New - Lightheadedness with Spinal Stenosis

@juljul It sounds like you are on a path to a resolution. To answer your question about dizziness and vertigo, that was specifically related to when my C1 & C2 vertebrae were rotating independently, and working with my PT to straighten that out and realign the vertebrae corrected it completely, but temporarily until the next muscle spasm started things moving and rotating again. I have thoracic outlet syndrome which causes one side of my neck and shoulder muscles to be tighter which causes the rotation if those muscles are contracting more than the other side. Since my spine surgery fusion at C5/C6, the situation has calmed own and this doesn't happen anymore.

As far as imaging reports, I wouldn't expect this symptom to be listed. Reports are about physical findings that cause compression, and likely don't describe what happens if you move in a particular way. That is the job of the doctor to correlate your symptoms with the physical findings in the imaging.

I understand the anxiety. I went through it too, and when you don't know what the problem is and how it can be fixed, you start imagining that you'll be stuck like this forever. Just take it one day at a time. It helped me to write down my symptoms and how they changed over time. Even though I was scared, I had to advocate for myself going toward surgery. I had 5 surgeons refuse to help me over 2 years time as I was getting worse. I finally came to Mayo and got help there that changed my life. The other surgeons missed understanding the problem and my symptoms of having pain all over my body that confused them, and they didn't have confidence to do surgery. I went through 4 months of having panic attacks and I had to figure out how to deal with and deprogram that fear. That itself was life changing, and fear no longer controls me when I am faced with medical procedures.

You may be interested in this discussion about addressing fear.

Just Want to Talk - "How can I defeat my anxiety about medical tests and surgery?"
https://connect.mayoclinic.org/discussion/how-can-i-defeat-my-anxiety-about-medical-tests-and-surgery/
For me, the moments before a surgeon walks into the room to talk to me were some of the most intense moments because I didn't know what to expect, but this would be someone who most likely would propose surgery that scared me.

Do you have a routine to help yourself get through fearful situations?

That is an amazing story Jennifer. I’m glad you found someone to help at Mayo. Your fortitude is astounding. Three months into this and I was really struggling.

3 days ago my left leg started not working (floppy knee and foot) and the dizziness got so bad I blacked out. I called an ambulance and ended up on the ER.

To make a long story short I had emergency acdf surgery on C5 to C7 yesterday. Almost 24 hrs later and I feel relief of symptoms, though am cautious about the dizziness returning once I’m up and about more. The surgeon said full recovery and symptom relief may take a few weeks.
Having my post op discussion today and being discharged.

This was a wild journey. The neurologist and ed docs were pretty dismissive and thought I should be discharged for more pt since the cervical mri showed issues but none significant. A neurosurgeon showed up and figured everything out - a couple of different issues actually compounding each other.

@juljul You have quite a story too. I am glad you had a good neurosurgeon who figured it out. I am glad your symptoms are better. That feels great does it? What you're left with now is healing pain. Think positive. The dizziness may have been cured with your surgery. When you do get to have physical therapy, you can discuss the past dizziness and muscle spasms and have the PT assess this. Some patients who have thoracic outlet syndrome (which I have) can pass out if they turn their head. That doesn't happen to me, but TOS can be caused by a whiplash and is often missed by doctors unless they are trained in this condition. Undoubtedly, your surgery will cause enough inflammation that an assessment for TOS would have to wait.

For now, just be careful. You don't want to fall during your recovery and there may be dizziness related to having surgery. I think it's hard to be a patient when doctors keep missing the diagnosis. That happened to you too, and I'm sure you can write your own story about that. You've learned a valuable lesson too about advocating for yourself and how to connect to the details that were missed. I'm sorry you were dismissed. I got that too. We're both wiser now.