I am new to ES and Doctor suspect that I have ES before a month. He prescribed me antidepressant medication and I am feeling good with medication. So do I have to go for surgery or I can continue with medication? will there be any issue could occur if i will continue medication ?? Please guide me as I am very nervous about this ES.
So glad you’ve joined this wonderful forum! In answer to your question, the only “cure” for Eagle Syndrome is surgery. There are people such as yourself who find other solutions that work for a time but as the styloids get longer or the ligaments calcify more (or both), the symptoms usually break through the medication “barrier” & the medication stops being a solution for the symptoms. At that point, surgery is a good idea. There are several people from India who have joined this forum this year. None of them were able to find a doctor who would do surgery for them. If you know of a surgeon who does ES surgery, could you please let us know the name. We will add it to our doctors’ list. We have no one on our doctors’ list from your country.
If you click on the General Discussion link above, under “RECENT” you will see a link for the “NEWBIES GUIDE to ES”. Click on that & start reading. There is lots of helpful information there.
Please feel free to ask any questions you may have or talk about your symptoms. We’re here to help you not be fearful & to understand what you have & reassure you as you work through how to manage Eagle Syndrome in your life.
Thank you Isaiah for quick and accurate response. Well, I have read about ES that even after surgery of styloids it will keep calcifying. In such case patient have to go for another surgery. Is there any scare in styloids surgery ?? I have seen some ES surgeon doing surgery in youtube video. It is not that scary by watching it as they are doing surgery very easily. But I have doubt about my country regarding good ES surgeon. Well will let you know more once i will do CT scan. Thank you and I am lucky to be part of such a good forum.
We have had a few members who have had surgery & then the styloid processes grow back, but for the majority of people they don’t.
If you’re able to see an experienced surgeon, then the surgery is not that scary, & the risks are less, but obviously that could be a problem in India… Skull base surgeons/ Otolaryngologists are worth a try if you do decide to see someone, as they are used to operating in the same are as the styloid processes, or head & neck cancer surgeons for the same reason. Also, if you have time, if you have a read through the Newbies Guide sections; some of the research papers mentioned are written by Indian doctors, so it could be worth contacting those authors… It’s one of those things I’ve been wanting to do for ages, but haven’t had the time!
I was put on amitriptyline for pain relief, & it worked pretty well for a year, so I didn’t consider the surgery. But then I had a disc problem in my neck, & I think that it maybe altered the position slightly of the structures in my neck & I began to get vascular symptoms (it’s the only thing which changed, so it’s all I could think of which might have caused the new symptoms), & that made the decision to have surgery much easier. I’m so glad I did as I feel so much better now.
Let us know how you get on!
It is really encouraging post from you. I will search for some great doctor near me and will inform in the forum as I will get to know. So far I have visited Zydus Hospital here and cousulted to Dr.Lav Shalarka (ENT specialist). I will visit him after few days and will discuss things which I learnt from this forum.
Thanks again Jules.
The videos on youtube only show intraoral surgery. Surgery done from an external approach through the neck provides the surgeon w/ better access to the styloid process & the stylohyoid ligament so the ligament can be removed & the styloid process can be cut back to the skull base. Additionally, the external approach allows the surgeon to monitor the nerves & vascular tissues that exist in that area of the body so as to do the least amount of damage to them during surgery. The intraoral approach is less safe in that nerves & vascular tissues can’t be viewed. That said, many people on this forum have had intraoral surgery which has relieved them of their ES symptoms so it is also an effective tool in treating ES.
You are in beginning of what I call a “rabbit” trail. When a doctor cannot properly diagnose ES then, they start trying to see if you are just depressed…ES is very hard to diagnose and it is rare. Anti-depressant meds will do no good. You have to keep moving forward and get a ENT doctor and keep going until you find a doctor that knows about ES.
Jules, I am so happy that you started this Forem for people to get information, encouragement, and support. ES is so hard to live with and it is such a hardship for allot of people that are still struggling with getting a correct diagnosis.
While some of us have gotten diagnosed and have had the surgery, I hope that more and more people will get the surgery and begin to live full lives.
Thank You for doing this…
That was really helpful and it increase my knowledge of another side of surgery. This will really helpful to me if I will go for surgery then will consult this point with doctor. You people are really great in sharing knowledge. Thanks Isaiah.
Another up side to the external approach is that more of the styloid process can be removed. Dr. Samji who is the most experienced ES doctor in the US tries to remove the styloid process all the way back to where it attaches on the skull so there is almost no chance of regrowth. He also removes the stylohyoid ligaments even if they are not calcified to prevent them from ever calcifying. They play a minor role in swallowing and most people don’t notice they’re gone once they’re removed.
I will be praying that God will help you find the best possible doctors to help you overcome ES.
You are right Isaiah about Dr.Samji. I read many posts stated Dr.Samji’s name. From those post I came to know about Dr.Samji that he must be genius doctor. Hope I will get someone like him here in INDIA. Quite difficult to find such doctor here but lets hope for the best. Initially I was thinking about inside surgery but you post completely changed my view. Thanks for very needed support at this point. Your every post clears my doubts about ES.
God bless Isaiah.
A big Thank You.
Thanks, Hadassa, but I didn’t start this community, so can’t take the credit! About the Bens Friends category
Ben started a group for people with AVM, & it’s grown since then to include lots of other rare diseases, like ES. I’m not sure when this ES group was created, but it’s been going quite a long time- I only moderate it along with Isaiah40:31.
I agree about how helpful the site is though, I wouldn’t have found out about vascular ES & the doctor who did my surgery without this place, so I am forever grateful!!
samir, I wanted to suggested that there is, in fact, the point of TOO MUCH information. I advise you stay away from graphic you tube videos of surgeries. There’s a reason you’re knocked out during surgery and there’s a reason you really don’t need to see what it’s all about before it’s done to you. I firmly believe watching actual footage of a surgery you’re considering is the way nightmares are made. Somethings you’re better off not knowing in advance.
Completely agreed with you point Azurelle. Appreciate your view, Its create psychological effects about surgery and one scare to do it after watching but actually initially I was completely unaware of this ES so got strong feeling to look into what is ES and how it effect our daily life, how to diagnose and all. During this time I was too much eager to see how they do surgery and thats why I just search for those things on google and found some video and watched them. Actually you are right I should avoid such video as my doctor also told me that please trust on doctor more than google. .Its not always that we get right information on internet and different people have different issues and different stages of particular problem. So believe in doctor and trust on them instead of too much information gathering on internet. So you’re right and I won’t see much on youtube and other sites. Now I got livingwitheagle forum and its is best so far with genuine people.
samir - I did what you did & Googled surgery. I watched several on youtube but my father was a doctor so I am curious about such things. I later learned about the external approach but could never find a video. I would love to see how it’s done but I’m sure since it’s more invasive than the intraoral surgery there are no videos for public viewing. I do agree w/ azurelle though, for some people watching those videos creates fear. For me it was interesting.
They have found older anti depressants like desiperamine and nortrypteline( not sure of spelling) affects the way the brain perceives pain.I also have a nut cracker esophagus when it spasms it helps with the pain. It does not help with the eagle syndrome pain for me but it is great it helps you. It does not cure anything just sort of hides the pain.
Good information! Thank you, Amarie. That is likely why Samir is being helped by nortriptyline.
I’m on Nortripyline for pain. It’s worked well for me so far, but I’ve only been on it for about 4 months. I’ve read that they typical progression is to achieve relief for awhile, then as the pain returns, increase dosage perhaps several times. Once the effectiveness of the medication wears off, you have to start thinking about other options. I’m just enjoying being relatively pain-free for as long as I can. I’ll deal with next steps when the pain arises.
(Just a side note: the medication works well for my pain, but doesn’t touch other ES symptoms like globus sensation and some facial, ear, neck pain.)
Antidepressants, like tricyclics (Nortriplyline is one of them), can be used as symptom management for neuropathies or to manage depression. The difference is dosage. Lower doses are effective for pain management while higher doses are used for depression. Currently I’m on the lowest dose, 10 mg.
*Edited to add: My info about what and how tricyclics are used has come from my own research. I’m not a medical doctor, so am not trained to offer medical advice.
Good luck! We all know what you’re going through. Some of us (me included) are still on the hunt for a firm diagnosis, but we all share many of the same symptoms and experiences.
I went to hospital yesterday and got my CT SCAN at zydus hospital one of well known here in India (GUJARAT STATE - AHMEDABAD CITY). I am posting photo of CT SCAN here. Doctor told me that I dont have ES as my styloid is not much longer and its of normal size. They have doubt that i may have another issue namely glossopharyngeal neuralgia which has the same symptoms as ES. If anyone has such issue please throw some light on it. I am posting CT SCAN photo here. Thank you for your support guys.
God bless us all.
Firstly, Glossopharyngeal Neuralgia (GPN) can be caused by ES- the styloid processes can irritate the glossopharyngeal nerve, causing pain. So just because they’ve diagnosed you with GPN, doesn’t mean you don’t have ES. (There’s a Bens Friends Facial Pain group with good info about GPN & pain relief for it if you want to read up on that: http://www.livingwithfacialpain.org/ - you can just read the info if you don’t want to join.
Secondly, different doctors use a different ‘average’ for the length of styloid process they class as normal- anything from 1.5- 4 cms! The generally accepted average length is 2.5cms, so looking at the measurements on your CT both are over that.
And thirdly, there are research papers which show that it’s not just the length of the styloid processes which cause ES, but also the width, and angle too. Both yours are quite pointy, and the one on the left of the screen is quite angled, so potentially could cause symptoms. I’m not saying you have ES- & we’re not doctors on here, just people who’ve had it ourselves- but that just from this CT, it can’t be ruled out. Some doctors will diagnose ES from seeing if an injection of pain relief (lidocaine or lidocaine & steroids) into the tonsillar fossa region helps. If it does, then they can diagnose ES. Maybe that might be something you could push for? Alternatively, there are medications which can help with the GPN or any nerve pain, so it might be worth trying, it might help your symptoms enough that you’re okay to not have surgery? There’s info in the Newbies Guide section on this sort of medication. Did your doctors prescribe anything, or suggest a cause for the GPN?