Her Eyes Are Perfectly Healthy

From James:

Short version: Events of yesterday and today have made the cause of So Young’s vision loss clearer, and she is gearing up for getting her brain zapped.

Long version: Yesterday afternoon, after a phone call from our neurosurgeon Dr. Lim, I scheduled an appointment with our optometrist check So Young for a condition called papilledema. Papilledema is the progressive loss of eyesight caused by intracranial pressure (ICP). If So Young was suffering from papilledema, Dr. Lim could install a shunt to ease the pressure and in turn restore her sight, but he would need to act quickly, because she could lose her vision completely if he did not. The downside of the shunt is that it would delay radiation by at least 10 days. So far, Dr. Lim has always insisted that ICP is not the cause of her vision loss, saying that it is instead caused by “the tumor encroaching on her visual pathway.”

Dr. J. (the optometrist) was pretty shocked when he performed his examination. So Young’s last appointment was on September 14, and her eyesight was 20/20 with correction at that time. Now she cannot read a very large letter from across the room or large letters close up, with or without correction. The vision loss has been quick and dramatic. The good news is that her optic nerve is healthy — just as healthy as it was 3 months ago — which means that she does not have papilledema. Everything about her eyes, going back to the thalamus, is healthy and normal.

This morning, we had another short-notice appointment, and with a particularly rare specialist at that: a neuro-ophthalmologist, who focuses on the neurological aspects of vision function. Dr. Hoffman also performed a thorough examination and determined that So Young basically has 4/200 vision (vs. 20/20), which means that she can see at 4 feet what a normal person can see at 200 feet (or something to that effect). This is a very rough measurement, because frankly everything is blurry to her all the time. In one interesting test, he determined that So Young can accurately identify colors when both eyes are used, but cannot when using only one eye. Also, she says she sometimes sees an object clearly for a split second, and then it lapses into blurriness.

Dr. Hoffman agreed with Dr. J. that the optic nerve is not the problem. He hypothesized that the tumor is somehow affecting the lateral geniculate nucleus (LGN), the part of the thalamus that relays visual information to and from the visual cortex. The function of the LGN is largely unknown. Dr. Hoffman said that he could not predict whether the tumor shrinking due to radiation would cause her vision to return. He said that tumors of this type are very rare, and nobody has the experience to guess the outcome of such a case. He has seen maybe two or three such patients in 30 years of practice.

Overall, I was encouraged, because I have been worried about the papilledema issue for a couple of weeks now, and although the doctors reassured me, I didn’t feel that it had been adequately considered. If I had known you could check for it at the optometrist, I would have done it a while ago. So Young, on the other hand, was discouraged that Dr. Hoffman did not say that the tumor shrinking would cause her vision to return.

As I wrote in a previous post, So Young’s radiation therapy is going to start this Friday, December 17. It will take place every weekday (except Christmas Eve and New Year’s Eve) for 5.5 weeks, so it will end in late January, perhaps January 27 or so. It’s hard to believe this, but we really haven’t treated the tumor at all yet. It is over a month after the diagnosis (November 12), and really we have only done diagnosis after diagnosis and planning so far.

So Young went wig shopping with her dear friend Kim today. We also won these terrific, gourmet cupcakes from Minnie Bliss Cupcakes thanks to Jenn and received a delicious dinner from Ashleigh’s small group. The electrician has started installing the new recessed lighting, and So Young is de-“lighted,” so to speak. The girls went to bed very peacefully, unlike last night, which was a bit of a fiasco.

Everybody is asleep, and I’m thinking I should have invited the neighbors over for dessert, because you think I’m skinny now but these great meals and desserts are putting an end to that quick…


4 Responses

  1. I can’t figure out how to say this without sounding like a complete and utter insensitive jerk. Not that it’s ever stopped me before. But in a weird way part of me is grateful that your eyes started to go–it got your attention strongly enough that you went to the doctors and got your diagnosis. I know it’s easy enough for me to say that, since I’m not the one it’s happening to.

    So, now that this blindness has performed its function and gotten you diagnosed, can it go away now?

  2. After all this, now at least you have a clue of what is and isn’t. Let’s hope for the best, I keep praying. Good luck on Friday. I think of you and your family’s strenght a lot, it’s impressive.

  3. Good luck Friday our thoughts and prayers are with you and your family.

  4. Hi again.

    I don’t have a direct email to you guys, so here is something was sent to me by a friend. Not sure if you guys could use this. Maybe this is another example of a timely God. He is amazing. I know you guys have help and support…………


    May God guide the doctors and give you peace as you approach Friday’s appointments.


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