A friend referred me to a new ophthalmologist who lives in another city. I corresponded with this new ophthalmologist via email. I am not replacing my current ophthalmologists, merely seeking additional input on specific issues where experts are few and far between.
However, I guess many facts did not get communicated clearly in my various emails to the doctor. The doctor sent me this email reply today (and I edited what is posted here):
All your efforts measuring pressures are really a waste of energy because glaucoma is about the function of the optic nerve and all pressures are only of significance when seen in this light.
It is the field that means everything and all the pressures in the world will never tell you anything about the field which is the measure of the function of the optic nerve.
You have a serious medical condition which requires a medical doctor and meticulous follow-up with him. You cannot do this yourself . You need to be followed by a glaucoma fellowship trained Ophthalmologist.
This is not a fun research project. This is your sight and your independence.
I'm posting his reply here because, first of all, it is good advice for anyone to know. I hope everyone reading my blog fully understands the doctor's message. This blog is all about intraocular pressure, but I need to clearly state that glaucoma is no longer defined by elevated intraocular pressure. As the ophthalmologist points out, glaucoma is all about the state of the optic nerve. Elevated intraocular pressure is the most important risk factor for the common forms of glaucoma, but it is only a risk factor.
I have two opthalmologists that I see regularly and I also consult with several other health care professionals, including a top ranked specialist in my condition (pigmentary glaucoma) -- as well as a couple doctors of optometry. I think simply mentioning "doctor of optometry" made the new ophthalmologist see red because he started telling me where I could find a real ophthalmologist and mentioned that, "Optometrists are not adequate for you." I had to reread my email to make sure that I had mentioned I was under the care of an ophthalmologist currently. I found that I had mentioned it -- several times -- but a single mention of an optometrist upset the apple cart.
One final comment I'll make is that we are monitoring my IOP because my regular visual field tests and optic nerve topographic analysis showed deterioration over time and my medical advisors felt that a single IOP measurement in the doctor's office every few months was inadequate to address my situation. The comments quoted above are like preaching to the choir. My doctors (and I) understand the role the optic nerve plays in glaucoma, we are monitoring my optic nerve, and we are following the latest research developments in this area. However, I still felt it was important to post the comments because some people do still think that glaucoma just means elevated IOP - which is not true!
Beyond those facts, the communication from this ophthalmologist was really discouraging. He was not able to answer my questions, but that didn't stop him from making a serious attempt to send some negative emotions my way. Emotions do impact our health, and I am happy that I am enjoying the process of learning about glaucoma and intraocular pressure through this research project. The positive emotions I experience in connection with this research project (and this blog) are beneficial to me. I hope I am potentially helping others by sharing this information.
It's probably clear that this particular ophthalmologist didn't become a member of my medical team because, in part he didn't have the expertise I was seeking, but also because he just didn't appreciate the work my current team is doing in monitoring my IOP. This research has been costly for me, but I feel it has been worth every penny. There is no question in my mind that my intraocular pressure is much better controlled today than it was in the past, and elevated IOP remains a very important risk factor for optic nerve damage.
If you are interested, you can find my GDx results, my HRT results and my fundus photos in various posts here on my blog. They aren't pretty (i.e., I have a lot of optic nerve damage), but they are the reality I have to deal with.