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@jenniferhunter

@ahommer and Sue, you are asking great questions. I am jumping in here because a lot of the symptoms you are describing can be related to cervical spine issues and/or thoracic outlet syndrome (TOS). I have both of those and have had similar things happen before I had spine surgery. When muscle spasms pulled my spine out of alignment, I had vertigo (room spinning). Waking up with am arm asleep does happen with TOS. Pain in shoulder blades and pain between shoulder blades is a symptom of a cervical spine problem. TOS affects blood flow to the brain, and if you also have an upper cervical vertebrae that gets independently rotated, it stretches the vertebral artery that runs through it and reduces blood flow to the brain. TOS patients can pass out by turning their heads. That actually cuts off the flow of arterial blood and a seizure and fainting look pretty similar. Have you had neurological testing related to seizures? That would be a logical step if your doctor thought this was happening.

My doctor tested me for TOS by listening to my pulse in my neck, having me turn my head, and the pulse stops completely. The tightness of the neck which is usually greater on one side, affects jaw alignment, and in turn than compresses nerves that run to the face and jaw. I have had tingling in my face with this too.

Your physical therapist doesn't understand what is going on with your neck, and there is a risk that a PT can cause further damage if you have spine instability. It doesn't sound like any of your providers know what is wrong and continuing physical treatments can put you at risk without correct information. You referenced a chiropractic adjustment in 2019 causing pain from then onward. If you had instability in your spine, something like that can be dangerous.

Everything you said here strongly suggests a cervical spine problem with the possibility of TOS. TOS is most often missed and not understood by most doctors. You may want to consider an evaluation of your spine and testing for TOS, and you should do that at a muti-disciplinary medical center that also lists TOS as a condition they treat so you will be able to find specialists who understand it. Mayo is an excellent place for that if you are able to come.

Here is a link that may be of interest.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/
If you wish to request an appointment at Mayo Clinic, you may use this link to get started.
http://mayocl.in/1mtmR63
Have you been evaluated by a spine specialist before? Do you have imaging of your cervical spine such as an MRI or X-ray that may show a degenerative condition? (Note: I just saw your other post that was published while I was writing this response to you.)

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Replies to "@ahommer and Sue, you are asking great questions. I am jumping in here because a lot..."

Thank you! I have been have problems getting dizzy and feeling weird. I was sent to a seizure specialist for another issue that started one year after this issue. I swear they are all connected and even though they found some things I am told none of it is why I am doing so poorly. My friends want the happy active me back. I was a nut disc golfing 2 to 3 times a week at the gym 3 times a week, hiking when I could to now I can barely get up.