've had it for a long time.
Your glaucoma doctor seems like a good person. It is very important to get a definitive retinal diagnosis. It may or may not be related to your glaucoma. However, when you find two different rare eye diseases in the same person, they are often not coincidental. Retinal dystrophies are not related to glaucoma. Birdshot chorioretinopathy is also not directly related to glaucoma. However, the treatments for birdshot can cause glaucoma. There are also other inflammatory conditions that can look like birdshot and can cause glaucoma. You need to make to make sure your retinal condition is also taken care of. Unfortunately, there are no currently approved treatments for retinal dystrophies, although clinical trials are under way. But again, I don't know if that's what you actually have.
I am not a cardiologist or a neurologist, but this makes a lot of sense to me. ASD (atrial septal defects) can cause strokes. Bubble contrast echocardiography is used to diagnose ASD. I’m relieved that it wasn’t due to rheumatic fever. You’re lucky they found ASD before you had a massive stroke. This is actually great news.
I think it would be good for you to organize your medical records from different clinics. You should also request images from your eye tests. They probably have them stored on disk. They can provide you with CDs or DVDs that contain the images, or even transfer them to you electronically. As I said and will repeat: you’ve had various diagnoses that are inconsistent. The management of these different diagnoses are also different.
I looked up Šárka Pitrová. Her hospital’s web site claims that she’s "among the world’s leading ophthalmologists". They claim the same thing about their other ophthalmologists. I don’t know her, but she has a lot of experience. She’s written about 40 papers in scientific journals, but they are mostly in Czech journals. Non-English journals are generally considered to be of poor quality. That said, many of the best clinicians do not publish many papers because they’re busy doing medicine.
I will not second-guess an experienced doctor who knows a lot more about glaucoma than I do. I am curious, however, about why she chose not to operate on you. She probably had a good reason. That said, Dr. Pitrová is a glaucoma specialist. You need to be under the care of a team of doctors that include a glaucoma specialist, a retina specialist and/or a uveitis specialist. And these people need to communicate with one-another.
Yes, please do. You can put them in google docs or a dropbox and I will give you my email. I don’t have much spare time, being a full-time professor, but I like to help people in need if I possibly can.
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