I feel like I have this.
(TL;DR - Sidney Crosby was treated for a concussion, but it turned out to be more of a neck issue causing "sensory mismatch”).

Where do I start to seek treatment for this?
How is this even treated?

Last year I was going to physical therapy for my neck due to a car accident. I feel it helped treat the symptoms but really didn’t treat the underlying issue. When I asked the orthopedist about my nausea/ ill head feeling after physical therapy, he said it wasn’t related to the neck.
Other than my complaints, he had no objective evidence that there was an issue with my neck. He did take an X-ray.
Now that I think about it…he never once put his hands on me during any of the exams.

Maybe look into a DO/osteopath--
What is a DO?
Also advanced/experienced PT can do assessment/evaluation
Or a knowledgeable & skilled DC/chiropractor (also consider one to check upper cervical c1/c2 alignment)

Trigger points in the neck /upper back muscles can cause some odd referred pain/symptoms.. more info can be found online.

QWERTY,

Orthos rarely know about how a subtle neck injury can impact the brain and neurological functions. They are broken bone and torn ligament repair specialists.

The subtle neck injuries will rarely show on imaging unless the images are analyzed by an upper neck specialist. A upper cervical chiro may help. A gentle neck PT can help. Range of motion is usually too aggressive. Gentle traction and mobilization can help. Some osteopaths have good upper neck skills.

The challenge is finding the right specialist. The ortho will not have a good referral. I bet the PT was having you do range of motion that improved your head turn ROM below C-2 but stressed C-1 to occiput or C-1 to C-2.

With gentle therapy, you need to add disciplined sleep posture and limited other stresses on your neck. Icing can help. Inflammation within the neck it the concern. It puts pressure on nerves and blood vessels in the brain stem.

Sleep with your head and neck in a straight position. I learned this from sleeping in a recliner and waking up better than from bed. If you sleep on your side, your pillow should be thick. If you sleep on your back, your pillow should be thin. You may want to curl the sides up so you head does not roll to either side.

Experiment with sleeping and pillow positions. Proper quality sleep is also extremely important. If you wake up drowsy, that was not quality sleep, no matter how long you slept. If you feel sleepy during the day, you are not getting quality sleep.

It took me two years of occasional PT and good sleep discipline before I had a stable neck.

Mark do you have any suggestions for finding a gentle PT?

Most PTs will focus on range of motion and look for increases in range of motion at each visit. They might overdo any head and neck traction efforts. A gentle PT will focus on gentle traction and mobilization and look for the source of muscle tension and maybe treat it with myofacial release or trigger point therapy. The goal is two fold. Reduce the muscle tension and allow the neck to settle into a stable and balance position because there is no muscle tension pulling it one way or the other so inflammation can go down.

Reducing inflammation is a priority. Warmth encourages blood flow and may cause muscles to relax. Cold reduces inflammation. Warm may be used before and during a treatment and cold after. That is how it was done with me. I would be sent home to ice.

I too have often wondered if I have a neck injury contributing to my PCS.

I had gone to chiro in the first 3 months of injury, but after one visit gave me a huge setback to square one (very likely a reconcussion), I will never visit another one. I've had sacral cranium massage with some relief. I guess what I'm wondering is
- left alone, will these type of neck injuries heal over time?
- what are the key words to use when visiting a physio, or massage therapist so that they focus on the trouble spot?

thanks

The chiro did not cause reconcussion. He was more likely too aggressive with your neck and the strain from an adjustment caused an increase in inflammation that increased symptoms. I tell people to avoid the 'twist the head and pop the neck' adjustments. They may work for C-3 and below but put too much strain on C-1 and C-2.

Cranial Sacral Therapy can help if it is directed at the spine. The cranial plate work is highly suspect. Helping the neck settle down can be a big improvement.

Self-treating requires discipline to limit fast head and neck movement so the neck is not stressed.

"Self-treating requires discipline to limit fast head and neck movement so the neck is not stressed."

Mark, what about the exercises that are done in vestibular therapy? Are those likely to cause more inflammation? There is a lot of head turning during those sessions.

I know that I cannot tolerate that much head turning. Back in the early years, I had to be careful when we went sightseeing in the back roads of Idaho. I had to be careful when I went into the back yard to clean up after the dogs. I learned to turn at the shoulders. If you did your vestibular therapy turning at your shoulders, it would be easier on your neck.