I agree with the job intensity, Mark. It is tough to find the spot where you are doing enough but not too much. Not easy. And I haven't yet figured out (or accepted!) where the limit is. Lots of grieving goes on with this type of injury too. Takes a while to accept what we can no longer do.

What doctor would you see to get those types of tests?
Thanks,
M

Hi Eveerne -

I wanted to check in on everyone..... So thankful for all the interesting information you posted Mokey. I have a question in regard to sound sensitivity. When I am in a noisy environment, I feel like I become a bobble head doll. OR the person I am talking to is literally moving like a bobble head doll...... Noise makes me even more dizzy and off balance.... especially background noise at a restuarant or something like that. I am wondering if you all have that same response...... does it hurt your ears or do you get the bobble head effect? I was reading that this is called the Tullio Effect. Just to recap my symptoms, I always feel off balance/disequalibrium 24/7. I have light sensitivity to flourescent lighting and am dizzy. I have no headaches. In addition since the accident I have a constant fullness in my left ear.... constant for 8.5 months. Now I am also experiencing ear pain in that ear and can hear my heart-beat in that ear, cannot even hold up a phone to that ear because of the pain it will cause. Also when I leave places with background noise, my ear throbs for hours????? Do you have this too Mokey?? At any rate..... after reading about the Tullio Effect, I saw a Neuro-Otologist today. He thinks I may have a Perilymph Fistula in my left ear...... I am having a barrage of tests done Friday Ecog and a VEMP test. I guess this type of ear issue can also cause light sensitivity. Anyone else eventually see a neuro-otologist to see what in the Hellen is going on?

I still can'tgo to restaurants or coffee shops or kids activities. My brain crashes. I don't get a sore ear though...that sounds awful. I have a horrid sense of brain squeezing and then I hurt with headache for a day or two after. Other than that headaches have gotten better. But after being in a noisy place, my brain pays me back by churning and shattering all through the night. Hard to describe.
I would love to know who you saw for the neuro-otologist? Was it in MSP? Will be there for an appointment in a few weeks. Always looking for a doctor who know abut tbi!
Hang in there.
All of these things indicate cranial nerve damage (vision, tinnitus, vestibular, audiology, etc. )

I saw my ENT who is ordering the vestibular, inner ear and auditory tests.

He mentioned something called traumatic auditory-vestibular disorders after pcs. He also mentioned auditory processing issues in which the neuro-pathways around the brain stem can get damaged after mtbi.

The sound sensitivity and vestibular difficulties can only be stabilized by rebuilding and strengthening the neuro-pathways. But because we walked, heard and balanced before, the ability is there. He mentioned with various vestibular and auditory rehab it could take up to one year.

After the tests, I'll let you know what the doctors say. It seems that my visual, auditory, and vestibular systems/neuro-pathways will need to be stabilized, strengthened or rebuilt, and may take a year. Does this ring true for anyone else?

Sounds just like me! (ringing true....as in ringing in the ears
So wonderful that you have a doctor that understands. Do you know what tests have been ordered?

I am 19 months post accident...have seen some improvements but for me it is taking longer than a year.

The more i reseach the more i understand that this is all in the brainstem. Not to say that there are not some other deficits that I am dealing with, but the brain stem and cranial nerve damage is key. For people like us, we are LUCKY that the brain stem damage was limited. It could have been way worse. So blessed and cursed at the same time. And on we go! Good luck!!!!!

Thanks Mokey.

It's frightening how fragile and strong the brain is. At the time, I didn't think it was such a bad car accident.

Now I realize that if this much went wrong with me with the accident, it could have been so much more worse. I am grateful that it wasn't.

It looks like I will be 2 years off the tenure track and rat race of academia. It may prove hard to get back on, but it's my goal for now.

Seeing a Doctor Levine at the U of M ENT department. Mokey, are you coming in to see Rubenfeld? I proceeded with Levine on my own. I am still in the mild/moderate brain group at HCMC but I am just not seeing any improvement at this point ....NONE..... and that scares me to death. Do you both have the 24/7 off balance feeling when you walk? I got to thinking that with this constant fullness in my ear, and all my balance issues and the awful Tullio Effect I experience, I needed to look more into my ear issues. Mokey how old are your kiddos? Let me know what you find out Berkley Brain!!! I think we really have to take charge of our health during a nightmare like this. I am honestly considering seeing the guru of all dizziness/balance issues..... a Dr. Gianoli down South. I will see what happens after my battery of tests at U of M.