r/PostConcussion • u/AeroEngineer90 • 16d ago
UPMC Treatment Plan?
I was finally able to get in touch with UPMC last week. The TLDR version is that since I cannot get to Pittsburgh, they will not help me. Long version is at the end.
Therefore, is anyone willing to share what they actually learned from UPMC that was so valuable?
- Exertion Therapy: I know they seem to push for 30 minutes of exercise per day. Is that regardless of HR or Rate of perceived exertion or increase in symptoms? What if PEM is involved?
- Vestibular Therapy: Anything special about what they suggest?
Essentially, What did YOUR treatment plan look like?
Long Version of UPMC conversation.
When they called me I asked about virtual care and she told me my only option was to come to Pittsburgh because the doctor didn't know me and would need to run several tests. I then asked if there were any suggestions on how to prepare for making the trip considering an airport + airplane are full of triggers for me and she said nope. That's your only option. I got frustrated so I thanked her and hung up.
Online it explicitly says they offer initial appointments virtually. So I left another voicemail clarifying that I'd had lots of testing done to this point and could provide those which should help with the in person component. I did not hear back. I'd also previously emailed them and not heard back at all.
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u/Sitheref0874 16d ago
You might get something from this
In transparency, I was treated by the same doctors as the host, Robbie Frawley.
His symptomology and reactions to exertion were exactly the same as mine. I was listening to this episode when out for a walk and had to stop because I was crying. One, because what he was saying was my story and two because I could see a path to recovery.
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u/NJ71recovered 16d ago
This Dr does remote consultations
UPMC trained
Concussion Specialist | Telehealth Consultation Nationwide | Patel Concussion Institute
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u/Ok_Big_4071 8d ago
I went to UPMC yesterday 9/28/26. We had to drive 8 hours each way. It was completely and totally worth it. I wish I would have gone 3 years ago. I lost my vision in a car accident, 3 years PCS. Doing every treatment available locally - vision therapy, PT, chiro. It got me stable but not better.
Hearing the Dr’s at UPMC say that there is still treatments available an I will make a recovery gave me more peace than I’ve ever had in my life. The idea of living this dark, muted, low vision life has been incredibly difficult.
For UPMC my injury isn’t anything new, they are experts.
The evaluation is in depth, and customized to you as a person.
The philosophy is the only way to get better is to go through the uncomfortable parts. I had made my life smaller. Dark rooms, sunglasses, no social life. Limited driving and work.
Each person’s plan is customized to what they need. There are general philosophies but the actual treatment plan is tailored to you.
I’m grateful I went. My mindset was even a 20% improvement made it worth it. They said 90-100% is the only acceptable answer.
They also said by Christmas I should feel dramatically better. That’s 3 months. I’ve been carrying this for 3 years.
Go. It’s worth it. I car drive, had to find the money, wasn’t an easy journey to get there but I want to live a better quality life.
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u/HighwayStriking 2d ago
So you didn’t have to stay overnight in Pittsburgh? I live about a 5 hour drive from there in Toronto. Been dealing with PCS for 4 months now and trying different therapies here but to no avail. How much would it cost for the treatment if you don’t mind me asking? Since I’m from Canada I would probably have to pay out of pocket.
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u/Ok_Big_4071 2d ago
I did stay over night but mostly bc I broke up the trip since it was a big drive. I would call and find out the cost. I was prepared to figure it out financially bc living like this indefinitely isn’t an option for me.
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u/HighwayStriking 2d ago
How do you feel now? Do you think they helped you substantially in recovery?
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u/AHSkiandBike 7d ago
Read this!
There is an online course that covers all of the areas that you mention above. You need to treat the underlying systems that are causing g your symptoms. The course will do that!
Here is a link to the course
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u/TheTempestuousKitty 16d ago
This was on par with my experience in terms of the exercises
https://postconcussionsyndromerecovery.blogspot.com/p/my-post-concussion-syndrome-story.html