macular degeneration, macular, diagnosis Zigzags – My Macular Degeneration Journey/Journal

Zigzags

Hi. I have done as much as I can do on that report. The scoring manual for one of the tests is in the office. Plan ahead, Sue! I am still not used to not having everything in the hatch of the car.

Before grabbing an evening snack, I will get started on my GuideMe, well, guide. The second paragraph of the welcome already begs comment. To quote: “the intent is to simulate as accurately as possible a post-diagnostic consultation with a doctor or therapist.”

Now my local ophthalmologist is very competent and a sweetheart and Regillo is scary smart and accomplished but there was never, ever mention of actually teaching me a damn thing! Not really. What I know Lin and I dug up on our own.

Lin has found that to be true with most of our subscribers and group members. We are the closest things we have to AMD educators. We are doing it for each other. Where did these people find medical professionals to do ‘post-diagnostic consultations’?!?! I want to know.

End of rant. However, for future reference, AMD educators are a great idea. Somebody should actually do it.

Moving on to the visual symptoms link of GuideMe, I am thrilled to say I don’t have the waves. I have gotten seasick in a kayak on a sheltered cove. I do not need waves in my vision!

I also don’t have a totally blank space in the center of my vision. Maybe it is closure and being done by my brain and not my eyes, but some things ‘bleed’ through. What my hope is is there will be enough live photoreceptors left to let me fill in that hole should I ever get the RPE stem cells. Do I know the divot that is my geographic atrophy is getting a bit large? Yep, but a girl can hope. Things aren’t totally gone there….yet.

Photopsia was a term I had never heard of. My mother had them with migraines and just called them the zigzags. According to Wikipedia – you know I always go for the most erudite source?- photopsia is the presence of perceived flashes of light. They are not only associated with migraines but also with posterior vitreous detachment (PVDs), retinal break or detachment, occipital lobe infarction, and sensory deprivation. Migraines, by the by, can be with or without pain.

Speaking to the migraines first, I had a couple of incidents of  what I thought were migraines  with no pain but photopsia the other week when I was stressed. Since my mother had zigzags I just assumed migraine.  I did mention them to my general practitioner but now I am thinking I should also give a holler to my ophthalmologist. I would suggest you do the same should you ever see flashes or zigzags.

Why? Well, GuideMe says a retinal detachment is a ‘shower of sparks’ but I personally would not want to be standing around trying to figure out if it satisfied criteria while MY retina detached. Also, looking at that list above, I see posterior vitreous detachment which can have some symptoms similar to retinal detachment (don’t make the call of what it is yourself). Also with a really good tug, posterior retinal detachment could potentially lead to a macular hole. And with all that good news, I imagine you really don’t want to be reminded an occipital lobe infarction is a brain bleed in your sight center; do you? Didn’t think so. Not thinking many of us spend time in sensory deprivation tanks so I won’t address that one.

That is it for that section. I am going to email the good doctor and then go to bed.

Remember, I am probably not typical (have never been?) and your eyes are not required to be like mine. I tell you what is happening with me only as one example of what might be expected.  I have been told it can be normalizing….or not!?

Night!

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