Vision Neurooptho/Psych + 100 other things
 

Hey everyone again,

Was glad to find this forum and after receiving good information on my last post I thought I would throw out a few questions that I have been trying to sort out myself.


Hx is that I was T-boned waiting at an intersection, did not hit my head rather was thrown around, felt like I had been concussed about an hour later, initially thought it was adrenaline, but after a few hours I realised that the drunk/euphoric/amnesia stuff was more than just that. I have suffered multiple concussions, 1 major and now looking back at least 4 others from hockey.

I have had what I have finally come to admit as major psych issues with anxiety and at some times what I would call depression as well as for at least 2 months almost OCD behaviour. I have gotten a handle on most of this stuff, mostly through working with psychologist, and finally coming to terms with the fact it is there.



My other symptoms were headache, Vision problems nausea initially that passed after a few weeks although I still have transient bouts with it. Cognitive difficulties with speech slurring, memory short and long term, major confusion, concentration issues. Most of these have resolved to somewhat manageable.
Sorry for the long history this mostly sums up the problems I think so my questions.

I have had vision problems and what has been Diagnosed as Mild Convergence Insufficiency / Disphoria? I am not even sure what the difference is if there is one, my problem is I have a hard time verbalising and describing how this effects me, its always there, sometimes more sometimes less, but I am wondering how all of you got your point across to your opthamologists??

I was essentially told, since your not complaining of double vision its not our issue. I have a request to see another Neuro-opthom months from now.

I also have a Neuropsych assesment pending, which I am excited for, I want to know what deficits if any do exsist. However without a baseline how will they know? Is there anything you guys wish you had brought up or prepared for?

I also have neck injuries from the accident for which I am seeing a physio, he has been great, Xray revealed that the neck is mildly curved from the spasm, could this possibly have an effect on my eyes?

Lastly, how do you guys get it across that yes your symptoms get worse, and better and worse again sometimes within the same week?, I feel like the Docs sometimes look at me cross eyed when improvement halts and I fall back a little.

Thanks for your time in reading all these questions and the long history, hopefully it all makes sense.

Regarding a NeuroPsych Assessment, You do not need a baseline to get a valid report. Baseline testing is for Computerized NeuroCognitive Testing system like ImPACT, CNS Vital Signs or BrainMinder.

Anxiety and depression issues are common to PCS. The concussed brain struggles to process stimulation so it become anxiety ridden easily. It also tend to get stuck on the same thoughts so this adds to anxiety.

You are confusing dysphoria with diplopia. Diplopia is the medical term for Convergence Insufficiency. Getting a neuro-ophthalmologist exam will be good. An functional or behavioral optometrist may also help.

Keep in mind that the physio can start the process with your neck but you need to be disciplined with posture, especially when resting or sleeping and inflammation reducing (icing) for any therapies to be long term beneficial.

My best to you.

You can check out http://www.braininjuries.org or http://www.nora.cc for additional practitioners who might be able to help with your vision issues.

As Mark said, you don't need a baseline for the neuro-psych. Your test results will be compared to non-brain injured people of similar age and educational background.

As you're having issues with speech/language, you might want to request an examination with a Speech Language Pathologist. I found this helpful.

Like you, I struggled to articulate my symptoms. Do you have a friend or family member who could advocate for you at medical appointments?

"If you're not complaining, it can't be a problem," is not a good criteria for accessing a TBI patient. Any doctor following that protocol does not understand brain injury. Very often patients are oblivious to obvious deficits and difficulties. That's part of the injury. I'm glad that you're going to have a neuro-psych.

I have considered bringing my wife with me to appointments to advocate on my behalf, Its funny along with some days not being able to have a conversation very well, its also just the describing what is happening. When I say "nothing looks like it should" "Things dont move like they used to" "sometimes movement makes me sicks, sometimes not" most people look at me with the look I am sure a lot of you are used to, the blank stare or the raised eyebrow Some Drs opthos included. Its at those times I just kind of give up. Its a battle.

If you are not communicating well, it is important to have someone with you who is able to express your issues. I suggest you have that person, your wife would be best, practice by telling somebody about your struggles. If she can express your issues to a family member or friend first, she will do better in the pressure of the doctors office. She can also mention the changes she sees. There will be things she see that you are not as aware of.

And, Do not try to minimize or mitigate your struggles. "This does not happen all the time but ....." is a good way to tell the doctor to disregard this issue. Tell the doctor about your symptoms and let the doctor ask how often it happens.

My neuropsychologist actually insisted that a family member be present for my pre and post test interviews.

She assumed, rightly, that I would not be as aware of some of my symptoms as my husband was (I had no idea I repeated myself, constantly, or engaged is repetitive behaviors) and that I wouldn't be able to remember what she told me.

She also said it was important for my spouse to hear my post test evaluation, from her, so he could have greater insight into my struggles.

So, by all means, take your wife. It will be good - for both of you.

I also second Mark on not minimizing your symptoms. This is very common with TBI patients.