A little more than a year ago, I wrote about problems I’ve been having with my eyes and the treatment I’d sought for the condition. Time for an update. Please feel free to skip this post if you’re a) squeamish, b) dislike hearing people talk about their health problems or c) really couldn’t care less about my health so long as I keep writing about sumo wrestling. It falls firmly into the realm of “too much information“, but it has pretty pictures.
For those who don’t follow links, I’ll recap – twenty-two years into life as a type 1 (juvenile onset) diabetic, I’m wrestling with diabetic retinopathy, a condition where blood vessels in the retina break and leak blood into vitreous humor of the eye. The body responds to this leakage by attempting to regrow vessels in the retina – this worsens the condition, as these new vessels tend to be more fragile and brone to breakage than the original ones. (99% of diabetics have some form of retinopathy 20 years into the disease. Despite keeping very close control of my blood sugar, I’ve got a very aggressive case of the condition. This appears to be little more than bad luck on my part.)
The preferred treatment for this condition is laser photocoagulation – basically, a doctor shines a laser through your dialated pupil, and burns holes in your retina. Those burns should cauterize the blood vessels and prevent new vessels from forming. I’ve had several thousand holes burned in eight sessions of treatment – each session tends to irritate the eye and makes it hard for me to work or drive for a week afterwards.
When it became clear that photocoagulation alone wasn’t solving my problems, my doctor recommended Avastin, an anti-tumor drug that, when directed through the eye, into the retina, can slow or stop blood vessel growth. While it’s worked well for other patients, it didn’t really accomplish antything for me. The blood vessels kept growing, and earlier this year, I had a very scary bleed in that eye.
I woke up and discovered a dark-red wash covering about half the visual field in my right eye. As I looked in different directions, it tracked my vision, slowly, floating across the eye to obscure other parts of my visual field. As it began to dissipate, over the course of a couple of days, it looked increasingly like someone had installed a lava lamp inside my right eye. Considerate of them, but it makes looking at anything close-by – a book, a computer monitor – a royal pain in the ass. When I experienced a similar bleed two weeks ago, I ralized it was time to try something different, as I would estimate that I’ve been offline or working at some sort of degraded capacity roughly a quarter of the time these past three years.
Turns out it was a very good time to go back to the opthalmologist. Turns out all the bleeding in the eye has built up scar tissue, and that scar tissue is pulling on my retina, causing it to warp. If I cover my right eye and look at a set of vertical lines, they’ll ripple and wave slightly in the left side of my field of vision. The more the retina ripples, the worse my vision in that eye will get.
A map of my left eye. The hill and valley around the fovea is relatively normal, perhaps a little thicker than in your eye.
A map of my right eye. The red mass on the left of the image is scar tissue. It’s pulling on the retina beneath it, and obscuring the fovea of the retina. Not a good thing.
A cross-section of the right eye. The nice, smooth curve of the right side of the image is what a retina should look like. That weird, rippled curtain on the left of the image is caused by that bubble of scar tissue, which is pulling and distorting the retina.
It’s pretty amazing the sorts of diagnostic technology that’s available these days. The images above are “tomographs” of my retina – basically, they’re maps of the thickness of the retina, generated by shining red lights in the eye and measuring the resulting back-scattering, using a technique called optical coherence tomography. (The tools made to allow this sort of imaging are made by Zeiss, and I’m considering investing money in the company just because they’re so freaking cool.)
The surgery done to correct this problem is high-tech to the point that it sounds more like Star Trek than something that should be available in Boston in 2008. It’s called “pars plana vitrectomy“, and the goal is to remove the vitreous humor, the jelly that fills the inside of the eyeball. This allows the surgeon to reach the surface of the retina and peel off scar tissue and abnormal blood vessels. The vitreous that eventually regrows is less conducive to the growth of new vessels than the old, fibrous vitreous currently filling my eyes. If the procedure goes as planned, it should be curative, halting the degredation of vision and freeing me from laser surgeries every few months.
But it’s a bit spooky. The surgeon makes three incisions in the eye, in the sclera (the white of the eye). One incision admits a fiber-optic microscope. Another allows the tool that scoops out vitreous humor. And a third pressurizes the eyeball so it doesn’t collapse while all this fiddling is taking place.
The online literature about vitrectomy had me braced for the worst. The sites I read suggested six to eight weeks of recouperation from the procedure. In some cases, the doctor finishes the procedure by injecting a bubble of gas into the eye, to hold the retina in place – recuperation, in those cases, also involves seven to ten days where you need to keep your head down, eye focused on the floor for 20 hours a day.
Fortunately, that doesn’t appear to be what I’m in for. And, according to my surgeon, the entire process has gotten much easier and less painful. The incisions he makes now are tiny, the size of 23-gauge wire (roughly half a millimetre), and don’t require sutures to close them. He predicts that the surgery will take roughly 45 minutes, and I’ll be conscious, though sedated. (Heavily, I hope.) I’d expected him to tell me that there would be a couple of weeks where I shouldn’t drive afterwards – he recommends taking two days off.
Actually, I plan on taking that week – starting with May 5 – off, and perhaps a bit more time besides. My experience is that having someone tinkers with your eyes – as my doctor did today, frying a few more blood vessels with a laser just for good measure – the universe, as a whole, is off-kilter for a couple of days. The knowledge that Berkman at 10 is likely to be a bit blurry to me, and the Clockwork Orange/Robot Chicken image of a surgeon tinkering with my eyes as I’m strapped in place, both give me a modicum of reluctance about the procedure. That’s counterbalanced by the hope that this surgery might, in fact, be a cure, and that my eyes could stop being something I worry about and simply return to being something I use… and appreciate.
On a professional note – those of you who are waiting for me to respond to invitations and requests to do something, there’s a decent chance that I haven’t done so because of eye issues. That probably isn’t going to get any better for some weeks to come, as there are several appointments and issues I have to address before this surgery. Furthermore, my eyesight is pretty bad at the moment, and as a result, I’m spending significantly less time in front of computers than I usually do. If I owe you a response on something, or you’re hoping to get input from me, you’re probably going to have to wait. Thanks in advance for your understanding.
Thanks for sharing all of this — it’s really scary-sounding, but I’m glad they’ve got some advanced treatments that will make it a little easier than you originally thought. The fact that they can diagnose the problem so clearly makes me hopeful.
I’m thinking of you — much love!!
Wow, so amazing. Thanks for the update (and for the caveat at the start – it was a bit gory but well worth it to read the intricacies of the situation), and best of luck. Sounds like you have a few (forced) weeks of relaxing and listening to music. Should be curative on its own.
Oh, I am sorry. I know you wanted to avoid the vitrectomy if you could. I hope it is curative, and much less awful than you fear.
Dear Ethan,
I’m a classmate of Rachel’s, and just wanted to wish you a quick and complete healing.
Though I’ve never had eye surgery, I recommend humor for healing – if you’re allowed to laugh after such a procedure, get yourself a pile of old George Carlin or Monty Python disks (vinyl, if you’re from my generation) or whatever it is that tickles your funnybone.
All the best,
Simcha Daniel
That sucks, man. I’m glad that the Star Trek procedure exists, and I hope that it works.
I am so grateful for all you do and your wonderful blog. Like all the rest I wish you good outcomes.
Hi Ethan,
I found your blog last year trought the Berkman Center, and want to wish you a quick healing, because we need you in the blogosphere!
Greetings from Argentina.
Yeow, Ethan! I read it even though I am squeamish. A cure would be so wonderful! I plan to inspect you in person soon thereafter. :-) Wishing you all the best luck and easy healing.
Ethan – I was going to write to ask how the surgeon appt. went, then thought if you wanted to talk about it, it would be on your blog. Amazing high-tech stuff, and sounds like the aftermath is shorter and less debilitating than you feared. High tech Western medicine’s been good to me, I’m projecting the same luck for you.
Ethan, this is a super resource for anyone else facing same condition. Thanks for the health technologists. All good thoughts your way–Heal up quick!
{{hug}} I’m glad to hear you have a date set, but yuck for all of the challenging bits. Still, I can’t wait to see your scifi vision afterwards!
If I can help, give a call.
*hug*
It’s no less spooky hearing it the second time, but it’s a relief to know that there is a date, and that it is slightly less onerous than originally anticipated. I send you love and good cheer for the lead-in, procedure, and recovery!
-Betsy
I wish you all the best – and our prayers remain with you
All the very best. You will be in our thoughts. Take your time. Heal well and quickly.
Ethan you are one of the strongest person I have meet-dispute all this complicated problems you all ways managed to go out and be your best. I hope and pray every things goes as you plan and wish. Every thing will be fine.
Ethan, I hope everything works out well for you.
I second Ed’s comments. I hope the procedure is speedy, successful and painless. Good luck!
feel better Ethan,
I never noticed you had square, multi-colored eyes :-) Get well soon!
Gosh Ethan! I’m glad there’s a hope for a cure in all this discomfort and scariness. Those tomography pictures are really something. “Vitreous Humor” always seemed like a good name for a snarkzine to me. Warmest regards for stable health through your surgery, an excellent operation, and delightful recovery. Hope to see you out here sooner rather than later. . .
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My son Sameer sent me this as I am now suffering from the same condition.
Has your treatment succeeded ?
Please let me know before I contact my consultant here in the UK.
Thanks
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From Zamboanga City, Philippines. Counting our blessings and thanking God for them – in a situation like yours Ethan helps buoy up sagging spirits.
I take comfort remembering Man’s Search For Meaning, the book Victor Frankl, M.D. wrote.
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