Below are the 20 most recent journal entries recorded in Tom's LiveJournal:

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Sunday, December 17th, 2006
12:26 am	Bioptically speaking... Just over a week ago, I braved the bitter Virginia cold to go see a low vision specialist out here. Never having seen a low vision specialist before, I wans't sure what to expect, but I wanted to try out a bioptic, since they are legal to use for driving here in Virginia. For those who are unaware, a bioptic is a pair of glasses with a lens attached for magnified viewing. A good example of one can be seen at www.biopticdriving.org. More on them in a bit... I met with the doctor, and went through a few vision tests so he could get an idea of where I stood, visually speaking. He had this awesome eye chart with huge letters, and lots more "in between" lines that you wouldn't get on a typical eye chart, so I could read several more lines than on a normal chart. I wound up seeing about 20/80 through the right eye, and 20/100 through the left. (At a more recent exam to have my new contact lenses checked for fit, I read 20/70, so it can vary depending on the conditions.) He talked about the laws in Virginia as far as getting a license with a bioptic, and I won't bore you with the details.. but it consists of a special exam, and a re-examination a year later. To get night driving privileges requires another special nighttime exam. All very complicated... He then sent me into a room to test out a bunch of different types of bioptics and monoculars (basically a binocular cut in half, as you might expect.) The bioptics definitely weren't what I was expecting. I had assumed it would be like looking normally with a small spot of zoomed in area that I could shift around to where I needed it to be, but the reality was that in order to look through the magnifier, I would have to completely focus through it, and wasn't seeing anything else until I re-shifted my focus back through the regular lens. It was also very difficult to get my bearing through the tiny lens. To read a sign would take three or four "peeks" through the magnifier to actually find it in the first place. I'm sure this would be something you would adjust to over time, but it felt very awkward compared to a monocular which was much more natural. The end result of the exam is that I am going to buy a monocular and keep it with me while I'm driving, in case I need to identify a distant object. I chose a 4x magnification one, which would effectively take my 20/80(ish) vision to 20/20 through the lens (albeit over a tiny area). With my vision what it is, I can get a daytime only license in VA once my CA license expires. Since my CA license is unrestricted, I see no reason to rush and get the new one. ;-) I'll report back at some point when I have a chance to play with the monocular in my day to day activities. (4 Comments |Comment on this)
Tuesday, November 7th, 2006
10:04 pm	Nystagmus hits the big time... Just finished watching this week's episode of House.. I won't say anything about specifics of the episode, so anyone on the west coast who reads this needn't worry about spoilers. Just found it interesting to note that the patient suffers from nystagmus, and they mention it a couple times during the show. I am going to try out the new silicone soft contact lenses in the near future, as my eye doctor seemed to think they might help out a teeny bit. I also have an appointment with a low vision specialist here in Virginia next month, to check out the possibility of getting fitted for a bioptic, which is a pair of glasses with a small binocular lens to aid in seeing distant objects. They are legal for use in driving in this state, and I am interested to see how well it could work for me. (Comment on this)
Thursday, August 17th, 2006
10:56 pm	Another nystagmite joins the world... Nearly four months ago, my sister gave birth to her first child (and my first nephew) and yesterday he was diagnosed with nystagmus. I hope he winds up seeing the world better than I can, and I think his chances are pretty good since there is more information these days, and doctors who specialize in eye movement disorders. It sounds like he has a null point in his lower field of vision, as he is looking down at everything. I imagine that if the movements turn out to be moderate/severe, surgery when he is still young would be the best bet and allow his vision to develop while he is young enough to see a larger benefit from the surgery. Fortunately for my sister, she has me to bug her and make sure the little guy gets the best possible care... maybe I'll never see the world as clearly as most of you guys do, but with some luck and medical expertise, perhaps my nephew can. (Comment on this)
Sunday, March 26th, 2006
9:38 pm	A video.... I don't know why I never thought of it before, but it recently occured to me that I could film my eye movement... Since I don't really notice the movement, I've always been curious how it appears to an observer, so I went and made a quick little movie of one of my eyes trying to focus on the camera lens. Trying to focus on something makes the movement more pronounced, so I don't think they move quite as much as they do in the video when I am just glancing around.. you can view the movie here: http://bandwidthninja.net:8080/eyes/wiggle.avi In other news, I'll be moving to Virginia in about a month to pursue a new job opportunity. I started the job about a month ago, and am currently working in Oxnard, CA, with the occasional travel out to the job site in VA. Of course, anywhere near DC is the center for all gov't contracting jobs, so if I hate the position there is plenty of other work out there, which is nice to know. It's going to be quite an adjustment from living in Southern California, that's for sure! The nice thing is that I have an in car GPS, so navigation won't be as scary as it would be without it... especially out there.. I've been a few times, and the signage is absolutely horrible! Thanks to the fellow nystagmites who I've talked to recently, about moving, and Virginia... your input was extremely helpful! For the hockey fans out there, don't panic.. I'm not giving up on my Kings.. that's why Center Ice was created. :) (2 Comments |Comment on this)
Monday, February 13th, 2006
10:25 pm	A year later... Apologies for the lack of updates, but there hasn't been much to report lately. Today, I had an appointment with my ophthalmologist to have a one year checkup on my surgery and see if my perscription has had any changes. He took a look at my eyes and said that things have healed nicely, and that he could barely see any evidence (scarring, or what have you..) of the surgery. As I always do in the room while waiting for Dr. Zdenek to see me, I played with the electronic eye chart to see if I had made any sort of progress. As always, I could read 20/100 all the time, and 20/80 all the time as well. I can read 20/70 most of the time as well, with a few mistakes of similar characters, like D and O, or F and P. Down at 20/60, I was getting somewhat frustrated because there were times when I could read all 4 letters, and other times they didn't take any shape at all. On a very rare occasion, I could pick off a letter or two at 20/50.. nothing at 20/40.. I didn't spend much time trying. The most obnoxious thing is that because of the nystagmus, the harder I concentrate and try and focus, the more blurred things get.. very frustrating! This is particularly true when checking the perscription change in each eye.. (you know the drill.. better here?... or here?...) I couldn't see any difference either way, really.. I'd love to get that giant contraption out in the middle of an outdoor area with lots of objects at varying depths so I could play with the different lenses and take my time figuring out exactly which one worked best for me. Dr. Zdenek talked to me about potentially trying soft contact lenses that correct for astigmatism in place of my gas permiable lenses. His thought was that with the nystagmus oscillation, the more rigid lens could be getting nudged out of place when the lens strikes the eyelid. We talked briefly about LASIK, and he said I shouldn't expect any added benefit if I were to have it (except for not having to rely on lenses or glasses) because the real limitation is in how my brain developed as a child. The neural pathways that get created as you learn to see can't be relearned well at my age, apparently. Incidentally, if someone can figure out how to do this, you'll be on my Christmas card list for life! I expessed concern about potentially pursuing a job opportunity in Virginia because I don't know if I'd be able to obtain a driver's license there. I had to go through several hoops in California to get one, and I hope I won't have to go through all that again if I decide to move. Dr. Zdenek was unsure of my options, so I'll have to wait and see on that... As far as the LASIK is concerned, I don't really see a point to it if there's not going to be any gain in acuity. Sometimes, it's nice to be able to take off my glasses, or take out my lenses and be able to read small print clearly... I don't know if it's worth losing that to be able to not bother with lenses in the morning... (2 Comments |Comment on this)
Wednesday, June 22nd, 2005
9:30 am	Discouraged... Been a long time since my last update here... sorry if you've been checking in hoping to read the latest info with regards to my eyes and I haven't had anything to say. If anyone has any questions, I'm always reachable through email (I think it's in my profile), or you can post to any journal entry here and I'll get back to you. The eyes feel fine and look normal again... the difference in my vision is honestly really tough to tell in my day to day life, which is unfortunate. This past weekend really reminded me how different my vision is than someone who sees "normally." My girlfriend and I took a weekend trip up the coast to Cambria and San Simeon, which if you've never been to, do yourself a favor and go... it's a beautiful, quiet beach town that hasn't changed much at all since I was a kid. Anyway, we made a rest stop just beyond Santa Barbara, and while waiting at the stoplight, I asked my girlfriend which lane I needed to get into to get back onto the northbound 101. She struggled to read a sign in the distance and commented that it was difficult to see the difference between the words "NORTH" and "SOUTH" from that far away. I squinted and struggled but was unable to even see the -sign- that she was trying to read. It was pretty humbling, to see just how differently we see things. Thankfully, she'll always be my navigator. I guess I'm just struggling to accept the fact that there is never going to be a magic cure for what I have. I think part of me was hoping that the surgery would make a significant difference in how I see the world, even when going in I knew it was going to be a minor improvement, if any. I suppose there's always hope, but mine has greatly diminished lately. I don't mean to give the impression that I'm at all displeased with the surgery. Even the minor improvement was worth the attempt, and like my eye doctor said, my brain is still adjusting to the reduced movement so I may notice more changes as time goes on. I figure that right now my best hope for improved vision is for ultra fine laser surgery, or something like that. If it can take people from 20/20 down to 20/15 or better, then I imagine it might help me down a line or two on the eye chart too, right? I haven't done much research lately in that field.. I imagine that the technology keeps on improving, so the longer I wait, the better the results will be, should I ever decide to go that route. Advancements like the "wavefront" technology where they create a map of your cornea rather than using a predefined map, are definitely a step in the right direction... maybe someday I'll see that sign. (1 Comment |Comment on this)
Sunday, April 24th, 2005
10:38 am	No news is good news... Sorry for the lack of updates here, but there's really not much to report at this time. I didn't see much point in taking any more eye pictures since the healing progress is mostly complete. I'll definitely take a photo once it's completely healed to show the final result. Apparently there can be a small discolored bump or something like that at the incision points, so I'm curious to see how it will look in six months. (3 Comments |Comment on this)
Friday, April 15th, 2005
8:15 am	Eye appointment results... I visited my local eye doctor yesterday for a post-surgery checkup. If you've been following this journal, you know it's been about 2 months since my surgery. (No picture update yet for today.. sorry about that.) So my appointment was at noon, and I was led into the office to wait for Dr. Zdenek after a woman came in and did the standard eye chart reading business. Once she left, I had some time to play with the electronic eye chart and give myself a bit of a self test. At 20/100 I was able to read everything with 100% accuracy. At 20/80 I was able to read at about 95% accuracy.. I would occasionaly confuse a P for an F, or 2 other similar looking letters. At 20/70 it was pretty similar, but maybe more like 85-90%, but still quite good. I spent a lot of time looking at the 20/60 lines and I would estimate that I could get half of the letters right. At 20/50, I could occasionally pick off some of the easier letters, like T, and I, but mostly I could only discern the general shape of them. Dr. Zdenek came in and took a look at my eyes and said from his recollection of my nystagmus, the movement was down by at least 50%. We did the standard perscription check and there was little, if any change. He looked at the progress of the healing, and said everything looks fine in that regard, which is good to know. He had me read the eye chart again for him and checked my history to see if I had improved on my previous best, which he said I had. While he was there, I read 2 of the 4 letters on the 20/60 line, which matched what I had been seeing earlier before he came in the office. His opinion on the brain's adjustment to the surgery and subsequent reduction in nystagmus oscillations was that my vision will probably continue to improve over the next year, and he thought I would ultimately be able to read 20/50, which would be awesome if that pans out. So the end result of the appointment was that the healing was looking good, my perscription is essentially unchanged, and he wants to see me again in six months to see how things are progressing. If anyone in the Southern California area who needs an eye doctor and you're near Reseda, I would strongly recommend Dr. Zdenek. I've been seeing him for about 20 years now, and he's fantastic. His website is http://www.fyeye.com/ if you'd like contact information. (2 Comments |Comment on this)
Saturday, April 9th, 2005
11:04 pm	ANN Conference The American Nystagmus Network biennial conference will be held this year in Los Angeles, California. It will be from July 8th through 10th at the Embassy Suites hotel. ANN list member Edie Glaser has put this page together with a bunch of info about the conference. According to list members who attended the last one, it's definitely an event worth attending. Here's the page with the relevant info: http://www-rcf.usc.edu/~edieg/ANN/index.htm (Comment on this)
Friday, April 8th, 2005
9:07 am	7 weeks Ok... so I never quite got around to doing a 6 week photo and update. Here's week 7: http://bandwidthninja.net:8080/eyes/eyes-7week.JPG I have an appointment with my local eye doctor next week's Thursday. I'm hopeful that my perscription has changed a bit, and we can sneak out a bit better vision with some fine tuning, but I have no idea what to expect. It's clearly obvious that the movement from the nystagmus is greatly reduced, but the effect that seems to have had on my vision is very difficult to gauge. Looking at an eyechart will help me get some perspective, perhaps. As for the healing, they look pretty good. The extreme left and right of the eye whites are still pink, but that's mostly noticeable when I look to the sides, and not so much if I'm looking straight forward. I'm not sure how long that is supposed to take to heal, but it's not at all uncomfortable, and I am wearing my contact lenses everyday like I did presurgery, so things are essentially back to normal. I just wrote the final check to pay my share of the medical expenses for the surgery. All told, I was on the hook for fifteen hundred dollars or so for the consultation and surgery with Dr. Hertle, but of course that number will be different for everyone since all insurance companies and plans are different. That number obviously doesn't include travel and hotel expenses in Pittsburgh. (2 Comments |Comment on this)
Friday, April 1st, 2005
7:27 am	6 week update... No real changes to report this week. Still haven't scheduled an appointment with my local eye doctor, which I need to do. I am heading out to Las Vegas this weekend, and the digital camera is already packed so I'll try to grab an eye shot if I remember to tonight. Otherwise, I'll take one when I get back. Either way, I'll be back on Sunday and hopefully update sometime soon after that. Have a great weekend everyone! (Comment on this)
Saturday, March 26th, 2005
10:47 pm	5 week update Sorry I didn't post the 5 week update photo yesterday.. bit of a hectic weekend here. As always, here's the weekly snapshot for healing purposes: http://bandwidthninja.net:8080/eyes/eyes-5week.JPG So we're into the window where I am supposed to be seeing the final results (4 to 6 weeks), and I really have to say that it's difficult to notice much of a difference as far as central visual acuity is concerned. I think since everything feels pretty good healing-wise, I will call my local eye doctor and set up an appointment to have my perscription checked. I'm hoping maybe my astigmatisms have changed shape, or eyes are slightly different, and that maybe a new perscription can eke out a small improvement on the eyechart. (Comment on this)
Friday, March 18th, 2005
5:36 pm	4 weeks! It's been 4 weeks since the surgery date.. as always, here's a picture to see how the healing is progressing: http://bandwidthninja.net:8080/eyes/eyes-4week.JPG Most, if not all of the yellowing in the left eye has vanished, but the right eye still gets agitated by contacts, probably due to the bloodshot appearance in the corner of the eye. I've alternated between contacts and glasses this week, and on Wednesday I wore my lenses for over 15 hours. I was going to take them out after work since the right eye was irritated, but it seemed to get better later in the day so I decided to leave it in until I went to bed. I've exchanged a few emails with Dr. Hertle as well, keeping him informed on my recovery, and telling him about this journal. He's going to point future patients to it as a reference, which is pretty cool! He's been very helpful in answering all my questions, and anyone who isn't sure about him can rest assured that he truly does care about his patients and I feel very comfortable in my choice to go see him. I am going to schedule an appointment to see my local eye doctor here for a followup exam in a month or so, and have my records faxed from UPMC so I don't have to travel all the way out there for a followup so soon. Have a great weekend everyone! (5 Comments |Comment on this)
Saturday, March 12th, 2005
4:01 pm	Week 3 photo As usual, my weekly photo (taken on Friday which would be 3 weeks after surgery) is up for viewing at http://bandwidthninja.net:8080/eyes/eyes-3week.JPG. My right eye still gets quite agitated by my contact lens being in there, and I think it shows since the bloodshot appearance has gotten worse from week 2. I think I'll be wearing my glasses a bit more this week to give that a bit more time to heal. I have heard from a few of you who have either seen Dr. Hertle recently, or are going to be seeing him soon, and I wanted to wish you all the best of luck. You're in excellent hands with him, so there's nothing to be afraid of. I wish I could say that I see a big difference in my vision after the surgery, but so far any change has been very minimal. I'll reserve judgment until after they've fully healed and I can wear my lenses comfortably. I also want to have my perscription checked to make sure everything is optimal, but at least people who looked closely at my eyes before and after the surgery can see that there's a big difference in the amount of eye movement. (Comment on this)
Thursday, March 10th, 2005
5:11 pm	Clouds... I think there's quite a bit of healing left to go yet.. While wearing my contacts, I notice that they get clouded over very quickly. By the end of the day, if I haven't cleaned them off, things can be pretty blurred through lenses. I am back in glasses today to try and let the eyes heal up a bit more. I noticed a bloody spot on the right eye that has appeared in the past few days, and the outer areas of the eyes still look pretty raw. Thanks to everyone for all the comments and emails you've sent in the past few weeks. It's great to know that my journal is able to help people out in some small way, and if you ever have any questions, don't hesitate to ask. (2 Comments |Comment on this)
Saturday, March 5th, 2005
5:30 pm	2 weeks.. I wore my contact lenses both yesterday and today... I wish I could say pain free, but the right one is being a little bit obnoxious. I snapped another photo yesterday for the 2 week milestone. It's available to view here: http://bandwidthninja.net:8080/eyes/eyes-2week.JPG. Now that I'm looking at it, I should probably go do something about those mutant eyebrow hairs. For the squeamish, this one is fairly normal looking. The eyes are mostly white, with some signs of pink at the edges. There's a tiny bit of blood near the center of the left eye (on the right side of the photo) as well. Visually, it's hard to say if there's a difference yet. It will be interesting to see an eye chart in a month or so... (2 Comments |Comment on this)
Thursday, March 3rd, 2005
5:19 pm	Back in glasses... I wore my contacts yesterday for about 8 hours, and things looked roughly the same as they used to. Of course it's hard to say one way or the other since I can't just flip a switch to see how things used to look. This morning, my eyes were more bloodshot looking than they have been lately, and when I tried to put my right lens in, it was clearly not going to happen. I may try and pop them in this evening for a while to readjust to wearing them, but if there's any pain, I'll just continue to wait and let things heal up a bit more. I did get a headache midway through the day while wearing them yesterday, but I have no idea if that was related to the surgery or not. Tomorrow will be 2 weeks from the surgery, so I will be done with all the medication at that point. It will be nice to not have to carry around eyedrops with me wherever I go! (Comment on this)
Tuesday, March 1st, 2005
8:23 pm	Lenses tomorrow I am finished with one of the two types of eyedrops that Dr. Hertle perscibed, and with my eyes returning to a somewhat normal look, I am going to try out my contact lenses tomorrow. I'm excited to see if I can notice a difference since this will obviously be the first time I have worn them since the surgery. Today as I was putting in my eyedrops, and wiping them clean with a tissue afterwards, I found one of the stitches which had come out. It was a tiny little blue thing, which you can barely see in the first image I posted of my eyes. There are still a few down there, but it's nice to see that they're coming out. I'll try and update tomorrow with news on how the lens wearing went. (Comment on this)
Saturday, February 26th, 2005
4:53 pm	One week later... Hard to believe it's only been a week (and one day) since the surgery, but that's what the calendar says. I took a picture just a few minutes ago to show the difference between a week ago and now. Again, the same warning applies: If you don't like blood, or seeing something wrong with someone's eyes, please don't look. They do look much more normal now, though. The image is at http://bandwidthninja.net:8080/eyes/eyes-1week.JPG. You can see from the flash marks on both images that the eye alignment is pretty much exact, which I'm very pleased about. I hadn't noticed the yellowish discoloration in the left eye (the right one in the photo) before I took the picture. Not sure what is causing that, but it still looks better than the red color they were a week ago! ;-) I've been free from the strong painkillers for a few days now, and haven't even bothered taking any advil or anything like that for the past 2 days. The main discomfort I feel is when I look to the extreme right or left. Otherwise, things are mostly back to normal, but there are still some very mild feelings going on where I can tell that something was done to them. Vision wise, I haven't noticed much in the way of changes. I think after the 10 day mark, which is coming up fast, when I can stop taking one of the 2 kinds of eyedrops that Dr. Hertle perscribed (the ones that sting a bit), I may try wearing my contact lenses to see how that goes. (4 Comments |Comment on this)
Thursday, February 24th, 2005
6:39 pm	Eyes of a madman... I have a photo of my eyes online. It was taken Sunday morning, which was two days after surgery. If you'd like to get an idea of what they look like, you can view it at http://bandwidthninja.net:8080/eyes/eyes.jpg. If you're at all queasy about seeing blood, or anything wrong with eyes, you'd be better off not looking. Dr. Hertle was kind enough to send me an explanation of the surgery, since people at work were curious about what he did. Here's what he had to say: Explaining the surgery is easy. When you look at an eye you see a white surface. What's actually there is the white of the eye covered by a clear cover called the conjuntiva. This is actually what is cut, we never enter the eye ball itself. If you look at the eye you'll notice the area where the colored iris meets the white area. This is called the limbus. From the limbus the eye muscles attach about 6mm back. They are not a real deep red like you'd think, they are actually pale pink. You never notice them really unitl you look to the far left or right. So after we cut the conjunctiva we rotate the eye either to the far right, or far left. Then we go into that small cut and place a small hook around the muscle and pull it through the incision. We remove everything from around it, place a suture to hold it, then cut it off. Then we measure how far we want to move it, and reattach it. Then we close the conjunctiva. I hope this makes sense. But the muscles are not way in the back of the eye, they actually attach relatively close to the front area of the eye. Not really hard to find at all. The eyes are looking much better today. The white is showing through again, and they look bloodshot rather than completely blood-filled. Hopefully I'll be able to take my contacts for a spin sometime next week. (Comment on this)