I've managed to catch up somewhat on the lost time this week. Tuesday Mom and I went to Detroit for an exam with the retina specialist, and then we stayed overnight. Wednesday afternoon I came home to a slew of new books that had arrived in the mail. I did a bit of cleaning on Wednesday and Thursday and thought I had an appointment with one of my pastors yesterday to discuss some things. The appointment was cancelled yesterday morning. I wasn't very happy about it, but regardless of my feelings the cancellation was probably a good thing.
The report on my eye is a bit technical. I keep thinking that I want to simplify this update for readers here, but I'm very used to putting things in medical language. It's actually empowering for me to understand what's happening with my eyes and why things are happening the way they are. This is mostly text from an email I sent around, but it's edited a bit. I had written to an email list about the potential effect of Topamax on my nystagmus (jerky eye movements) and the effect of this on my visual functioning, so a lot of this comes from the follow-up to that email.
I have had chronic angle closure glaucoma that is painless and difficult to control since 1991, and I learned the hard way to check my pressure by palpation (touching my finger gently to my eye) and to know intuitively when the pressure is up.
I went to the cornea specialist in Indianapolis on Monday to have my pressure checked, and according to him it was 19. He didn't feel this was cause for concern, but I still felt that something wasn't right. He talked a lot about my retinal detachment and blamed my problem on this. I had a retinal detachment repaired in 1998. Part of the detachment could not be repaired, and this is visible as a partial detachment which has remained unchanged since then but which doctors commonly assume is responsible for any change in my visual functioning.
For all the talk about glaucoma not causing vision loss until it's too late and the loss not being reversible, my experience is that it causes me to experience complete vision loss and that the loss is reversible. There is an article in the American Journal of Ophthalmology that briefly references the possibility of lowered pressure leading to reversal of disc cupping (a characteristic of damaged optic nerves indicative of glaucoma) and visual field enlargement. Because of the type of retinal detachment and scarring I have, my field is limited to a small area in the lower nasal quadrant; so it is likely that when the pressure rises I lose it--at least this is my best guess supported by a bit of evidence.
On Tuesday, I saw the retinal specialist who did my surgery in 1998. My exam was hindered slightly by my nystagmus (jumpy eyes) and will be followed up with an exam under anesthesia. He did get a red reflex (which indicates that the retina is functioning properly) and was able to view the retina and believes that the detachment is unchanged from the state it was in after he repaired the portion that was treatable seven years ago. His pressure readings were very high compared to those of the doctor in Indianapolis; but they used two different instruments. The retina specialist felt that it would be reasonable to try lowering the pressure based on the fact that I experienced discomfort when he touched both eyes. I brought up the article, and he was interested in my thoughts. The theme of the article is actually the effect of glaucoma on the function of retinal cells in infants with ROP (my primary eye condition), so the main point of the article would not apply to me as an adult but the comment about the reversal of disc cupping and enlargement of visual field would.
The doctors agreed to put me on Xalatan, which I started Tuesday night. My eyes are already softer, and I have experience significant improvement in visual functioning. I was able to follow a person from a distance of about five feet on Wednesday morning and am regaining some object perception. Managing nystagmus is still a concern, but this makes a pretty strong case in my mind for remaining on glaucoma medication. If my pressure can be managed successfully, I can stay on the Topamax.
One of the questions that has been bothering me is why I have lost so much clarity in my vision even though on good days I don't seem to have lost the detail. I don't really know how to explain it. Why can I see objects that I could not ever see as a child, but I cannot see things in the same contrast or clarity? Has something happened to my nerve cells? Has something happened to my brain? Obviously my retina is attached: the picture is still getting to my brain. It just looks very different now. Why?
I remembered having discussions with a person from one of the ROP email groups. She began taking a vitamin called biotin which is useful for neuroprotection. She regained several lines of visual acuity on the eye chart. I tried taking biotin for several months and eventually added other supplements as well. In the end, I did a lot of research when deciding what to take. Some sites suggested a lot of supplements but there were no studies to back up the suggestions. I don't buy special formulas that claim to do this or that for the eyes. I buy the individual vitamins. There are a lot of reasons why I do it this way, one big one being that I can evaluate the impact of a new supplement better if I add each one without adding another at the same time.
My vision was very stable while I was on the supplements, and I'm wondering if they would be beneficial again. What I did not know is how they do or don't interact with Topamax--and of course most sites just say talk to your doctor. Of course, I can do that anyway. I want to write up something to take in to him and let him see exactly what I'm taking and why, but that's going to take time. I spent most of the afternoon looking for information on meds and vitamins, and what I've found is that meds can decrease the amound of biotin in the body and actually lead to a metabolic disorder. One of the problems associated with biotin deficiency is sensorineural hearing loss. Another is recurrent infections. My recurrent infections stopped when I started supplementing with biotin, among other things.
I found a very good article discussing how various supplements interact with antiepileptics, and I feel a lot better now. I had stopped taking my vitamins when I started the Topamax because I felt that it was best to evaluate the Topamax alone. But I think it's time to have my vitamins again, and something inside tells me that my eyes need them.
I was pretty disappointed about my meeting being cancelled yesterday, but it was probably a good thing in the long run. My bathroom sink was extremely clogged up, and the plumber came out. It's fixed now, and I'm very glad.
I've spent yesterday and today scanning some books, and I'm hoping for a bit of rest this week before the trip back to Detroit. Dad and I will go back on Thursday night, and I'll have the exam under anesthesia on Friday sometime.