I am a 35 year old female diagnosed with Eagles Syndrome, an accidental finding investigating left sided ear aches. Underwent left external Styloid removal surgery on April 4th, 2019. Surgeon said “Surgery did not go well” having had 32 previous surgeries in other areas of the body I was shocked! Nurses kept looking at me sympathetically, having not seen my face in a mirror I didn’t know what was going on. Was finally informed my smile “may” return in 6 months give or take. He hit a nerve. He said he couldnt find my nerves. He repeated it didnt go well. Come home from surgery and after 3 days the pain set in. Ice pick to the ear. This pain is relentless bending standing pushing pulling makes it worse. Literally nothing makes it better. As I am writing this it has been 8 months and I am still on a high dose of daily narcotics. My quality of life living with a terminal cancer diagnosis is a confident 7. My quality of life from this debilitating pain is now a 3 at best. I need answers. Currently Doctoring at the University of Minnesota Medical Center after Rochester of Minnesota refused to take my case. I pray everyday for relief. As a side note my face did return to 90% functioning. Lip is still off to the left and lots of numbness in jaw near my ear which is likely permanent. Any one else having similar problems after surgery? After doing some research only thing I came up with is that my Cranial nerves are damaged and or pinched as a direct result of the surgery. Please help I can’t live like this insert tears
@KaylaMinnesota I am so so sorry to hear of all you have been through and are currently going through. That pain does sound so awful. I grimaced just reading it.
I will say you sound strong and like you are an overcomer and you can do this. You are doing this !
I wish I could be more help… Do you have all your medical records from surgery, dr visits, scans, etc? That would be the first step I’d think … you making copies and reviewing them even before giving them to new docs. Because you may be the only one who pours hours into the details of them and may find some clues into what’s going on & what the the best course of action may need to be. But of course giving those records to the right Dr would be important after you’ve tried to see what you can find in your own. I don’t have tips on which Drs but the right specialist is going to know exactly what might help. And there’s many here who might be able to provide some info.
Thank you for sharing your story. I’ll be praying you find some Relief very soon.
I am so sorry to hear that you’re in so much pain following surgery. It sounds like the doctor has perhaps stretched or caught a nerve during surgery- ususally these are monitored to check for any stress on them, but maybe he didn’t do this. The Glossopharyngeal nerve is in the same area, neuralgia from that typically causes stabbing pains in the ear, but there are other nerves to the ear which could cause pain. A positive is that your facial paralysis is improving- quite a few members have had that post surgery & it does usually improve. It can take nerves even up to a year to keep improving, so things may well get better, but it has been 9 months…
You say nothing helps- what medications have you tried? Gabapentin, Carbamazapine, Amitriptyline are nerve pain medications, have those been tried? I don’t know if nerve blocks are possible at all; Ben’s Friends do have a Facial Pain group & there’s people on there with much more specific info on nerve pain which might be helpful for you.
Do you have info on how much of the styloud was left? And did he smooth off the tip? Also did you have calcified ligaments, if they weren’t removed they could still cause pain? If you don’t have that info it could be worth getting another CT done; if there’s still alot of the styloid left it could be worth getting a revision surgery done with one of the very experienced doctors, but if alot’s been removed then it’s maybe more helpful to start looking for a good neurologist.
Either way, I’ll be praying for you, & sending you a gentle hug…
Hi KaylaMinnesota,
I’m so sad to read your story. Your ES surgery should have given you pain relief, not created pain. It sounds like the doctor you chose wasn’t very experienced w/ ES surgery (water under the bridge now). If he’s on our doctors’ list, will you please privately message me his name so I can remove it. As Jules said, the nerves should have been electronically monitored during an external surgery (this is not possible w/ intraoral surgery).
I really can’t add anything beyond what premedmom & Jules said, except that I’ll also pray for you to find a solution for your pain (nerve pain meds, as Jules suggested?) besides narcotic pain killers. How tough to add this to your already difficult situation.
My heart goes out to you.
Thank you so much for responding. All my records are viewable online. Sounds like we are on the right path so far with the doctors at U of M. I have experience with a rare diagnosis and being a self-advocate. Will not give up but I’m miserable
Thank you for reaching out. I am not sure of how much was resected or if they did any nerve monitoring. I’ve since had a CT at the U of M and they said my resection looked great. After surgery my surgeon said he had to spend 2 extra hours locating my nerves, he couldn’t find them. Said they are thinner than a dime and not where they’re suppose to be. By the time they were located it was to late. Idk if they’re being 100% revealing of what really happened in that operating room. As for the nerve medications yeah that would be ideal, unfortunately I have Carcinoid Syndrome and cannot have any sort of meds that can boost serotonin levels or be used to treat anxietty/depression. I realize my narcotic med does boost serotonin, but not the same lethal effect that the nerve meds would have. It has been to many months getting nervous that the nerve damage (whatever one they hit) may need to be repaired and won’t fix itself. I did try acupuncture right after surgery and it helped my face nerve regenerate faster but its an hour away when I’m already stacked with appointments. If you think of anything else please let me know thank you!
Thank you so much for reaching out. The responses to the previous mentioned should about sum it up lol. As for the Dr i haven’t checked the list. Prior to surgery it didn’t seem like that big of deal who did my surgery (i did a lot of reading and research) now I’m realising probably should’ve found a specialising doctor, but my ENT is very trusted very respected he’s the only one who didn’t dismiss my ear pain. Getting in touch with face/neck pain dr, getting a tube placed, having a swallow test, MRI and hoping for a nerve test. Trying to hang in there but on days like today where its a new pain patch and it isn’t touching the pain its disheartening to say the least. Spent most of my day in tears. Thank you so much to everyone for listening
It’s good to know the resection was done well. Still so sad about the nerve damage. Interesting about your nerves being so thin & displaced. I’m sure every patient presents a new challenge when doctors do surgeries. I also feel confident that your surgeon feels absolutely terrible about what happened in your case. Unfortunately, because we live in a lawsuit happy society, instead of being supportive when there is a surgical error, doctors often withdraw & refuse to work w/ the patient any further. This may be a self protection strategy so too much isn’t said in case a law suit is started. It’s unfortunate but understandable.
One member found lidocaine patches directly on the neck area where they had pain helped, I don’t know if there’s an area which you could try that with, maybe not if it’s nerves firing…
It’s good to know that the resection looks okay, so it sounds like a face/ neck pain doctor is a good bet to help.
I’ve tried that, straight lidocaine cream, medical cannabis ointments, ice packs, and heat packs. No relief. One thing i forgot to mention on here is that even after all of these months, the left side of the face, like cut it down the middle, is bruised under the skin. Hurts to touch it
Hi KaylaMinnesota,
I also have that bruise type of pain in the area around my right jaw joint. My first ES surgery was longer & more complicated than the second one, & I do have some permanent nerve damage in my face from it. For the most part, it only hurts if I press on it so it doesn’t bother me on a day to day basis. I am very thankful for that.