I had surgery on 8/16 with Dr. Hackman (bilateral elongated styloid - removed w/ preservation of bilateral carotid vessels, hypoglossal nerves and facial nerves). I’m now being told that due to the surgery I could have Geniculate Neuralgia in my left ear. Has anyone else had this issue?
I’m really sorry you’re having this problem after ES surgery. I hope you’ve found a successful way to reduce symptoms. Nerve pain meds are likely the go to for symptom relief.
I typed geniculate neuralgia in the search box & there are several threads that include some discussion about it. I didn’t have time to read any of them, but it might be helpful if you can.
Thank you. I was reading some yesterday. My left ear never hurt like this until after my surgery. They think it’s a complication of the surgery. I’ve been on Gabapentin for some time now but it isn’t helping. My ENT has put me on Topamax too but it isn’t helping.
I am thankful for my ES surgery but I wasn’t aware my ears would be cut until an hour before the surgery. That wasn’t the original plan because my right ear has a history of cholesteatoma and we decided we increased the risk of complications by cutting my ears. Now I’m being told I have either geniculate neuralgia or vestibular migraines because of the surgery. My left ear has hurt since I woke up from surgery. It just breaks my heart.
So sorry that you’re suffering from this after surgery, it’s very rare, so very unlucky for you…there are other nerve pain medications which might help you, sometimes it can be a matter of trying a few different ones to find one that works. Have you seen a neurologist?
Ben’s Friends also have a Facial pain group, it might be worth having a look at to see about meds there, I don’t know if anyone on there has Geniculate Neuralgia, but you can have a read if you have time… Here’s a link:
Living With Facial Pain - Support Community for Facial Pain Diseases - Trigeminal Neuralgia (TN) and Glossopharyngeal Neuralgia (GPN)
Sending you a hug, & thinking of you
How heartbreaking for you. I wonder if the not cutting around your ears detail somehow got left out of the pre-op notes. It’s no good when a bombshell gets dropped on you just prior to surgery as you don’t really have much time to react to protect yourself.
Here are names of some other nerve pain meds that have helped other members - amitriptyline (Elavil), carbamazepine (Tegretol), pregabalin (Lyrica) & duloxetine (Cymbalta). Each of these has a slightly different approach to pain reduction so if one doesn’t work, trying another is a good idea. Another issue is the dose you’re taking. Most doctors start with a low dose & gradually increase it to a level where it’s effective. This allows the body to gradually get used to the medication which helps reduce side effects. If your dose of gabapentin is still low, you might ask your doctor about increasing it otherwise, ask about trying a different medication.
Visiting the facial pain group is also a great suggestion from Jules.
I hope you’re able to find something that helps you a lot!