My wife, Cessna, has been having some vision problems, and since so many friends and family members have asked for details through email and all the social networks we’re on, I thought it might be easiest to publish the info here and just link to it. This is my version, not hers, so I hope you and she will forgive my inaccuracies.
For a number of years Cessna thought she had more floaters in her eye than normal. Three years ago her optometrist noticed some minor irregularities on her retinas, but no one thought it was anything serious. Cessna teaches Aikido so she rolls and falls a lot, and at one point she noticed a few flashes in her eyes and other irregularities. She had some tests by our HMO’s opthalmology department, which merely confirmed that yes, there was something on her retinas, but no big deal.
Then in June of this year she started having more serious things in her left eye: blobs of stuff, larger than the usual floaters, that more severely obscured her vision. She returned to opthalmology who diagnosed her with retinal vasculitis, inflammation of the blood vessels in the eye. They suspected the inflammation was causing a reduction of oxygen in the blood and the eye to therefore generate additional (undesirable) blood vesels as well. The blood vessels (veins, arteries or both) were leaking some blood into her eye, and that’s what was obscuring her vision.
The doctors started running all sorts of tests: x-rays, MRIs, blood tests, etc. They also performed eye angiograms using injected fluorescein dye, which enhances the image of the blood vessels and apparently can actually show the blood leaking. They confirmed their diagnosis, but Cessna had a pretty nasty allergic reaction to the fluorescein. She had a second angiogram and the reaction was so severe, even with a dose of Benadryl, the assistant was ready to administer an EpiPen.
Although the doctors were moderately confident in the diagnosis of her condition, they still didn’t know what was causing the inflammation so they didn’t know how to treat it. They told Cessna that if it didn’t go away (and it didn’t appear to be) she might need to start using immune-suppressant drugs like Humira to reduce the inflammation. These are nasty drugs for anyone, but Cessna doesn’t have a particularly strong immune system to begin with. The doctors also said they might want to inject Avastin directly into her eyes to halt the growth of new blood vessels. (Yeah, my thought, too.)
The optometrist suggested Cessna get the advice of a nutritionist, which she did. If there was anything that might avoid the immune-suppressant drugs it was worth a try, so Cessna had another slew of blood tests looking for food sensitivities. The result was that she started an incredibly strict diet in mid July. We’re not just talking gluten-free; we’re talking everything-free. It’s a diet based upon her specific sensitivities.
That’s the course she was following until a week ago, when her right eye (which was the good one) suddenly became completely occluded. She couldn’t see anything through the floating mass. We went to the opthalmic experts the same day and they told her it was blood — a lot of it. But the recommended treatment was the same: maybe the Humira, but just wait and see. Well, that’s a bad joke since she now couldn’t see well enough to drive or do many other things. And there wasn’t any indication it was getting better. In fact, it was getting worse.
We decided to go outside of our HMO and get second opinions from other local opthalmic gurus, and that’s what we’ve been doing for the past three days. Here’s what we’ve been told so far:
- The diagnose is still retinal vasculitis.
- They don’t know the cause, but there are still a few more tests that will be done.
- If they can’t find a treatable cause, they may want to give her prednisone. But that’s a steroid with all sorts of bad side effects — Cessna had an aunt who died from taking it long term — so it can’t be used for more than a few months.
- If that doesn’t work, then they’re talking about Humira, etc.
- They used ultrasound today to determine that she doesn’t have any retinal detachment. (I got to see this in real time. It was an amazingly clear picture, taken through the eyelid and all.)
- The blood in the right eye might dissipate by itself, but it’s going to take “months”. If it doesn’t, they’ll have to remove the blood surgically.
- The doctors really want to see what’s going on in the right eye, but they can’t because the blood is in the way. Once it’s gone (on its own or via surgery) they want to do another fluorescein angiogram, but due to Cessna’s reaction she’ll need prednisone and Benadryl beforehand.
- Once her eyes clear, the doctors also want to go in there with lasers and zap the extra blood vessels. Apparently she’s already permanently lost vision in those spots anyway, but it doesn’t sound like they’re too critical.
At this point Cessna’s hanging in there. It looks like she’s got another week of tests and doctor visits, and the extreme diet continues. The best news came today from the first doctor to tell her that he didn’t expect any of this to be permanent. He wasn’t sure, of course, but he told her she should expect to recover her vision.
Thanks to everyone for your good wishes. I’ll pass them on to Cessna.