aswim in knits

Thursday, May 04, 2006

pictures soon, I promise ...

This week has been a tough week, and it's only Thursday. I was out of the office for a day and a half, and missed some coaching time, because of a particularly vexing vision problem that comes and goes. I've had symptoms of this condition since I was about 12 or 13, but only received a diagnosis earlier this year. The condition is called superior oblique myokymia (SOM), and it's a fairly rare vision disturbance. Only about 6000 people have been diagnosed with SOM.*

The link above gives the medical explanation. The layman's description is that I get double vision, with a pronounced shimmering or bouncing up-and-down of everything in my field of view. According to the neuro-opthamologist who finally figured out the problem, the likely origin is vascular compression of the trochlear nerve -- a blood vessel presses on a nerve which fires abnormally and makes my vision go nuts.

So, when this all happens, I get "bouncy vision" which leads to headaches. If the headaches and constant motion in my field of view persist long enough, I get nauseated. This week, my symptoms were bad enough and constant enough to keep me from driving -- if everything is bouncing up and down, it makes it hard to see other cars clearly!!

The good news is that this is a benign condition. It does not have any serious health consequences, beyond the annoyances that I described above. And, while some people experience symptoms on a nearly-constant basis, mine come and go. I had not had serious symptoms for a couple of months, until this weekend.

The bad news is that it is also not easily treatable. Some patients have shown limited benefits from certain anti-seizure medications. However, the medicines are extremely potent and the side effects are significant, and possibly worse than the annoyance of SOM. The other option is surgery -- a teflon pad is inserted between the artery and the nerve, which reduces the vascular compression. However, only a few doctors perform this surgery, and I don't think my condition is severe enough to warrant what is essentially invasive brain surgery. Right now, my best "treatment" is to get a lot of rest, as fatigue can make the symptoms worse.

The only up-side to all of this is that I can still knit!!! In fact, one of the only ways that I get any relief from symptoms is a pronounced "down-gaze" -- looking down instead of straight ahead, like looking down your nose at your lap. Or, say, looking down at a pair of socks-in-progress! So, since looking straight ahead makes everything bounce, there was no blogging (or any computer time, or driving, etc.) for a couple of days. But, looking down is good, so there was some knitting.

I'm feeling better now -- for no particular reason, other than perhaps resting. I promise, photos of a SOM-induced FO tomorrow, as well as a significant progress on another WIP!!!

* I'm sure that many more people are likely to have this condition. It took me several doctors and over a decade to get a diagnosis. In the past year, I saw 2 excellent neuro-opthamologists at two outstanding hospitals -- the Mass Eye and Ear Infirmary, a Harvard affiliate, and the Tufts-New England Medical Center -- and sat through hours of complex and expensive testing. Since Boston is a major medical center, and since my employer offers excellent health insurance options, I was lucky to have access to high quality care. I'm sure that a majority of Americans don't have this level of health care, much less those in the developing world ... so, I'm sure that others with this condition just aren't diagnosed.

8 Comments:

  • I'm so sorry to hear that you've been ill this weekend, but how relieved you must be to have a diagnosis and explanation for what must surely have been a worrying state of affairs.

    I'm glad that rest does the job for you, so that you don't have to consider the more invasive treatment options. Take care of yourself!

    By Blogger Ruth, at 11:06 AM  

  • Wow! Knitting actually helps with this? That part is good, at least. ;-)

    By Blogger Beth S., at 11:48 AM  

  • Oh, *hug* - I am glad to hear that knitting helps, tho!

    Does it also help to know that you won Peeve's shawl????

    By Blogger Chris, at 11:50 AM  

  • So glad that hear that you are feeling better. And glad that knitting was still okay :-) Oh, and I agree -- we are SO lucky to live in a state with fantastic medical facilities.

    By Anonymous Kathy, at 7:29 PM  

  • How do you spell relief? K-N-I-T-T-I-N-G

    By Anonymous Derek, at 10:47 PM  

  • Goodness, to think that looking down your nose at your knitting is beneficial ... so when you have this problem flare up you really can be told "Go get some rest AND knit!" Hope you're feeling better now tho.

    By Blogger Rhonda, at 12:46 PM  

  • Danielle, I hope that you find this comment. Unfortunately, I came across it three months after your blog entry, but fortunately, I came across it at all!!! I know all about your rare disorder because I have it as well. I also guide a support group for fellow SOMers, which is what we call ourselves. You can visit our site to see what other SOMers have to share about their experiences. I will post another comment on your most recent blog entry, directing you to this comment. Please feel free to contact me, or apply to join SOMPeople¬©. At least, now, you know that you are not alone with this disorder. All my best, Juds

    By Blogger SOMPeople, at 2:23 PM  

  • Ooops, I forgot to include the URL. I would love to blame my twitchy eye, but it's just age, I guess. Our site can be found at: http://groups.msn.com/Superiorobliquemyokymia/index.msnw

    By Blogger SOMPeople, at 2:25 PM  

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