Well, made it all the way to the appointment stage, which apparently is the end..
Referrals, months worth of medical records and tests submitted, a couple update emails I wrote explaining everything, ect. Nobody else can figure out why my peripheral vision is out of focus and deteriorating, so they were kind of the last hope.
Called today to get an update, hopeful for an appointment, and the ophthalmology department said "yes, he looked at all your work and read everything, and there is nothing we can do". .....??
Soooo, that's it?
I guess to be fair, all the ophthalmologists that I have seen have submitted a ton of tests and thoughts, so we have covered a lot of ground and possibilities.
I just had the assumption that, whatever all these specialists came up with, Mayo had even more. Or maybe a team of doctors that discussed the situation and tried to come up with ideas, instead of one dude flipping through the paperwork and saying it's hopeless and turning me down.
On the other hand, I'm thankful they are honest apparently, instead of inviting me up there to get money.
Anyway, the reason for this post, was to get some opinions on this. Should I try to push it a bit more and see if they will try to look deeper into it? Or if they say there is nothing they can do, is that usually just the end of the road with them?
How frustrating, but I guess it just shows that even Mayo doesn't have answer to every issue. If it were me, I would ask them who they feel is the preeminent eye specialist I could possibly contact based on what they have seen in your tests.
Here are some other major medical centers known for eye care: Massachusetts Eye & Ear Infirmary, Cleveland Clinic, University of Iowa Hospitals and Clinics, Johns Hopkins...
There are two other possibilities -
Go to this group on Connect https://connect.mayoclinic.org/group/eye-conditions/ and post a new discussion. Give it a title that is descriptive of the problem you have. Describe your symptoms and maybe share a little info about what has been ruled out as well. I'm guessing you will be able to find someone with a similar or related issue.
The other suggestion, if you haven't already tried - there is a group called the Phillips Eye Institute in Minneapolis. Many people I know have consulted them for highly complex eye issues. https://account.allinahealth.org/carenow/options
Have you asked your local docs for recommendations?
Sue