Who is the Dr. House for vision issues?
May 3, 2021 11:06 AM   Subscribe

My neighbor has not been able to get a DX for central vision loss and she is seeking a neuro-opthamologist and eye institute for further insight, possible treatment.

She particularly wants to know if she can travel internationally to see grandchildren without risking her remaining vision.

The problem is described as "ganglion cell degeneration"
She has been told "this is not glaucoma"
Her ocular pressure is lower than average.
I call it VITING (Vision Issue That Is Not Glaucoma)

She has Erlers-Danlos, and arthritis. Her joints are very fragile.
Her lymphocitic colitis has been controlled by an inhaled steroid, Budesonide 3mg, for 15 years.
Her general health, BP, BG, nutritional status and bloodwork all seem to be good.

She has lost color vision, mostly in the left eye.
Blue-Green is a bit shaky in the right eye.
Her central field loss is making reading very difficult and she says the words "don't stay in place."
(I think this is called "visual stress" and we will address that when we tackle coping technology - reading equipment, etc. But she does not want to work on that until the more pressing issues (DX and Can I see my darling grandchildren?) are dealt with first.

Ask Mefi - Do you have experience with atypical or hard to diagnose vision issues? Where are the the sage minds to be consulted on this?

Can you recommend an eye institute working on regenerative therapies (stem cells, proton?)

Do you know of any online forums or support groups for atypical vision issues? I will also hook her up with low vision support.

My very sincere thanks.
posted by egk to Health & Fitness (11 answers total)
Important question: where does she live?
posted by yclipse at 11:12 AM on May 3, 2021 [1 favorite]

Depending on location, the Johns Hopkins Wilmer Eye Institute. If this is too far, look for a major academic hospital.
posted by maxg94 at 11:57 AM on May 3, 2021

If you are in the midwestern US, Michigan's Kellogg Eye Center does a bunch of great work. I only went there for basic eye care (I seem to have escaped various family eye issues, thankfully). But they do more complicated care too, e.g. resources including cone dystrophy.
posted by nat at 12:00 PM on May 3, 2021

I came here also to recommend Kellogg - they are world class - based in Ann Arbor. Really depends where she is in terms of what will make the most sense.
posted by leslies at 12:19 PM on May 3, 2021

Response by poster: Tennessee and she has seen doctors at Vanderbilt.
posted by egk at 12:19 PM on May 3, 2021

I have bad eye issues and live in Nashville and was referred to Dr. Wallace at Tennessee Retina more than a decade ago. I've been very happy with the practice. They have satellite offices around the Nashville area. PM me if you have questions about my experience there or at the Vanderbilt Eye Institute.
posted by zoetrope at 12:56 PM on May 3, 2021

I had terrible headaches that my regular ophthalmologist couldn’t figure out and Duke Eye Care in Raleigh/Durham, NC was able to diagnose me with the rare pigment dispersion syndrome and treat me. This is where the pigment falls off the iris and blocks ducts, causing intraocular pressure to rise. Doing great 15 years later with just latanoprost drops. I would recommend them. Not too bad a trip from Tennessee.
posted by freecellwizard at 3:34 PM on May 3, 2021

Best answer: Another place to consider, which is world class in terms of eyes, is Wills Eye Hospital, in Philadelphia, PA.
posted by gudrun at 5:22 PM on May 3, 2021 [1 favorite]

My ophthalmologist and retina-vitreous surgeon were not much help in assessing the level of vision I was left with, how big/severe my blind spots were, whether there was any hope of resolving my double vision, and things like that. My regular ophthalmologist ended up referring me to a “vision therapist” (also a MD).

Most of his patients were kids with lazy eye or reading disabilities, but he was also able to map out my blind spots and determine the cause and prognosis for the double vision. (He also tried some therapies to improve things, but the fact that none of them worked helped in his evaluation.) I saw him every week for a few months.
posted by The Underpants Monster at 12:29 AM on May 4, 2021 [1 favorite]

Hamilton Eye Institute in Memphis used to have at least one neuro-ophthalmologist on faculty, and still lists neuro-ophthalmology as a practice specialty. Vanderbilt, which you mentioned you'd been to, also lists neuro-ophthalmology as a practice specialty. Hope this helps.
posted by junebug at 5:58 AM on May 5, 2021

Response by poster: Update
She's still not got a formal diagnosis, but has been told that she has Retinal Pigment Epithelial mottling. if you know of specialists in that area, she is still interested in a second opinion.

Also turning her attention to rehab/coping and she is looking for a vision therapist.

Thank you for all the suggestions
posted by egk at 3:17 PM on May 10, 2021

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