My ENT just got my radiology report. It says my Styloid
is 3.7 centimeters on the right and 4.0 centimeters on
the left. I had unsuccessful MVD surgery in December
2020 on the left for glossopharyngeal neuralgia. Now
I’m back on oxcarbazepine which gives me terrible side effects.
Next, I am to see a doctor at UCLA. This whole thing
has dragged on for more than 4 years to get to this
place. I hope something comes of it. Anything else I
should be doing?
I’m sorry you’ve suffered for so long. ES is hard to diagnose & many of our members have had other unsuccessful surgeries done trying to treat ES symptoms before they knew what caused the symptoms. I expect having your styloids removed will help resolve or at least reduce your glossopharyngeal neuralgia.
When you see the UCLA doctor, even if it’s someone on our list, make sure to ask these questions:
Will the surgery be external or intraoral (external is best)?
How much of the styloid will be removed (to the skull base is best)?
Will the stub of styloid that is left be smoothed off?
Will calcified stylohyoid ligaments be removed? (Sometimes there is a gap between the end of the elongated styloid & where the calcification starts on the s-h ligament(s). It’s important that both the elongated styloid & calcified ligaments are removed for best symptoms recovery).
Will the surgery be bilateral (i.e. both sides removed in one surgery) or unilateral (requires 2 surgeries for bilateral ES)?
Is surgery outpatient or does it require an overnight hospital stay?
Is a drain tube used to help w/ post op swelling or is Prednisone prescribed?
What is the expected recovery time? (The answer to this is based on opinion as there is no correct answer. Every person is different in how their body reacts to surgery. Some recovery quickly & others it takes more time & patience). Typically, it can take 6-12 months for the nerves that have been damaged or irritated by ES to recover.
I hope this helps & I hope your appointment is coming up soon.
Wow. Thanks for that great response. I’ll be sure to
take your list of questions in to the doctor. I’ll post
when I know more.
Glad it’s helpful for you! We will look forward to hearing about how your appointment goes.
I forgot one very important question -
How many ES surgeries has the doctor done (gives you an idea of level of experience)? More is better but an experienced skull based surgeon often operates in that area of the body so is qualified to do ES surgery.