New - Lightheadedness with Spinal Stenosis
Hello - I am new here. I am a 53yo F.
Since Dec 27 2024 I have had lightheadedness/dizziness every day. It comes and goes. Starting in late January I also have tingling/numbness in my left foot and hand. In the last week I have diarrhea all the time.
Brain MRI, heart holter monitor/ekg, all bloodwork is clear.
Cervical spine mri shows the following:
"At C5-C6, a disc protrusion and facet arthropathy results in moderate
narrowing of the right neural foramen. No central canal narrowing is
seen.
At C6-C7, a disc protrusion and facet arthropathy results in moderate
central canal narrowing. The thecal sac measures 8.5 mm in AP
diameter. There is moderate narrowing of the bilateral neural foramen."
"FINDINGS:
The cervical vertebral body height and alignment is maintained. The
marrow signal is normal. There is degenerative disc disease at C5-6
and C6-7. There is retrolisthesis of C5 on C6. Reversal of the normal
cervical curvature is centered at C5-6. The cervical cord demonstrates normal size and signal intensity."
I have been PT for four weeks with little to no improvement. I have some clear times. Walking seems to help. Sitting makes it worse. Lying down seems to help.
I see a neuro surgeon in two weeks.
I am terrified I will wake up paralyzed or unable to breathe or something worse. Will this move slowly? Does anyone have any experience with this or solutions/treatments that have worked?
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@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.
Oh, boy, am I grateful I found this support group chat. I have been battling nerve pain and dizziness for over a decade and was told by multiple providers that it’s just my anxiety. The pain would come and go up until last year when it started with a vengeance in September and never went away. I’ve also suffered from vestibular migraine symptoms since 2021 that have lasted upwards of three months at times. I was told I just had migraine and that I needed to manage my stress for the numbness and tingling in my left arm and hand.
The ongoing pain in my left shoulder blade is the only thing that got me to see a spine doctor in early March this year. I’ve had four MRIs and four CTs with contrast, an EMG and nerve conduction test, a C7/T1 CESI, and six weeks of PT with little to no relief. My MRIs show congenital spinal stenosis (head to tailbone narrowing), degenerative disc disease in lumbar and cervical spine, C3/4 bulging, and a C6/7 tear that is leaking fluid.
The pain is awful, but it’s manageable. The dizziness and vertigo symptoms are not.
I’m getting a targeted C6/7 ESI on the 8th but am not super hopeful it will help me.
I’m typically not afraid of surgeries - I’ve had several big ones and know the drill. The issue with a disc replacement/laminoplasty is that I am a professional singer, actor, producer, and director. Neck surgeries that involve manipulating my larynx are a terrifying prospect for me. I haven’t had a full surgical plan work up yet because we are trying conservative measures first, which I appreciate, but given the failed attempts thus far, I am feeling more and more that surgery is inevitable.
I am contracted to perform in a show in late September, and it would crush my heart if that can’t happen.
Any help or testimony on the recovery and voice affects would be much appreciated.
You are having a hard time deciding on surgery, but your health always comes first and if surgery is necessary, get 2 opinions and go for it.
As you complain of left shoulder pain, have you also seen a cardiologist?
@qenbvp I certainly understand your concerns since you use your voice professionally. If you can, you may want to take this to Mayo. They have operated on professional singers successfully. For cervical surgery, it may be able to be done from the posterior which is more painful in recovery, but it would not manipulate your throat. I had anterior cervical surgery at Mayo, and my voice is fine, but there were a few days of hoarseness and a sore throat for about 3 weeks. I don't think I swallow as well as before this, because I don't think I have as much control on the side where the incision was. It's like one side of your throat forgets what to do with swallowing. My surgeon was Jeremy Fogelson and he would be a good one to consult at Mayo Rochester..