It’s like a Stroke In Your Eye Pt. 2

For as long as I can remember I have always received the best compliments on my eyes. So you can imagine my sadness when my diseases started attacking my eyes. I knew that they wouldn’t change their appearances, at least permanently. Short term, there were a few periods of time after some transient blood clots that I dealt with ruptured blood vessels that left my eyes bloodshot and dingy looking for a few weeks. I am sure I thought this was more noticeable than other people did. We always tend to focus on the negatives when they are happening to us, especially when they are terrifying.

I didn’t realize how important blood flow was to vision. I mean it makes sense that it would be, but it wasn’t until I developed ‘thick blood’ that I realized just how important. Back before I saw Dr. B for the first time, I was having all sorts of visual disturbances, including the blind spot that had developed. I felt like I was in a fun house of visual effects. My vision was distorted, I couldn’t focus properly, and was blurry from time to time. I know now that this was likely because of the thickness of my blood and because of tiny clots passing through the veins.

I still think back to that first appointment with Dr. B often. Those words ‘You’ve had a stroke in your eye.’ often play through my mind. At the age of 29, the words ‘you’ve had a stroke’ are far from what you expect to hear, and ‘in your eye’ are even more distant. I went from having not seen an eye doctor since my school days, because I have always had perfect vision, to now I see a Retinal Specialist routinely. My appointments are long, I’m at his office for about 2 1/2 hours every time I go to his office. They do the vision field test, dilate my eyes, and prior to me even getting to see the doctor do a retinal image scan, take pictures of my eyes and then I get to see Dr. B. This next time I get to see him, he will have to do an extra step because I’m on Plaquenil and it requires monitoring for retinal damage. It can be done at the same time he is checking on the status of my Occlusion and making sure there has been no new events that have gone unnoticed to me.

That’s the scary thing, Retinal Vein Occlusions can happen without you being aware of them. Not all of them affect your vision as severely as the one I had. Some of them go unnoticed until detected by a doctor. That still unnerves me when I think about it. So I try not to think about it too much.

I haven’t seen Dr. B since January and I’m sort of looking forward to seeing him next week. It will be nice to talk to him and fill him in on everything that has happened since the last time I saw him. It’s quite a bit. I changed PCPs, acquired a Rheumatologist, was diagnosed with Lupus, started Imuran, my Plaquenil dosage was adjusted, my INR range was increased to 3-4. There were some other changes as well. Most of all, my anxiety level has significantly decreased. I also want to tell him thank you. He has been there almost from the beginning of this craziness. He is the ‘senior’ member of my medical team. If all goes well next Thursday  I probably won’t see him again until December. Since I’m on Plaquenil I should get checks every 6 months to make sure that medication isn’t causing damage to my Retinas. I still find it odd that I’m on medications that have to be monitored, and that could cause me harm, that I’m at a point in my life where the risk of the complications of the medications is outweighed by the benefits gained by taking them. It happens when you develop a couple of pesky autoimmune conditions though.

 

 

It’s like a Stroke In Your Eye

Branch Retinal Vein Occlusion, That’s a phrase I had to learn in October. It’s a fancy term that means a person has a blood clot in a small retinal vein. I know this, because I have one. It’s not that uncommon in elderly patients. The problem is it happened to me when I was 29. Let me tell you the story. I had been getting these dark blobs in my vision and they would resolve. I thought they were a form of migraine auras. Then one morning I woke up with a dark blob in my right eye that was shaped like a shark, only it never went away. When I saw the man who is now my Ophthalmologist he took one look in my eyes sat back, took a deep breath and said ‘You’ve had a stroke in your eye.’ I about fell out of the exam chair and Doug about fell out of the chair across the room from me. At least I had an answer. There was a spot in my vision that had gone gray. He said a whole lot of words after that but I only remember a few. He went on to tell me that I had a Branch Retinal Vein Occlusion and that they rarely happen in people my age. He then grabbed my hands and looked at my fingernails and said ‘Yep just as I suspected.’ At the time my fingernails were covered in splinter hemorrhages, tiny little blood clots under my fingernails. He asked me if I had a family history of Lupus and I said yes. He said to have my doctor to test me for that and more specifically Antiphospholipid Syndrome. That the splinter hemorrhages, branch retinal vein occlusion and my recent miscarriage were all signs of APS. He dictated my entire appointment onto a tape recorder. I was in tears because someone was finally able to give me an answer as to what was going on. A direction. Dr. B was the first one of my doctors that mentioned APS. He would later be the doctor that convinced my old PCP to place me on Plaquenil as well. He has been one of the most helpful members of my team to date. He is also the doctor that has been on my team the longest. In that first moment though, he gave me answers or at least a direction to look in. For the first time since the bizarre symptoms started I felt I’d at least find out what was happening to me before it took me.

Branch Retinal Vein Occlusions are killers of your eyesight. A funny thing happens when you lose part of your eyesight. Or at least it did to me.  My brain in trying to make sense of the newly formed blind spot in my right eye tried to put random images in that spot. So I’d be sitting talking to my loved ones and a random cat would pop into that area of my vision, out of no where. Logically I would know a cat didn’t belong there, but there it would be. The freakiest one was an image from girl scout camp, a place I haven’t been in 16 year. I thought I was going insane. Charles Bonnet Syndrome, is the official name for this phenomenon, which I learned after a few weeks of it going on. There is nothing more unnerving than sitting in a space and seeing a random image that you know doesn’t fit. Hallucinations because your brain is freaking out, is not a fun thing. The brain is pretty smart though, and that’s how it tries to compensate for the blind spot. Something else pretty amazing happened, my brain eventually stopped seeing the blind spot when I have both of my eyes open. That’s right as long as I have both eyes open I see mostly normally. That’s pretty cool. If I close my left I have a pretty significant blind spot hanging out in my lower not quite center right vision. It still sometimes looks like a shark, but mainly like a shimmering grey void. Not at all what I thought blindness would look like.

It’s made life interesting. I had to see Dr. B for monthly appointments until January. At that point my eye had healed enough and was  stable enough that he cleared me to go 6 months until my next appointment. I see him at the end of the month. A lot has happened since then. The last time I saw him we had classified me as Primary APS, now I have Lupus as well so that makes APS a secondary condition. My meds have changed. I have changed Hematologists (I was in the process of doing this when I saw him in January), PCPs, added a Rheumatologist and am adding a Dermatologist.

There’s a lot more to this part of my story, but it occurred to me I hadn’t really talked about my vision involvement yet and figured this was a good time to introduce it. I want to conclude on a positive note. I haven’t had a transient clotting event in my eyes in 4 months. My vision while I still have the blind spot, and some other lasting visual disturbances that I’ll go into later returned to 20/20 in both eyes. The clot  may have impaired my vision but it didn’t totally render me blind. I have that to be thankful for.