Normally, I try to be a glass half full type of guy. Let’s try and make the best of a bad situation. Let’s try to look at what’s happening and see if there is a silver lining to it.
I’m writing this to myself and giving you all the ability to look in and hopefully my situation might help someone else.
I think I am now up to 15 doctors and NPs who basically said there’s nothing we can do. The list is as follows:
Neuro Surgeon and his PA
Primary Care Doctor
Ear Nose and Throat doctor who then proceeded to move to the Atlanta area. I don’t think he moved because of me but…
4 PT, OT, RT
Another ENT doc
Infectious disease doc
Neuro Psych doc
Neuro doc with a specialty in headaches
And today, I get to add neuro ophthalmologist to the list.
Met with him in November, wanted to run a few tests and then give it 3 to 5 more months and check things out then to see what, if any difference was made. He thought that there was a chance we would see more good waiting. So we did.
An hour and a half of tests, pictures, looking in my eyes, making me try to read that which is unreadable (as opposed to “He who must not be named.” - 20 pts for the first correct identification of the author of that quote)
End result - “I’m sorry, I don’t know what you want but there’s really nothing I can do. Essentially what you have is a focus problem but its a variable focus problem and there’s nothing we can do for that.”
Is there anyone out there or anything out there that can help? “I keep up the latest trends pretty well and I don’t know of anything.”
Well, excuse me while I go kick a great big pile of cow manure at the docs car. (Not really)
So now I’m stuck in this never ending circle - I have a headache all.the.time. That headache makes my left ear internally much more noisy. The noise in the ear keeps me from hearing decently which creates more pain in my ears which makes the headaches worse which makes the eyes worse (repeat ad nausea)…
By lowering any of these, the odds are pretty good that some of the others will improve somewhat. But the only way I’ve been able to improve is by controlling the environment that I’m in. Don’t go to basketball games or rock concerts, etc.
In other words, don’t do the things that are common for middle class Americans.
Swell - anyone have a private island we could borrow? Or a nice House on 2000 acres out in the country?
Now lets step back and take a little bigger picture. My eyes basically act like they need like 3 or 4 or 5 different prescriptions over the course of a day. At some times, my normal glasses would work fine, at other times they wouldn’t. Do I try to find reader glasses that are stronger than my main prescription? And then switch to them if I need them to be stronger than my “normal” ones. And maybe find two or three levels of reading glasses that I would keep close that when the eyes go “funky” on me, Id have some options that might help. It wouldnt solve anything but if it took part of “time” and make it much less of an adjustment.
Another question/thought that’s actually two - it has to do with cutting down static. I’m talking all of the noise that I don’t need to hear outside of my head along with the noise inside my head. Is there anything that can be done with that? Normal hearing aids do well at making the quiet louder, but they don’t (at least in my view) do much in reducing the unwanted noise. To me, that noise is worse than the loss of certain parts of my hearing.
And related to that - its said that traumatic brain injury patients often find bright colors and a lot of moving pieces (I thought I was going to pass out the first time I went to the grocery store.) Yikes.
Is there anything out there in the visual field that would basically tone down the bright lights and the bright colors as a way to help reduce ear pain which reduces headaches which…
Glass is half empty - I cant do a lot of what I used to.
Glass is half full - I’m still here (and I say that with all seriousness) and while there might be a few minor things we can tweak, what I am is what I am
Unless one of us knows where or how to impact one or more of these issues, well…
Thanks for listening and thanks in advance for any input,