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The Neuro-Opthamologist Visit…At last

I finally got to see the neuro-ophthamologist and it was quite a fascinating experience. I’ve been wondering what my actual deficit is because sometimes I think I can see certain things and other times not at all. For instance I can’t see my left hand if I just bend my arm at the elbow and hold it up. It turns out that I didn’t lose the ENTIRE left periphery, though as you can see from the picture, quite a bit of it. What I did lose though, is essentially the lower left quadrant of BOTH eyes, which I hadn’t realized at all. All of the black areas in the chart are where I have a visual deficit now, including that interesting spot on the right side of the right eye. I’ll have to now revisit my brain book and the visual processing path to further investigate the crossing of the optic nerves and the optic chiasm and such.

One very interesting thing we learned is that each state has different rules about driving, specifically some require a visual screen test like this one whereas others do not. So LEGALLY I would not be able to drive in Virginia any longer, but New Jersey does not have the requirement so I could still legally drive there. Think about that for a second! Do you know what the law is in your own state?

I am definitely not driving anytime soon, though, if ever again. My blind area aside, I would be much more concerned with my reaction times, given my slower processing of visual information overall. The doc was pleasantly surprised to hear that I have pulled myself from driving, as clearly the opposite is the norm, in terms of people driving when they really shouldn’t be.

Bottom line overall is that the loss seen here is essentially permanent. I will be getting glasses to correct the eyesight in general once I finish the radiation, my brain has settled, and I can get a useful prescription. I see my future non-driving life as an adjustment, but not much of one at all given the public transportation in the DC Metro area anyway and the self-driving cars coming anyway.

I the most amusing part of it is that because I’m left handed, the most natural place for me to put stuff and look is directly in the place where I cannot see anymore. I guess it is time for me to become a right handed person and join the majority of the world…good thing I’m fairly ambidextrous already. I just have to laugh at the circumstances. things could clearly be worse. I’m happy to start getting some data to work with. 🙂

The Before and After MRIs

I finally got myself a copy of the post-surgery MRI. So here are the two next two each other. The original A-A-Ron is on the left. On the right is an MRI that I had about two months after the craniotomy. It is clearly not a one-for-one of just empty space. You can see a small black cavity that still exists, but otherwise my brain has actually expanded back into the space it should have been occupying in the first place. The saggy neck on the left has clearly gone away. There are probably other interesting things that my eyes really can’t see at the moment…but it certainly fascinating to just look at the images side by side. The brain and modern medicine are miraculous.

A human factors blog

The steroids have me back up in the middle of the night and this morning I started running through a list of human factors issues we’ve dealt with during this ordeal. As I said before, I’ve seen lots of things from the outside in over the years doing user research. Living IN them in a whole different experience. Here are a few fun ones since we’ve been here in Philly doing the radiation and chemo:

I swear the town we’re staying in has mixed up all the traffic signs to mess with me. The regular green and white street signs are gold and blue. There are hospital signs that are yellow and black like deer crossing signs. There are also red and white hospital signs. I have yet to see the standard blue and white H signs. My wonky eyes already have difficulty processing, so this just adds to the amusement.
I know that Enterprise software systems rarely talk to each other and share data. We’ve experienced this multiple times over. The healthcare part of insurance and the pharmacy part of insurance have given us the run around multiple times because of miscommunication between what the doctor is prescribing, which pharmacy is dispensing it, how many pills are dispensed, when we are allowed a refill, etc. I have a pharmacy support person and a healthcare support person, both of whom we’ve had to call on multiple times to sort through the various prescriptions and treatments.
At a single doctor’s office, it turns out that even though you have an appointment for labs and the doctor each week, there are multiple sign in systems and the lab can only call you if you are signed into their system but the front desk doesn’t necessarily know this, so the lab people have to wander around looking to see if they can grab the patient prior to the doctor appointment. Ah, the reality of workarounds. This, of course, has resulted in us and probably many others just sitting around waiting for no real reason.
Also, we get these printed sheets of all my appointments that are completely useless. They are many, many pages and trying to actually find the time of my appointment in them is just silly. The nurses printing them out just shake their heads and smile because they feel our pain.
I’ve learned medication management is a nightmare, especially when you’re on 6 different medications, some requiring food, some requiring an empty stomach and some based on some other parameters. It is hard enough for Mom and I, so I can only imagine an aging couple who are working with both of their medications at once.

I certainly have a much better appreciation for all of this, even though none of it is surprising to me. Plus, we’ve only got 2 and a half weeks of radiation and then most of these issues will go away altogether anyway. 🙂

Unlikely future career or hobby options

I’ve been amusing myself with making lists of things that are probably out of my future career or hobby options. For instance, it is unlikely I will be judging any graffiti contests, probably not becoming an uber driver, and professional Where’s Waldo finder seems to be out. I’m probably not going to edit action movies or monitor security cameras. Crossword puzzles aren’t so easy anymore. Sewing/knitting/crocheting or anything of that nature is not likely. Pretty much anything that requires split second reaction times or attention to fine detail is probably out. This just forces me to be a little more creative in considering my options. Things that don’t necessarily have strict time limits. Things that are perhaps music or art related, though I’ve never really thought of myself as creative in that sense. Guess we’ll have to see. Perhaps A-A-Ron was suppressing my Picasso or Beethoven skills all along. I am not holding my breath on that, but I’m willing to test the waters. Worst thing that can happen is I try and realize I’m as terrible as I thought I was.

And of course, the neuro-ophthalmologist could tell me this week that my vision will be back to normal before I know it and this will all be moot. Who knows!

In the meantime, I’m taking suggestions if anyone has any for other activities.