I was so relieved to find this group!
Sorry this is so long - I admit to just wanting to get it out of my head.
I found out about ES due to worsening vertigo - it started about 15 years ago.
It’s been getting worse exponentially until, after an intense project at work where I was at my computer 14-18 hours most days for 3 months, it got so bad I couldn’t work anymore and went on short term leave.
In addition to the vertigo, I’ve had a problem with the left side of my neck for about 25 years. If I put my neck in the wrong position, I sort of black out - I get what feels like an electric zap, black out, and come to shaking and crying. This only happened a few times before I figured out not to put my neck in that position (basically if I lay on my left side, it can happen). I had my tonsils out when I was about 5.
- Pain on left side of neck
- Severe pain behind my jaw in front of my ear
- pain under my chin on the left
- Pain in front of left shoulder (pec minor area)
- Trouble swallowing if I’m laying on my back
- Swallowing increases with neck discomfort
- Pitch of my voice lowers if I lay on my back, and as my muscles relax
- Trouble yawning - I just can’t anymore
- Drooping of left eye lid that improves with nervous system regulation
- Feeling of Fluid in left ear
- Feeling of fullness in left ear
- Symptoms triggered by stress, certain neck movements and shoulder movements
- Vagus nerve stimulation improves symptoms
- Symptoms increase when left side of neck is compressed
- Balance issues
- Eye tracking issues
- Vision problems - my eyes are no longer consistent
- Bruise very easily and the bruises last a long time.
- Random increase in pulse rate
- Lately, walking long enough to run errands or have a normal day brings on an ice pick stabbing in the back of my neck, followed by SCM spasm, pain in my ear, tingling around the left side of my head, my left eyelid will twitch, and then vertigo
- A massage to relax my shoulder and neck muscles will make my left arm tingle and then my left fingers will go numb (pinkie and left ring finger, although my palm will tingle as well) and then of course everything tightens up a few hours later and I get vertigo
- I wake up every hour or so at night for no apparent reason
- I think I’ve lost half my IQ. I can’t focus at all and it gets worse and worse every day.
Here are my official diagnoses:
• ADD (attention deficit disorder)
• Insomnia, unspecified
• History of PCOS
• Rotator cuff tendonitis, right
• Labile hypertension
• Mixed hyperlipidemia
• Cerebrovascular disease
• Neck muscle spasm
• Generalized hyperreflexia
• Vertebrobasilar dolichoectasia
• Vertebrobasilar migraine without cephalgia: probable (Chronic)
• Vertebrobasilar insufficiency: kinking in specific position
• Raynaud’s phenomenon
• Opsoclonus saccades
I had some imaging done, here are the results:
There is mild reversal of the upper cervical lordotic curvature. Inflammatory endplate change at C3-4. No loss of vertebral body height. The craniocervical junction is normal. No abnormal T2 signal within the cervical cord. There is dolichoectasia of the left vertebral artery flow void at the C2-3 level.
- Ventral cord flattening and mild central spinal canal stenosis at C4-5 and C5-6.
- Multilevel foraminal stenosis which is moderate on the right at C6-7 and on the left at C5-6. Mild to moderate bilaterally at C4-5 and on the left at C6-7.
- Inflammatory endplate change at C3-4 which may represent a cause of axial pain.
- Dolichoectasia of the left vertebral artery at the C2-3 level.
Posterior circulation: The left vertebral artery is dominant. There is dolichoectasia of the left vertebral artery at the C2-3 level. Diminutive right vertebral artery which tapers distal to the posterior inferior cerebellar artery. There is tortuosity at the vertebrobasilar junction. No focal stenosis of the basilar artery. There is a common origin of the superior cerebellar and posterior cerebral arteries. No focal stenosis.
Anterior circulation: No focal stenosis of the internal carotid arteries. There is a hairpin loop of the right internal carotid artery at the C2 level with dolichoectasia and close proximity of the styloid process. There is a hairpin loop of the left internal carotid artery at the C2 level with close proximity of the left styloid process.
Hypoplastic left A1 segment. No focal stenosis of the middle cerebral or anterior cerebral arteries.
- Hairpin loop of the right internal carotid artery with dolichoectasia. Hairpin loop of the left internal carotid artery. The styloid processes are elongated and in close proximity with the internal carotid artery loops. Correlate clinically for Eagle syndrome.
- Dolichoectasia of the left vertebral artery.
3D Imaging -
- Hairpin loop and dolichoectasia of the right internal carotid artery. Hairpin loop of the left internal carotid artery. Elongated styloid processes are in close proximity to the internal carotid artery bilaterally. Correlate clinically for Eagle syndrome.
- Dolichoectasia of the upper cervical left vertebral artery.
- No focal stenosis of the common or internal carotid arteries
And this is how I got to ES. The radiologist was supposed to do a different kind of test, but didn’t seem to understand what was being asked.
I don’t know what any of that means. I’m scared, I’ve been googling like crazy when my eyes can focus. No one has reviewed my images with me or explained anything more than that I have some weird anatomy.
How much of the above is linked to ES?
When I look at the 3D images, it looks like surgery might be kinda dangerous due to the weird loops I have.