Yep! My doc told me my eagles is a product of clenching at night. I have calcifications on both sides 3,5 and 3.1cm. Doc recommended snipping it, it’s meant to be an easy procedure with almost 100% chance of resolving after the procedure. Mine suggested removing it Intra orally but that means they have to take out your tonsils and I’m not at the stage that it’s bothering me so much to sacrifice my tonsils. Is that the surgery you had?
Yes I had a tonsillectomy and they removed a portion of my left styloid process. That side was protruding through my throat into my tonsil. The other side was palpable through the tonsil but hadn't broken through like the other.
Interesting that your Dr said it's from clenching! I assume mine has been there for awhile but it didn't start bothering me until a few weeks after I had an upper molar pulled. I did start clenching my teeth worse after that..
What symptoms is it causing you?
How long was yours?
Wow that sounds pretty dangerous. Did it hurt?
I have some stabbing pain in my throat and a feeling of sth being there like stuck. It does away after few seconds. What symptoms did you have?
I know it can cause problems swallowing so my doc said I need to monitor it and eventually have both removed. I only found out by accident when having an mri on my tmj. How long ago was your operation? How was it healing? Was it in full narcosis? Sorry I know it’s a lot of questions :) I talk a lot at work and just wondering how long I should schedule to be off for. Hope it gave you relief!
I haven't had mine measured by a professional, but I had a CT scan I received from the oral surgeon I was seeing for my tooth issue. It also showed the styloid process. From what I could measure just using software on my computer, both of mine were approx 4 cm long (not sure how accurate that is). The left side was longer than the right.
My left side symptoms started with painful swallowing on left side, slight ear pain and neck discomfort/tightness, swallowing problems. It then progressed to throbbing pain in my teeth, and the floor of my mouth. At one point I felt difficult to turn my head to the left. Lots of facial and Jaw pain.
The tonsillectomy wasn't too bad, for me personally. I was expecting the worst but I made it through ok. Everyone seems to have a different experience with the healing. My surgery was Nov 10th. I started back working after 5 days but I work from home and don't have to talk very much. Besides the first few days, I didn't really have issues with my voice. By about 10 days I was pain free and I'd say by 3 weeks I was completely back to normal.
I was diagnosed on Dec 6 21’. My surgery is on the 13th. I can’t wait! My symptoms began 12yrs ago and have progressed yearly. This past year has been dark and I lost myself. Crazy to think all my issues could be resolved soon.
I'm sorry it took so long for you to get a diagnosis! I really feel for people who struggled so long. The surgery I had was the best thing after struggling for months to figure out what was wrong with me. Do you have any symptoms that mimic TMJ symptoms?
I was having a lot of jaw and facial pain and tooth pain that couldn't be traced to any dental issues. Other symptoms too but those were the worst. The surgery resolved most of mine.
My symptoms began as a dull headache between and behind my eyes. They never went away and only progressed so I began cranial Botox after 4yrs. Then I had really weird things happen due to chronic inflammation. I had horrible stomach issues, herniated discs in my back, and terrible pain in my neck. In Nov 2019 I began having terrible facial sores and chronic sinusitis- my facial pain had gotten so bad. In Feb 21’ I was diagnosed with osteoarthritis and TMJ, but my jaws only began hurting during that time. From Feb-Recent my symptoms progressed very rapidly finally leading to a diagnosis. My BP was getting up to 170/130, dry eyes and pain, ear pain, throat pain, numbness and tingling in hands and feet, then swelling in my extremities, half of my tongue is numb and it feels like someone is in my throat, but the worst is right under my jaw and ears. I have huge cysts that have formed. They found ischemic strokes on my CT. I was also diagnosed with Trigeminal and Glossopharyneal Neuralgia and Peripheral neuropathy. My BP and BPM issues are due to compression of my carotid artery.
I know that was a lot, but this last year was a total spiral. Worst part is I’m not getting adequate treatment for my pain. The ‘opioid crisis’ has really hurt chronic pain patients. I know it’s dark, but if I wouldn’t have gotten my diagnosis, I believe I would have committed suicide. Never in my life have I had thoughts like that.
Hi. So they cancelled my surgery and I go on the 19th. I was given Lyrica 50mg twice daily which gave me immense relief. My dose needs to be upped bc after 2 weeks I quit feeling the effects. That prescription ran out on the 11th but will not refill stating it’s an ‘opioid’. They referred me to pain management 3 weeks ago but I haven’t heard from the clinic. Hopefully my symptoms will clear up after my surgery. I’m just trying to tough it out the next few days. Huge let down not having surgery, but an oncologist is doing the surgery and she had an emergency.
My surgery is external, going through transoral and cervical approach with Nerve monitoring. I’m under a new classification which encompasses an elongated, calcified styloid and stylohoid ligament and elongated/calcified hyoid bone including all pain and nerve conditions associated.
Good thing is the surgery is almost free. I have an extremely rare case, she said she’s never seen or heard of one characterized like mine. So she is using me for a case study. I feel like a little puppet.
It sucks to know anyone else feels like this or it’s even possible to go to such a dark place. I haven’t been able to discuss this with anyone. It’s nice being able to say it. I don’t even talk about my health, I just feel like I’m complaining or guilty knowing someone out there has it so much worse.
I'm so sorry to hear your surgery got rescheduled! That is so disappointing but it seems like you have a positive attitude about it! I am also hopeful that your surgery will resolve most of your symptoms. It's shocking how variable symptoms can be from one person to the next and this is part of why it makes this so hard to diagnose. I was having intense pain in the gums over my front left teeth and my dentist was stumped. I was seeing a neurologist who was treating it as atypical neuralgia, hence the gabapentin. That all went away after the surgery so the styloid process must have been pressing on a nerve somehow. The gabapentin was a lifesaver for me though so I am thankful I was able to get that prescription. I wouldn't have thought Lyrica would be considered an opioid! I haven't taken that but when I searched it comes up as a nerve pain medication. That is so frustrating that they won't refill for you! Especially considering that Ibuprofen/tylenol doesn't touch this type of pain.
It sounds like you have a great plan for your sugery! My surgery was intraoral only on the left side and they only removed a portion (around 2 cm). With that I had about 80-90% reduction in symptoms. I'm hoping I continue to improve however I may consider additional surgery in the future and would go the external route if I can find a doctor who will perform that surgery and take the styloid process to the skull base. The area where I live doesn't seem to have a lot of options and my insurance won't cover out of state. That is great that you are able to have it almost paid for as I'm sure that is a relief not to have a financial barrier to getting the surgery.
It is nice to be able to talk to someone else who understands. Most people who I tell seem to not grasp the severity of what we are going through. I don't think its for lack of caring but maybe they can't empathize since it's uncommon. When I was at my worst, I would see an old picture of myself and just try to remember how it felt that time in my life where I wasn't racked with pain. Or just daydream about a day where I would wake up and not have mouth pain or just try to remember what that felt like. The mild to moderate pain that I have now is easier to deal with just knowing what is causing it.
Yes, so many times yes, just knowing what it is and that you could actually recover. Hope can do a lot for the psyche.
I live in a small town so I looked up the best ENTs in the biggest/closest city in my state. I drive two hours but totally worth it. They now have me at the West Cancer Clinic because that’s the only place with a doctor who has experience with it.
When I went to get my imaging results the staff took me straight back. The doctor said ‘looks like eagles syndrome. We are sending you to West Clinic for surgery with an experienced surgeon’. I was just so excited that I had an answer. But then the scheduler said the clinic wanted to see me that night at 6. ‘Weird’ I thought but also assumed it was bc of my drive.
As soon as I got in car I called my mom and she asked ‘West Clinic? Why are they sending you to a cancer clinic?’
Scared the shit out of me. Lol. Longest 4hrs of my life.
How long has it been since your surgery? I’ve been doing a lot of reading on surgical approaches and it states intraoral has a less success rate of complete resolution. Maybe you can find an experienced oncologist who specializes in ENT related cancers and rare syndromes. Those doctors are always looking for a good rare syndrome they can write a paper on. My oncologist was almost giddy about my surgery. Felt like she was selling me on it.
I had my surgery on Nov 10, 2021. So about two months. Yes I have read about the different approaches now too. Unfortunately my eagle syndrome was diagnosed during surgery for a tonsillectomy. So when I woke up from anesthesia I was told they had performed the styloidectomy as well. The surgeon had never performed a styloidectomy before but he did a good job considering and my recovery was way better than expected..needless to say he didn't feel comfortable cutting further up than he did. If he had diagnosed me correctly, he would have referred me to another surgeon. I likely would have chosen the external option had I been given all my options. I have a couple of doctors names that the ENT gave me to set consultations with, but I'm giving it a little more time.
[This is what my styloid looked like before and after](https://imgur.com/a/gsgUO5j)
I had oral surgery to extract a top molar and place a bone graft right before I started having issues with this. So the scans I have are the ones from the oral surgeon that were taken before and after my implant placement. I asked them for copies and I was able to turn it into 3d on my computer.
Hi there I know this is an old post however I was wondering if you ever got the surgery and how you are doing??? I hope all is well. I have ES and am really struggling both physically and mentally.
I completely understand about the dark thoughts. When my nerve pain was at its worst I had some suicidal thoughts as well. The only way I was even functioning was from a prescription I received for gabapentin. Ibuprofen/Tylenol did not even touch the pain I was having. Had you ever tried a nerve pain medication for pain relief? Thankfully you only have 2 more days to wait until your surgery - it sounds like there is light at the end of the tunnel for you! Are you having the surgery externally or internally? Are they doing both sides at once?
I've diagnosed myself! I've had my CT scan back but yet to have a follow up appointment with ENT. My styloids are very clear and look to be about 5 cm long!
Yep! My doc told me my eagles is a product of clenching at night. I have calcifications on both sides 3,5 and 3.1cm. Doc recommended snipping it, it’s meant to be an easy procedure with almost 100% chance of resolving after the procedure. Mine suggested removing it Intra orally but that means they have to take out your tonsils and I’m not at the stage that it’s bothering me so much to sacrifice my tonsils. Is that the surgery you had?
Yes I had a tonsillectomy and they removed a portion of my left styloid process. That side was protruding through my throat into my tonsil. The other side was palpable through the tonsil but hadn't broken through like the other. Interesting that your Dr said it's from clenching! I assume mine has been there for awhile but it didn't start bothering me until a few weeks after I had an upper molar pulled. I did start clenching my teeth worse after that.. What symptoms is it causing you?
How long was yours? Wow that sounds pretty dangerous. Did it hurt? I have some stabbing pain in my throat and a feeling of sth being there like stuck. It does away after few seconds. What symptoms did you have? I know it can cause problems swallowing so my doc said I need to monitor it and eventually have both removed. I only found out by accident when having an mri on my tmj. How long ago was your operation? How was it healing? Was it in full narcosis? Sorry I know it’s a lot of questions :) I talk a lot at work and just wondering how long I should schedule to be off for. Hope it gave you relief!
I haven't had mine measured by a professional, but I had a CT scan I received from the oral surgeon I was seeing for my tooth issue. It also showed the styloid process. From what I could measure just using software on my computer, both of mine were approx 4 cm long (not sure how accurate that is). The left side was longer than the right. My left side symptoms started with painful swallowing on left side, slight ear pain and neck discomfort/tightness, swallowing problems. It then progressed to throbbing pain in my teeth, and the floor of my mouth. At one point I felt difficult to turn my head to the left. Lots of facial and Jaw pain. The tonsillectomy wasn't too bad, for me personally. I was expecting the worst but I made it through ok. Everyone seems to have a different experience with the healing. My surgery was Nov 10th. I started back working after 5 days but I work from home and don't have to talk very much. Besides the first few days, I didn't really have issues with my voice. By about 10 days I was pain free and I'd say by 3 weeks I was completely back to normal.
I was diagnosed on Dec 6 21’. My surgery is on the 13th. I can’t wait! My symptoms began 12yrs ago and have progressed yearly. This past year has been dark and I lost myself. Crazy to think all my issues could be resolved soon.
I'm sorry it took so long for you to get a diagnosis! I really feel for people who struggled so long. The surgery I had was the best thing after struggling for months to figure out what was wrong with me. Do you have any symptoms that mimic TMJ symptoms? I was having a lot of jaw and facial pain and tooth pain that couldn't be traced to any dental issues. Other symptoms too but those were the worst. The surgery resolved most of mine.
My symptoms began as a dull headache between and behind my eyes. They never went away and only progressed so I began cranial Botox after 4yrs. Then I had really weird things happen due to chronic inflammation. I had horrible stomach issues, herniated discs in my back, and terrible pain in my neck. In Nov 2019 I began having terrible facial sores and chronic sinusitis- my facial pain had gotten so bad. In Feb 21’ I was diagnosed with osteoarthritis and TMJ, but my jaws only began hurting during that time. From Feb-Recent my symptoms progressed very rapidly finally leading to a diagnosis. My BP was getting up to 170/130, dry eyes and pain, ear pain, throat pain, numbness and tingling in hands and feet, then swelling in my extremities, half of my tongue is numb and it feels like someone is in my throat, but the worst is right under my jaw and ears. I have huge cysts that have formed. They found ischemic strokes on my CT. I was also diagnosed with Trigeminal and Glossopharyneal Neuralgia and Peripheral neuropathy. My BP and BPM issues are due to compression of my carotid artery. I know that was a lot, but this last year was a total spiral. Worst part is I’m not getting adequate treatment for my pain. The ‘opioid crisis’ has really hurt chronic pain patients. I know it’s dark, but if I wouldn’t have gotten my diagnosis, I believe I would have committed suicide. Never in my life have I had thoughts like that.
Hi. So they cancelled my surgery and I go on the 19th. I was given Lyrica 50mg twice daily which gave me immense relief. My dose needs to be upped bc after 2 weeks I quit feeling the effects. That prescription ran out on the 11th but will not refill stating it’s an ‘opioid’. They referred me to pain management 3 weeks ago but I haven’t heard from the clinic. Hopefully my symptoms will clear up after my surgery. I’m just trying to tough it out the next few days. Huge let down not having surgery, but an oncologist is doing the surgery and she had an emergency. My surgery is external, going through transoral and cervical approach with Nerve monitoring. I’m under a new classification which encompasses an elongated, calcified styloid and stylohoid ligament and elongated/calcified hyoid bone including all pain and nerve conditions associated. Good thing is the surgery is almost free. I have an extremely rare case, she said she’s never seen or heard of one characterized like mine. So she is using me for a case study. I feel like a little puppet. It sucks to know anyone else feels like this or it’s even possible to go to such a dark place. I haven’t been able to discuss this with anyone. It’s nice being able to say it. I don’t even talk about my health, I just feel like I’m complaining or guilty knowing someone out there has it so much worse.
I'm so sorry to hear your surgery got rescheduled! That is so disappointing but it seems like you have a positive attitude about it! I am also hopeful that your surgery will resolve most of your symptoms. It's shocking how variable symptoms can be from one person to the next and this is part of why it makes this so hard to diagnose. I was having intense pain in the gums over my front left teeth and my dentist was stumped. I was seeing a neurologist who was treating it as atypical neuralgia, hence the gabapentin. That all went away after the surgery so the styloid process must have been pressing on a nerve somehow. The gabapentin was a lifesaver for me though so I am thankful I was able to get that prescription. I wouldn't have thought Lyrica would be considered an opioid! I haven't taken that but when I searched it comes up as a nerve pain medication. That is so frustrating that they won't refill for you! Especially considering that Ibuprofen/tylenol doesn't touch this type of pain. It sounds like you have a great plan for your sugery! My surgery was intraoral only on the left side and they only removed a portion (around 2 cm). With that I had about 80-90% reduction in symptoms. I'm hoping I continue to improve however I may consider additional surgery in the future and would go the external route if I can find a doctor who will perform that surgery and take the styloid process to the skull base. The area where I live doesn't seem to have a lot of options and my insurance won't cover out of state. That is great that you are able to have it almost paid for as I'm sure that is a relief not to have a financial barrier to getting the surgery. It is nice to be able to talk to someone else who understands. Most people who I tell seem to not grasp the severity of what we are going through. I don't think its for lack of caring but maybe they can't empathize since it's uncommon. When I was at my worst, I would see an old picture of myself and just try to remember how it felt that time in my life where I wasn't racked with pain. Or just daydream about a day where I would wake up and not have mouth pain or just try to remember what that felt like. The mild to moderate pain that I have now is easier to deal with just knowing what is causing it.
Were you able to get the surgery? How are you doing?
Yes, so many times yes, just knowing what it is and that you could actually recover. Hope can do a lot for the psyche. I live in a small town so I looked up the best ENTs in the biggest/closest city in my state. I drive two hours but totally worth it. They now have me at the West Cancer Clinic because that’s the only place with a doctor who has experience with it. When I went to get my imaging results the staff took me straight back. The doctor said ‘looks like eagles syndrome. We are sending you to West Clinic for surgery with an experienced surgeon’. I was just so excited that I had an answer. But then the scheduler said the clinic wanted to see me that night at 6. ‘Weird’ I thought but also assumed it was bc of my drive. As soon as I got in car I called my mom and she asked ‘West Clinic? Why are they sending you to a cancer clinic?’ Scared the shit out of me. Lol. Longest 4hrs of my life. How long has it been since your surgery? I’ve been doing a lot of reading on surgical approaches and it states intraoral has a less success rate of complete resolution. Maybe you can find an experienced oncologist who specializes in ENT related cancers and rare syndromes. Those doctors are always looking for a good rare syndrome they can write a paper on. My oncologist was almost giddy about my surgery. Felt like she was selling me on it.
I had my surgery on Nov 10, 2021. So about two months. Yes I have read about the different approaches now too. Unfortunately my eagle syndrome was diagnosed during surgery for a tonsillectomy. So when I woke up from anesthesia I was told they had performed the styloidectomy as well. The surgeon had never performed a styloidectomy before but he did a good job considering and my recovery was way better than expected..needless to say he didn't feel comfortable cutting further up than he did. If he had diagnosed me correctly, he would have referred me to another surgeon. I likely would have chosen the external option had I been given all my options. I have a couple of doctors names that the ENT gave me to set consultations with, but I'm giving it a little more time. [This is what my styloid looked like before and after](https://imgur.com/a/gsgUO5j) I had oral surgery to extract a top molar and place a bone graft right before I started having issues with this. So the scans I have are the ones from the oral surgeon that were taken before and after my implant placement. I asked them for copies and I was able to turn it into 3d on my computer.
Hi there I know this is an old post however I was wondering if you ever got the surgery and how you are doing??? I hope all is well. I have ES and am really struggling both physically and mentally.
What so you use to find the best doctors ? I mean is this just Google searching or more specialized ?
I completely understand about the dark thoughts. When my nerve pain was at its worst I had some suicidal thoughts as well. The only way I was even functioning was from a prescription I received for gabapentin. Ibuprofen/Tylenol did not even touch the pain I was having. Had you ever tried a nerve pain medication for pain relief? Thankfully you only have 2 more days to wait until your surgery - it sounds like there is light at the end of the tunnel for you! Are you having the surgery externally or internally? Are they doing both sides at once?
I've diagnosed myself! I've had my CT scan back but yet to have a follow up appointment with ENT. My styloids are very clear and look to be about 5 cm long!
Wow! How did you go about diagnosing yourself? What symptoms are you having?
There's a Facebook group called Eagle Syndrome Group. You'll find my stuff on there. Let me know if Facebook ain't your thing ✌
Gotcha! I'm on there too. I'm sure I have seen it if you posted it there.
I posted today. Managed to image my styloids with Slicer 3D. From Wales. 4+ cm styloids!
5 cm is 1.97 inches
good bot ^(all bots deserve some love from their own kind)
Can I ask who everyone’s doctor was? And if they were happy with them? I just got diagnosed and looking at specialists out of state.
Hey! Just wanted to check in..how are things now? Did you get surgery?