I should probably update my blog

Since a lot happened.

I went to the University of Buffalo concussion clinic. I did a bunch of tests, like walking on an inclined treadmill with a bunch of people watching me and my heart rate and commenting that it was really high which made it even higher and basically gave me an anxiety attack of heart rate self-consciousness, and pointed laser lights attached to my head at dots on the wall with my eyes closed, and a few other things. I learned:

  • I have a neck injury (knew that) that may be contributing to a bulk of my post concussion symptoms (suspected that, but not to the extent the Buffalo experts believe.)
  • I passed all the balance tests, meaning nothing is majorly wrong with my inner ear vestibular system (pretty much knew that).
  • I failed the vision vestibular / ocular motor tests, meaning something is wrong with how my brain is processing images, which could also explain a lot of symptoms, like Target Intolerance ™ eye twitching, blurry vision and brain fog. This could be from my neck, my brain or a combination thereof.
  • I passed the treadmill test! Meaning I don’t have what the clinic considers physiologic post concussion syndrome, meaning it’s okay to get my heart rate up, meaning I can work out!
  • I still shouldn’t run or lift weights in their opinion, maybe after 6-8 more weeks of neck PT and when I can do cardio on the bike without it exacerbating my symptoms too much.

It all feels still kind of untrue, like yesterday I did 30 minutes on the recumbent bike in a normal aerobic heart rate, like 150s, and I felt like I was getting away with something illegal, like I shoplifted. I’ve had so many false starts and stops, it’s hard to believe it’s still not “bad” and going to hurt my recovery. I did get a little dizzy that night, but Buffalo docs say it’s okay, and it’s from my neck + vision and I should work out anyway. It’s confusing because that’s so different from what other docs have said but at this point I don’t actually have a doctor who can tell me ANYTHING anyway. I have no real guidance about what the best thing to do is, so I’m going to trust the docs at Buffalo and do what they recommend. They are the experts on piecing apart post concussion syndrome and seeing what comes from what, so people know what treatments to pursue.

photo

Almost…getting…mildly…warm

They told me to go to vestibular therapy, and during the consult the therapist found I passed all the balance stuff fine, but badly failed something called a binocular vision test. I was seeing double when I shouldn’t have been. My brain may be working overtime to put images together (convergence ) which could totally explain a lot about how I feel although I’m not sure why it gets worse after exercise, maybe because I’m taxing my body’s ability to sense where it is in space because it’s also connected to my neck proprioceptors. It’s all kind of complex and confusing and doctors don’t even understand it.

Now I have to go to a special optometrist called a behavioral or developmental optometrist to do vision therapy to fix my vision issue. Supposedly they can help it. I hope so. It’s scary to think something like that got messed up in my brain from the accident.

But I’m happy to have some answers and a plan. Now I just have to go forward and do it. Much better than doing nothing and waiting, yet not knowing what I was waiting for…

3 Comments

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3 Responses to I should probably update my blog

  1. James

    This is great, Jackie! I’m glad you’ve got some answers and it’s cool to see your experience of all that at U of B. I will be cheering you on as the rest of us concussion folks go through similar things! Keep at that plan and keep moving forward! You can do it

  2. Glad to hear things are sounding up- although I’m sure still very frustrating! Best of luck healing!

  3. Yeah, that’s great. Keep going with your plan. In the end things will mend

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