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Saturday, April 19, 2008

Retinal Atrophy

Scar atrophy post sub-mac

Some history before the update. I have Ocular Histoplasmosis Syndrome or POHS which has caused the total loss of central vision in my left eye (1990) and visual field losses in my right as well. I had sub-macular surgery in the right with Dr. Matthew Thomas back in the dark ages circ. 1993, and I’ve been stable since baring a small inflammation in 1995 controlled with prednisone. Since, I’ve developed severe light sensitivity due to many factors including a pigmentation migration from the areas around the last scar / vessel that blew and the fact that my pupils no longer contract normally, but stay open to 7 or 8 mm (full dilation) most of the time.

Well, about three weeks ago, I had a sudden decline in visual acuity from about 20/35 to 20/70 (all this in the right eye, since the left lost all center vision in ’91). Visual field disturbances in all four quadrants. Eye pressure up to 22 in the right eye an only 9 in the left. Not good at all. That way a Saturday night in the ER.

Monday I saw my regular ophthalmologist. Vision still down at 20/70; eye pressure up to 24 or 25; 25 being the beginning of the range for being concerned about glaucoma. Regular ophthalmologist pontificated and told me to go home for a month and I might “want to buy a magnifier” – the dolt!

I called Thomas’s office and had an appointment for 9 am that Wednesday. Gotta love working with professionals! Even his office staff is the best!

After spending most of Tuesday fighting with the Mason Eye Clinic about whether or not they were going to give me copies of my records including the floresine angiograms they took (I won after several hours, multiple conversations with my tape recorder going, and the promise that if I didn’t walk out of there with a CD with my pics the next call would be to a lawyer, AND a phone call to Dr. Thomas’s office to have them call and apply pressure), my mom and I went to St. Louis. She flew in from Pennsylvania Monday morning to go with me and is still here.

Thomas took some pics and angio and an OCT. No bleeders, no inflammation, no fluid at all in the OCT. (Cool test, btw!) But I’ve a record of being able to see what’s coming long before they have anything to shoot at, sometimes as much as six weeks. So. Come back in two weeks if no improvement or four if it gets noticeably better. Sooner if something drastic happens.

I’m back in two weeks (this Wednesday, April 16th) They can get me up to 20 / 50 with best correction. Again, no sign of vessels or a bleeder or any fluid registering in the OCT; the one spot that looked like it might have been the beginning of an inflammation is now totally quiet.

The conclusion. Atrophy of the surgery scar and surrounding tissue. Visual acuity will wax and wane as the retinal tissue continues to deteriorate. Nothing to be done. Nothing. Go ahead and get my new glasses. (I have an RX from December I’ve been too busy with depression and other things to get filled) Come back in a month for monitoring in case it IS actual histo activity that I can see before they can. But apparently this is something that they’ve seen before. The sub-mac surgery gave me fifteen years and no re-occurrence, but now it’s going to just fade out as the tissue atrophies.

I’m not sure HOW I feel at the moment. While I wasn’t sure I’d be able to stand getting a shot in the eye every couple of months, I was willing to try, to at least attempt to fight it. But now I’m told there’s nothing to fight. The fight to maintain and make best use of my vision has consumed most of my adult life. This started when a routine eye exam at Sears resulted in the optician saying "Did you know that you have large white spots on your retinas?" when I was 23, and I’ll be 43 near the end of this year.

The last few years have been a major battle with the photophobia, but we’d just gotten the pain management under control with the use of prosthetic contacts with a 2mm pupil and a total black layer under the rest of the “iris” of the contacts, which are a dark brown, rather than my own green to further block the light. It was working. Almost no headaches for eight months. I still couldn’t see as well with the contacts in, and I still couldn’t see outside in the sunlight. But my quality of life is much better.

And now this. I’m just -- pole-axed. I’ve longed for the constant anxiety and battles to end; I considered refusing further treatment and just living with whatever came so I could live my life without the constant fear and battle. And now this. I’m so damned pissed off that I don’t even get to make THAT choice that I don’t know which way to turn. No treatment. No research into any way to boost or support the tissue that’s left. Nothing.

Thomas was great. Explained it all twice, so my mom and I could take it in. Walked us through the pictures and the OCT printouts. He’s a marvelous doc and an excellent communicator. But. damn.


KnitNana said...

What is there for me to say? I'm so sorry...

The Kutz Family said...

Reading your blog reminds me of my hopeless situation as well. I am so sorry that you are at a stands still. The reality is, it is so easy to lose hope when nothing can be done. To the doctors, they are just tests ... but to us, its life. I really hope the nasty buggers make an appearance so you can atleast get a treatment. I will tell you though ... my doctor gave me an injection without verification from the tests. We knew what was happening and we weren't willing to wait for them to show themselves ... the little bastards!
Unfortunately, the side effects from the injections are causing terrible floaters which do just as much vision damage. So I'm at a stand still myself. I don't want another treatment b/c floaters aren't irreversible, unlike bleeds.
Giving up seems so much easier. Just live with it and pray for the best ... easier said than done.
Hang in there and keep us updated!
~ Rebecca