I first contacted Dr. Ryan Osborne in LA and while he confirmed the Eagle’s Syndrome diagnosis, he wasn’t contracted with Medicare and I didn’t have $30,000 for the operation. He suggested I look for a University Hospital. A Scripps ENT, Dr. Brendan Gaylis, examined me and said it is either C1 or the Styloid process but because of the lack of experience, referred me to Dr. Theresa Guo, Head and Neck Surgery, UCSD.
Insurance: Medicare and Blue Shield supplemental.
Symptoms: Transient alteration of awareness, Insomnia, Constant level 7 neck pain with occasional spikes to 10 upon turning my head to the right; Tinnitus-6khz at 85dbls with a background pulsating drone of 50hz 60dbls 360 pulses per minute; confusion, problems thinking; pre-syncope and syncope; balance problems, falling to the right.
Diagnosis: Compression of the neural structures and focal narrowing of the internal jugular vein in the area of the styloid process; Eagle’s Syndrome.
Findings:Right Styloid Process and C1 Transverse Process noted to be in close proximity. Styloid process shortened by 2.5 cm.
Pathology of the right styloid: Benign bone and cartilage. Bone marrow with trilineage hematopoiesis.
2 1/2 weeks post surgical: Never needed pain meds. Swelling is almost gone. All symptoms are gone except for the tinnitus. Dr. said I would experience Bell’s Palsy type symptoms for 2-3 months due to CN12 being involved and the right side of my mouth doesn’t work right. The area around the jaw and incision is numb. I was hoping that when I came out of anesthesia, it would be quiet. But at least I can turn my head without experiencing severe pain strong enough to buckle my knees.
1st post surgical appointment, June 2nd.
I’m so glad you found a doctor who was able to help you w/ IJV compression being caused by your styloid & C1. We have several doctors on our list who specialize in styloidectomies w/ vascular decompression which sometimes requires that a bit of the transverse process is shaved off of C1 to give the IJV as much room as possible to expand. It sounds like this was unnecessary for you. It’s great to hear that you’re already experiencing some good symptoms resolution & had such a small amount of post op pain.
Please be aware that symptoms can come & go & come & go over the next 6-12 months as nerves & vascular tissues can be slow to fully recover. Just know we’re here for you to ask questions & receive assurance if that happens.
CN12 is the hypoglossal nerve (affects tongue movement) which isn’t often disturbed during ES surgery. CN7 is the facial nerve which is more often irritated during ES surgeries. A lower lip droop is the most common side effect, but some people also experience dysfunction of the eyelid on the same side. It can take 2+ months for recovery as your doctor told you.
Facial & neck numbness post op are also common after ES surgery. You can do gentle finger tip massage (using something like Bio Oil or vitamin E oil on your fingers to prevent friction when massaging), or use a very soft cloth, or even a feather, to gently stroke the numb areas. Injured nerves do best w/ a very gentle touch to help wake them back up.
I will add Dr. Guo to our Doctors List since it seems you’ve had a good outcome so far. Please stay in touch to let us know how your recovery is going.
I’m really pleased for you that your surgery has helped, that’s great to hear! Did you have the styloid removed only, or a C1 shave as well? Take it easy & I second the advice @Isaiah_40_31 has given you about recovery!