The following posts from the ROP list present some thoughts and information about glaucoma in people with ROP. The ROP list was moderated by Dr. Scott Richards until August, 2002. The list has closed now. For more information about lists of interest to people with visual impairments, please visit the email list index.
Date: July 14, 1998 From: Sarah J. Blake
I'll start with the background, and hope that you'll forgive my rambling. My ROP was not discovered until I was 5 months old (2 months corrected). I had been home just over two months, and Mom says that she had taken me to the ophthalmologist because my left eye became red and puffy. The ophthalmologist diagnosed the glaucoma and sent me to Tulane University for further examination. There was where my ROP was diagnosed. I was sent home, and my parents were told that I was blind. Mom's note in my baby book says that some hope was offered for my right eye, but none was offered for the left.
I asked her this evening if I was ever given drops for the glaucoma as an infant. She doesn't remember that I was, and in fact, I do not remember getting them at all until I was 8 years old. I had an acute glaucoma episode which lasted over 3 hours. I complained of pain in my left eye, and Mom called my ophthalmologist. He told her to give me adult aspirin and get me in the next morning, a Saturday. That was when my cataract in the right eye was also discovered. We were sitting in the waiting room, and Mom saw it as I was looking at her and we were talking. I had surgery for the right eye and drops for the left. Mom was faithful with my drops for a while, but I guess her own tendency to forget set in, and combined with my dislike of the drops, lack of understanding of how important this could be, and my failure to complain about pain, eventually the drops were stopped altogether. My pressure was not monitored, and I think that eventually I was not even keeping up with regular exams. I was so difficult to examine, fighting the bright lights so much that it took three or four people to examine me, and even then it was not very successful! Also, we were led to believe that ROP is a stable condition unless complications occur. I did not participate in contact sports due to the risk of retinal detachment. We were not told how important it was to have my pressure monitored, even though the possibility that I could develop the same glaucoma in my right eye that I had in the left was noted in the operative report for my cataract surgery.
To make a long story short, by the time I was 20 I had been experiencing very gradual vision loss for a very long time. My pressure had stabilized at 43. At the time it was finally recognized that I had glaucoma in my right eye, I had no more vision and was quite unhappy.
Drops are always the first treatment where glaucoma is concerned. There are pills available as well, and in fact, the medications used for migraine also help with glaucoma. This is probably why I experienced relief when I was treated with a beta blocker for ocular migraine. Drops have the fewest side effects. The listing you see on the bottle is a listing of all reported side effects. It's important to discuss the incidence of these with the prescribing doctor as well as the risk of further damage to the eyes if the medication is not taken. Glaucoma is not a nice disease. There are two ways in which it can work: it can be painful and sudden, or it can be slow, persistent, and painless. In either case, it is extremely damaging to the optic nerve, and if you are hoping to preserve an already minimal amount of vision, it's important to preserve the optic nerve because it doesn't take much for that vision to be gone.
The medications are, as I said, the safest approach because they are noninvasive. Other treatment options include laser treatment and invasive surgeries. In my case, the drops were not successful. The pressure had probably been elevated for too long without anyone knowing. I had one of the surgeries--there are two different procedures. It did result in improved vision for me, but no one could be sure that it would. Doctors like to avoid things that cause trauma to the visually impaired child's eye because the trauma can cause problems of its own. I was given drops after the surgery to keep the pressure down. I used them like it was the law at first. My pressure stayed well within normal limits.
Then, as is common with most people taking medication, I thought that since I felt good I could slack up on the drops. Eventually I stopped them altogether. I was seeing an optometrist at the time about my contact lens. I didn't like the ophthalmologist in the town where I was living, so I just didn't go. My optometrist kept trying to alert me to my rising pressure--13, then 15, then 21, and finally 23. I didn't pick up on the pattern. I thought it was just the way that my eyes were--my pressure tended to be on the high side. By the time I saw an ophthalmologist (because my vision was gone again), it was up to 30. He had me restart the Betagan, and it didn't work. It took the addition of another drop to bring it down. In addition, I have what may be permanent damage to the cornea because the elevated pressure is another trauma to my eye. So I get another surgery which, in my understanding of things, may have been avoidable if I had taken my drops like I was supposed to in the first place. My cornea was completely clear after the 1992 surgery and stayed fairly clear as long as the pressure was down.
In my left eye--the eye which was originally affected by the glaucoma and which has remained untreated for the greater part of my life--the cornea is completely clouded over. It is impossible to see any part of the inside of my eye. The pressure stays around 19 now, but I am apparently prone in this eye to the acute attacks. This is something I plan to discuss very seriously with my new doctors whenever I get there. My left eye has been basically written off as unusable and ignored for my whole life. However, my optometrist was able to document light perception on three different occasions, and the eye does compensate to a very minimal degree when the vision in my right eye is gone. The compensation is not very usable, but it is there, and after observing the differences in what I can do with my right eye when the cornea is clearer, I wonder what my left eye would be capable of with an unclouded cornea.
I have no doubt that the damage to my cornea in my left eye may have been caused by the untreated glaucoma. I don't know that for sure and may never know, but it's a fact that I cannot help emphasizing. To have a doctor who is willing to take the risk of prescribing a medication that is untested on children may at first seem like something to be really concerned about. At the risk of minimizing that concern, I want to say that it may also be a blessing and reflect his dedication to preserving any vision your child may have. Doctors are generally extremely cautious in using medications with children, and my guess is that it wouldn't have been prescribed if the risk of damage from the glaucoma didn't outweigh the risk of side effects. I wish that glaucoma had been explained better to my parents so that they would have known to keep up the treatments despite my fighting and so that when I was old enough to understand they could have explained it to me. I think it would have saved me a lot of emotional pain that I am going through now to know that people had cared enough to do what it took within reason to preserve my vision. I know a lot of people whose parents went from specialist to specialist seeking a miracle. That's not what I'm advocating. I'm advocating reasonable measures--education about and strict compliance with the treatment regime.
I'll get off the soapbox now. I know this may seem extremely firm, and it is. I completely sympathize with fears about the side effects--I have them myself and believe that it is vital to be aware of possible reactions and make decisions accordingly. But having the medical knowledge that I have forced myself to gain over the last three years, I also know that many of the more serious side effects listed are not common but that the company is legally obligated to report them.
Date: July 15, 1998
From: Susan
Sarah,
Thank you so much for sharing that information with us. I found it really helpful. My son's right cornea is clouded over, he is 10 months old. He gets Trusopt and Betoptic at present in an effort to keep the pressure down, the cornea did appear to clear up a bit for a while, but it is again as cloudy as ever. The doctor can't see into his eye at all but he does respond to light. What type of surgery did you have to clear the cornea? I appreciated the information as I am constantly battling my mother over the fact that he has received these eye drops for so long, she is a nurse and reads up on all the side effects. You helped re-affirm that I am doing the right thing for my child. He can't tell me when the pressure causes him pain and I feel it is important to do what we can to save any vision he may have in that eye.
Susan
Date: July 15, 1998
From: Sarah J. Blake
Hi, Susan.
The key to deciding about my surgery was that my pressure was remaining high and not responding to the drops. The surgery I had done is called a trabeculectomy and is supposed to relieve the pressure in the eye by creating a drain system in the back of the eye. My cornea is permanently damaged, at least to some degree, and my doctor recommended a corneal graft, which I am told is the same as a transplant. I'm in transition between doctors now, so we'll see what the new one has to say. He did say that I was not really at risk of further loss because of the clouding but that a clearer cornea might improve my vision--basically like trying to drive your car before and after cleaning your windshield after a sandstorm.
My left eye has never been examined. I would need to have an ultrasound done to see what things inside looked like since no one can see in there. I had one of these done on the right eye in May. It's the weirdest experience I think I've ever had. It was kind of tickly feeling and made me want to cover my face.
Having a family member--especially a parent--in a given profession can be helpful or not, depending on how the family member approaches the issue. Medical professionals are taught to watch closely for problems. Perhaps assuring your mom that you're aware of the risks will help while you're emphasizing to her that you're making what you feel are the best decisions for your child.
Date: February 3, 2000
From: Linda Choy
dear Sarah & Jody,
now that I recall it, Kara's doctors are suspecting that she has neovascular glaucoma, this is a very difficult disease to treat - according to them.
Any comment or idea is welcome.
Date: February 8, 2000
From: Sarah J. Blake
Hi, Linda.
I looked this up and what I found was really technical. As far as I understand, it has to do with blood vessels growing in certain parts of the eye so that ane drain mechanism is blocked. There was also mention of a small anterior chamber. This is the part of the eye between the lens and the cornea. If Kara had a lensectomy, this explains why Dr. Trese must have felt it was necessary. Patients most often have red and painful eyes and very high pressures. Also, this type of glaucoma is mostly associated with very poor vision and occurs with retinal diseases. This makes sense why it would happen to babies with ROP.
I found an abstract concluding that surgeries had some degree of success. I didn't read it all because I didn't have a lot of time. I can look more if you like. This is just the gist of what I've found so far.