Hi Jules ,I’ve had my surgery 2 years ago and some…I know they can grow back …I’m afraid of that ,the pain is there every day . I barely get a break…How do you cope with pain ,do u take anything ? I have a hard time thinking I have to live like this …it’s depressing.
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There’s lots of info in the Newbies Guide about pain relief which members have found helpful to a point- anti-seizure and anti-depressant medications can help in low doses, and muscle relaxants can sometimes help, then either lidocaine patches or as injections into the area with steroids help. I take Amitriptyline for the nerve pain which helps a bit- most of the pain has gone with surgery though, thankfully, and mine wasn’t as bad as a lot of peoples, it was vascular symptoms which were worst for me.
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Hi Nikki,
My name is Trish, and crazy as it sounds I’m from PG as well! I was just diagnosed me with ES about a month ago. Have you heard of any other Dr’s in Canada who treat ES?
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I’m in Alberta and am waiting/looking for a Dr too… I was just referred to a skull base surgeon in Edmonton… the ENT I was initially referred to passed me on 
After waiting 3 months 
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Hi Trish!!! Sorry I haven’t been in here in so long …your from pg B.C? No way who your doctor? Mine is filatov in the first person to have such a surgery no doctor here had ever heard of it …where do u live?
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Hi nikki.k -
Did you ever go back to your surgeon to get a new CT scan to see if your styloids had regrown? People w/ regrowth often do a second round of ES surgery. It’s important for the surgeon to remove the styloids at the skull base so it’s totally gone & remove the stylohyoid ligaments to help prevent them from calcifying. You should check to see how much was removed the first time. If it wasn’t all taken out, then a re-do might be in order.
Hoping you’re doing better now than when you last posted.
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Hi …no i haven’t but am thinking of it just don’t wanna go through that again my ear was numb for a year .How are you feeling ?
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I had my first surgery in Nov 2014 & my second in Aug 2015. I still have a little numbness along my jaw line on the left & a bit of nerve pain in my jaw joint area (TMJ + trigeminal nerve) on the right. I also have first bite syndrome. The right side of my tongue was paralyzed for 9 mos. after my first surgery but is pretty normal now. That was a bit of a challenge though. The reminders I have left of ES surgery are not debilitating & are far better than the ES symptoms. I live with them happily.
Dr. Samji did my surgeries & fully removed my styloids & s-h ligaments. So far, I’ve had no symptoms of regrowth.
I’m very sorry you’re suffering w/ symptoms again! I hope you’re able to get that resolved soon.
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Awh thank you very much its very tiring living like this I feel like I can’t get on with my life …im glad you are feeling better and trigeminal is Awful ! Ill be going back definitely to see my ENT
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Im having major pain problems after external styloid removal. I had nerve damage droopy face for the first 4 months but before surgery minor ear ache now feels like an ice pick to the ear. If the dr.'s push on the back of my throat i’m crying for days. Wondering where your pain is how severe and whats the game plan
Hi, How are you doing? I am not sure how I missed your post. Did your issues resolve? @KaylaMinnesota
issues have not resolved infact have gotten worse
Kayla- so sorry that your symptoms have worsened…are there any medications which help you? Have you had a CT at all since surgery to see if there’s any regrowth?
Hugs to you (gently) …
KaylaMinnesota,
This post is going to sound like the inquisition…sorry!
Do/did you have bilateral ES? If so were both styloids removed to the skull base or just shortened? Did you have any stylohyoid ligament calcification? If so, were the s-h ligament(s) removed? If the styloid(s) were only shortened, &/or if you still have an elongated one in place, & if calcified ligament(s) were left in place, these could be contributing to your current pain. Did you an experienced ES surgeon do your surgery?
I’m hoping there is some recourse for you to help with your pain. As Jules mentioned, there are a number of medications which can help w/ intense nerve pain. They often take a few weeks to start working but can make a huge difference in quality of life.
I have a rare form of cancer i cannot take any kind of nerve pain medicine. I had elongated styloid one both sides had one side removed. The left. The CTs post surgery look excellent when reviewed by the top eagle syndrome dr at University of MN. He did not do my surgery. I did not know how rare and complicated this surgery was or i wouldve sought out this guy in the first place. I did not have this pain before surgery. I had a different condition affecying my eaustachian tube that originally brought me to my dr. The consensus is glossopharyngeal neuralgia. Still unknown if the said nerve was severed or if it has scar tissue built up around it. With the covid shut down its impossible to meet up with the care team at U of M. Hoping for some answers soon. The new plan of attack is internasal lidocaine. It is for migraines which i also get but could possible go beyond the nerve cluster its meant to treat to the pharengeal nerve. Praying for relief. Prescription was sent in today.
If i missed a question please re-ask it
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Ct looks great eagle syndrome ENT said the surgeon who did my surgery did a great job. Wrote a long post below better explaining
Thank you for your thorough response Kayla. I’m sorry you’re dealing with cancer as well & can’t use the medications that might be helpful in your situation. Have you considered having the other styloid removed? There are times when the remaining styloid causes crossover pain to the side where the styloid has been removed. I’m not insinuating that is true in your case just want you to be aware that can happen.
I hope the lidocaine nasal spray works wonders & knocks your ear pain out completely. I will pray for that. I hope you’re able to get in to see the doctor of your choice soon.
I’m glad your ES surgery appears to have been done well. That’s great news!
So sorry that you are dealing with cancer too…will pray that the lidocaine spray works, & that you can see the specialist team soon. 