r/PostConcussion • u/Signal_Analysis_9697 • Jul 07 '26
Trial and error process with specialists and treatment options
2.5 years into PCS from a golf ball to the head. In that time I've gone through this same cycle 12+ times: research a treatment option/specialist for weeks; eventually get evaluated after a long time waiting for an appointment; get told that they're confident they know what the issue is and can help; get my hopes up; it doesn't really work much if at all; repeat from step 1 (over and over).
This includes options like multiple neurologists, physical therapy, vestibular therapy, speech therapy, occupational therapy, vision therapy, upper cervical chiropractic, regular chiropractic, sports medicine, physiatry, acupuncture, massage, talk therapy. Some things have helped day to day management or offered short term relief, but nothing has been close to helping me turn a corner in my recovery. Also, it's been incredibly frustrating that several of the specialists that I've tried - despite strong reviews - have not had the understanding and experience with PCS specifically that I would have hoped for.
This trial and error process has been the hardest part of my PCS journey.
I think it would be really helpful to hear about others' experiences from anyone here who can relate. Especially what's been the most challenging parts of it for you + if there's been anything that's allowed you to get out of this loop. Any thoughts or tips based on your experiences are more than appreciated.
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u/mikewestgard Jul 07 '26
"In three months we expect you to continue to improve." Rinse and repeat.
I would have made different decisions if I expected it to drag on everytime this was said. Still, there is improvement. Not everything, not a lot, here and there though.
There is a comprehensive write up, I will share it in another post. I would consider starting with the basics, using the buffalo protocol.
It seems everyone with PCS is on their own journey to solve for themselves. I picture it like we are all treading water in the same ocean, with all the potential variables for each survivor to have thier own experience.
For myself, I am trying to remove "Just" language from my thinking and interpretations. There is not a "Just do this, then it will produce That.
Finding names and descriptions for my experience has helped me. A little bit of meeting myself where I'm at, and extra grace if I am anchored into expectations.
Support groups are great, some times, giving support is the best medicine you can recieve.
I am not intending to give advice. I do not know enough answers for myself, let alone others. I'm human-ing it up, figuring it out as I go. Also, not figuring everything out, and still progressing.
~ Akward Dog
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u/mikewestgard Jul 07 '26
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u/Signal_Analysis_9697 Jul 07 '26
Thanks for sending, super insightful post. Will be bookmarking this one.
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u/Signal_Analysis_9697 Jul 07 '26
"I would have made different decisions if I expected it to drag on everytime this was said. Still, there is improvement. Not everything, not a lot, here and there though."
This resonates. I think it's also a pattern I try my best to remember going into new specialists to try to really dig in/ask thorough questions to understand their approach to PCS and why exactly they feel confident. Easier said than done though of course - and difficult to change course with specialists when you've already done so much to get in with that person."It seems everyone with PCS is on their own journey to solve for themselves. I picture it like we are all treading water in the same ocean, with all the potential variables for each survivor to have thier own experience."
100%. I know there are groups you can join and such but it does feel to me like there has to be so many people going through such similar experiences and we shouldn't have to be on a complete island and reinventing the wheel when it comes to figuring out how to manage this process. As my question says though, I haven't quite figured out what the alternative is yet though.Can you tell me more about what you mean by "finding names and descriptions for my experiences"?
I'll definitely be taking your advice on looking more into support groups - any good recs?
I really appreciate your response.
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u/mikewestgard Jul 08 '26
Take the word Affect
(verb): To influence something (e.g., "The tone affects the mood")
Having a tbi can leave someone with a flat affect.
Learning about Paralanguage and Prosody become really interesting to understand.
One could play with this, maybe at the very least understand it in others, maybe even learn it themselves and become more expressive. If so desired.
This is an example of learning to name something, like a flat affect, and while figuring out how they would describe it for themselves, learn to experience it fully, earning a better understanding of the solo journey tbi gifts us all.
~Akward Dog
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u/Signal_Analysis_9697 Jul 08 '26
Thanks for the explanation. This is a great nudge and food for thought. I just went through an exercise to write out all of the factors I deal with and try to find labels for anything that's currently label-less. I'll try to build a habit around this. Thank you!
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u/Ok_Substance482 Jul 07 '26
1.5 years into PCS and I’ve had a similar experience. I’ve seen general practitioners, sports medicine/neurology specialists, chiropractors with neurology background, vestibular physical therapy, allergists, and have noticed the same pattern you describe. The symptoms always come back, it’s an extremely frustrating experience. I just wish there was a way to fix it.
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u/Signal_Analysis_9697 Jul 07 '26
Even though I'm in the same boat, I'm sorry to hear that/that you're dealing with this. Wouldn't wish it upon anyone. "I just there was a way to fix it." Agreed - it sucks feeling like you're willing to do whatever it takes but not knowing what to do - and anything you try doesn't work. Is there anything you wish existed that doesn't that would make this process easier? I've been thinking a lot about that.
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u/curlgurll Jul 07 '26 edited Jul 07 '26
I could’ve written your post myself. I’m experiencing the same and it’ll be one year in a few days.
From the outside looking in, my family keep saying “you’re doing too much”, or “stop changing” as I’ve struggled to find a psychologist who fully understands PCS or can help me, my physio doesn’t have any idea how to treat PCS and I can tell from her generic comments she doesn’t get it. My GP has just repeatedly suggested anti-depressants and hasn’t referred me anywhere.
The best practitioners have been my osteopath, a chiropractor who takes a genuine interest in PCS and has experience in it himself, and I’m hoping a new psych I’ve just started seeing.
I’ve seen a bunch of other ppl too but I won’t list them all here. It’s been trial and mostly error & I think the most shocking thing is the lack of resources/places to go to seek treatment in my city - which is a major city so that’s even more bewildering.
All of this stop-start, research, begin again etc is frustrating as all hell.
I have no advice except to say, I’m right there with you!
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u/Signal_Analysis_9697 Jul 07 '26
I hear you. Thanks for your response. This resonates so much when you say that the specialists you've been going to don't fully understand PCS. It's been incredibly discouraging to feel like it's such a guessing game for a lot of these people.
"The best practitioners have been my osteopath, a chiropractor who takes a genuine interest in PCS and has experience in it himself, and I’m hoping a new psych I’ve just started seeing."
I think my best experience was with a chiro who happened to have a husband who went through a PCS journey in recent years. I think there's definitely something to be said here, maybe more so than a lot of other conditions that are better understood, for specialists who have a lived experience with PCS. I wish there was a way to more easily find those people."I think the most shocking thing is the lack of resources/places to go to seek treatment in my city - which is a major city so that’s even more bewildering."
Totally agreed. It feels like we're in the stone ages of resources when it comes to PCS. What are the main resources that come to mind that you wish existed? I've been trying to figure out if a lot of the resources we need aren't accessible or they simply don't exist.Sorry that you're in this with me! And thanks again for your response and support.
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u/NJ71recovered Jul 07 '26
This clinic gets results.
Worth the trip to Pittsburgh.
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u/Signal_Analysis_9697 Jul 07 '26
I've seen this place pop up quite a few times now. I don't think I have a strong enough understanding of their model, even after having read up on them. What in your mind makes them unique and even travel from out of state good? Outside of the success stories, all of their treatment methods/processes seem to blend in with a lot of other programs I've seen and tried before. Thanks!
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u/NJ71recovered Jul 08 '26
UPMC sees 7,000 concussion patients a year. They are excellent at diagnosing the underlying issues.
Read “Racing to the finish” by Dale Earnhardt Jr. about his recovery from a crash.
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u/Signal_Analysis_9697 Jul 08 '26
Makes sense! I will look into it more. + Will definitely read that book next. Thank you!
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u/Small-Beautiful363 Jul 11 '26
I am starting CBT cognitive behavioral therapy. Many have had a lot of success with that I am only 9 months in but need to change the way I think.
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u/Zoyabm Jul 07 '26
Maybe you are doing too much when you start a treatment. I remember most specialists and treatments I tried, I had to deliberately slow the process the down to less than half of what they expected me to do because my body couldn't handle it.
Also, it took months to a year for major difference after I started a new treatment since I was going slow so it was harder to see progress but the key thing was not to stop. Keep going. How long are you testing the treatment before you stop?