I would appreciate some thoughts on this.
I have to say I am a unique case, perhaps just like all TBIs, on several aspects including the fact that I have severe visual sensitivity to convergence and tracking as well as screen light that I will describe in a later post and could be illuminating to some. Paradoxically, closing one eye with a patch has not helped (I have my theory about that).

But after 4 years of suffering and 2 years out of work (since my second concussion) my main treating doctors, who have been very friendly until now, are getting a cold feet when I asked them for a disability letter. My work is going to separate me in few months, and I will obviously be without income unless my doctors write a strong letter that I am most likely permanently disabled.

Both doctors my neuro-ophtalomologist and sports medicine doctor, both specializing in concussion, went from telling me early on things like "unfortunately in some people this damage is permanent" to now telling me things like "I don't understand." The first went on from offering me several times to write a letter, to now telling me that "it won't help you and besides disability is extremely boring."
The second just told me that TBI does not cause permanent disability, and is trying to explain to me that this only happens in people who have a tendency for depression and anxiety prior to their concussion. He wants to speak to my psychiatrist (I am fine with that). The same doctor told me a while back about patients with worst symptoms than I have, who can't leave their room. Three years ago when I asked him, will I recover? He said "I have seen people who recovered".

These are my doctors, they have seen me through the years, they now are seeing how I am going to experimental therapies and desperately trying different therapies and drugs.

I wonder: Even if they end up writing the letter, my work is going to have me evaluated by an outside doctor on a yearly basis, fine by me. But if that is the attitude of my doctors, I can only imagine what will be the attitude/opinion of an outsider. At any point in time it seems I am likely to end up in some type of separation and lawsuit. My work is very understanding usually, they are trusting, but if doctors can't help who can....

I left the doctor's office today completely depressed and lost. The meeting ended so badly. His manners changed.

I am left contemplating the option of pretending to work as long as they keep me. I might get away with it in a bureaucracy but this will be a terrible thing for me to do to them and to myself. But if the alternative is to get kicked out without disability or after being on disability just because some doctor did not believe me. The stress that I have to live with for the next 15 years that one day my pension will end and I won't feel better...

Now I am very dizzy and have to lay down. I appreciate any thoughts.

Your post is too rambling for me to address the main issues of your future. But, I can address one issue. Your sports doctor is NOT a concussion expert. He may be a concussion specialist but that does not make him an expert. Many suffer permanent disability from a concussion/TBI. The idea 'this only happens with people with preconcussion anxiety and depression is incorrect. The correct concept is that concussed people who suffered from anxiety and depression prior to their concussion have a much higher likelihood of prolonged symptoms. That does not mean that everybody who suffers prolonged PCS had an anxiety and depression condition that causes their PCS.

Do you have access to any other doctors besides these two?
The sports med doctor's ideas deserve a second opinion.

Where are you? Maybe some searching can find another doctor within your travel area.

Thanks as always Mark. I am in DC, and I have seen many doctors over the years. It is just that my work expect me to get disability letters from the doctors that have been seeing me on a regular basis.
I agree with your opinion related to him and what he stated.
Since my main problem keeping me from work is visual, my neuro-ophtalmologist's letter will be crucial. Hopefully he will write it.

Maybe they will give it to me, after some drama. But I wonder, if every year I will be evaluated by an outside doctor chosen by work, how would that even work? You cannot measure nausea, dizziness, sensitivity to light and convergence, tracking,...

I am just afraid to have to deal with this stress for the rest of my life.

Have you ever had a Visual Evoked Potential test? It is similar to an EEG except you look at a TV screen. There is also an Auditory Evoked Potential with sounds. They both look at how the brain processes visual or auditory stimuli.

A qEEG also includes these tests.

Usually, once you are awarded disability status, the employer usually is indemnified and the insurance company takes over.

Here are some clinics that do qEEG assessments.

Google BrainScope

Concussion | Neurology Center Main

QEEG - Brain Wellness and Biofeedback Center

Here are some other testing methods:

Quantitative measurement of post-concussion syndrome Using Electrovestibulography | Scientific Reports

More articles to read:

EEG Findings in Traumatic Brain Injury – qEEGsupport.com

bach,

I just thought of something. I take 100 mgs of 5-HTP every morning to help my brain. I have forgotten to take my morning dose a few times. When I do, I am miserable. I play ping pong 3 days a week. Without my 5-HTP dose, I can't play ping pong. The balls appear to be flying at me too fast. It is very upsetting. I wonder if you could try some 5-HTP to see if it makes a difference.

If you are taking an SSRI, you need to go slow with 5-HTP. Maybe 50 mgs for a week to see how you tolerate it. If you start sweating easily, stop. If not, trying upping to 100 mgs.

Your brain needs 5-HTP and your body produces it for your brain. For some, the brain needs more.

I also take L-Theanine (200 mgs).

I am much better on 100 mgs of 5-HTP and 200 mgs of L-Theanine that I ever was on an SSRI, paroxetine.

Thanks much Mark.

- Regarding insurance: My employer does this in-house. Either way, they will want to evaluate me yearly by sending me to one of their doctors. Thus the worry, because it is easy not to believe me, since even my own doctors are showing skepticism. So I am very worried to be kicked out of the disability retirement plan by suspicious doctors. I have seen many doctors who were skeptic.

- Regarding 5-htp I will look into it, thanks much for letting me know.

I am hitting rock bottom psychologically, so thanks for the support.

and I forgot to respond to Evoked potential test:

- I was going to take it, but looked at the screen, and I know from my experience this can set me back many months. I also immediately got extremely dizzy and nausea, couldn't do it...

I know, my case sounds crazy.

The Evoked Potential test sounds like it would be a good indicator of an organic injury. I suggest you push through it and deal with the symptoms. You do want evidence of an organic injury. You can't fake it so the results need to be considered seriously.

I don't believe you when you say it could set you back months. It may wipe you out for a week or two. I've been through that. You are not improving so what are you afraid of.

"Hey doc. I want to prove to you that my symptoms are real but I will not do any tests that cause my symptoms to manifest."
Explain how that fits with any research methods.

I was not aware that EVP would actually give objective data. I asked a friend to do some research on it and see how long I will be looking at the screen and where I can do it.


I understand that is hard to believe me at first. I finally posted my story focusing on my preplexing vision issues:
My story: my wrecked vision post concussion


I definitely need hard evidence, so far I only have:

- EEG brain mapping test showing abnormalities, but frankly this did not seem as a standard scientific test. I have no seen it anywhere else. The person who runs the office is a psychologist. But I am doing neuro-feedback there.

- tests done by optometrists specializing in vision and TBI. I had done two computer test that showed problems with tracking.

- Convergence test through prisms that my ophtalmologist uses.

The qEEG brain mapping should have included VEP and AEP. Maybe the psychologist does not know how to read the test. The doc who did mine could look at the wave form and tell me what my symptoms are. But, my doctor did qEEG mapping research.

Yes, VEP, AEP and such are entirely objective tests.

Maybe researching qEEG testers in your area would help you find somebody who is a better test reader. Look at my previous post.

Here is an interesting research article about VEP and diagnosing concussion caused convergence insufficiency:
Visually Evoked Potential Markers of Concussion History in Patients with Convergence Insufficiency