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Eagle Syndrome - Online Support Group

Surgery for Eagles is usually successful!

I'm seeing a number of new people saying that it seems like Eagles surgeries don't usually work and I wanted to dispel that thought. They usually do work. People are usually helped a lot by their surgeries. A lot of the people that have been helped don't come back to the forum anymore because they're out living their lives.

Some people have issues afterward, but in my opinion, it's usually because the doctor didn't take enough of the styloid out. Then they have to have a revision surgery, which is harder to convince a doctor to do.

Even if some people are still having problems, they're usually better than they were before the surgery.

From everything I've read, seen and experienced, pain management just doesn't work for Eagles. Or maybe it does if your symptoms are not that bad yet. But surgery is really the only cure.

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I posted this almost a year ago and I wanted to bring it up again because I'm reading quite a few posts where people are scared of surgery. Really - the surgeries as so worth it and are usually not as bad as people expected they would be. Lots of people post after their surgeries and talk about it and say that it was better than they expected. Look back into prior posts to see what people have said about their surgeries. You may have to go back quite a bit to see them, but it's worth the effort. Some people have posted almost a day by day description of what they went through. But 99.9% of the time, people are very happy after their surgeries and are glad they did it.

If you have a good surgeon, they know what they're doing and can get in there without causing bad side effects. Sometime people have some issues after surgery, sure, but they're usually gone within a couple months and almost always aren't that severe. Surgeries are much better than having Eagles. In my opinion.

I've had 5 Eagles surgeries now. I'm recovering from my LAST one done on Sept 1 at Northwestern Hospital in Chicago by Dr. Urjeet Patel. He was fantastic. He has done Eagles surgeries before, but I don't know how many. (I neglected to ask him how many he's done.) But he is a very good surgeon and did a great job and finally took the last of my styloid out that has been giving me grief for 4 years. He had to go in pretty deep to get the last piece and it's a little harder recovery than my last couple surgeries. I went back to work 2 weeks after the surgery.

Glad to hear that you were able to find a good surgeon to help you. Best wishes for a good outcome and speedy recovery!

Thanks Kay!

Kay said:

Glad to hear that you were able to find a good surgeon to help you. Best wishes for a good outcome and speedy recovery!

Thanks for re-posting this heidemt- I think you're right that a lot of people don't come back on here because they don't need to, so we don't always hear about the good things! Often with a lot of forums it's the people who things haven't worked for, or who are struggling come for support, so that can sort of shift the balance, and it looks like most people have a really bad experience! No denying it is a risky procedure, but living with a spike (as SnappleofDiscord described it- I like that!!) in your neck isn't plain sailing either!

Hopefully you'll continue to heal heidemt!

I think we should point out that doctors (or the good ones I've been to) have monitors hooked up to each of the various nerves while they do the surgery so they can tell what's going on with them. When one of my surgeries was over, the doctor told me I may have a some numbing of my bottom lip, but that it would go away. They watch what's going on with the nerves, so he knew I may have an issue. I did have a lisp for a month or so, but it went away, just like he said.

Thank you for re- posting this!

I just wanted to reply as one of the many success stories I've read on this forum. I had external bilateral styloidectomy in March, and now 7 months later I can honestly tell you that I've got my life back. All of my ES symptoms are gone. The surgery was so worth it!

When you are fighting through each day with crazy ES symptoms and it feels like you are going to stay this way forever, please know that it doesn't have to be that way. I agree that surgery is the only answer for Eagle Syndrome and if the symptoms are lessening your quality of life, then I encourage readers to have the surgery. I also encourage the external route if your ES is considered at all extensive or severe. It gives the surgeon better access and better visual and allows for removal of entire process & ligament as necessary. For me, this was the only safe option due to the proximity of the carotid artery to my styloid ligament.

I look forward to hearing more success stories and thank you Heidemt for posting!

My son's first 2 styloid surgeries were very successful and I was on here for a few months afterwards posting a lot and then as mentioned, I got busy with other things. His most recent (3rd surgery due to regrowth of the styloid) is still in the healing process and it is slower than previous surgeries. But surgery was the ONLY THING that ever gave him relief after years of medications and alternate therapies like acupuncture, diet changes, etc. And in time, this one will bring him relief too. Getting there is the hardest part. It is hard to have patience for healing after a surgery. Now I have a better understanding of others who said the nerves took a long time to heal afterwards.

Grows back??? How long did it take? I had an external Styloidectomy up to my skull last March and have had what I thought was bad nerve pain in the same area for the past 2 wks. Scared to death! I have been great for several mos with the occasional nerve pain, but past couple wks have been concerning as its every day.

If it continues, you may want to get a new CT. My son's grew back after a year (and he had external taken back to his skull base as well), but he is a kid who had a very large growth spurt during the same time. For other adults that had re-growth, I think it was much longer (and there aren't a lot of them). My son was pain free for 10 months and we waited 2 months before I even thought it might be structural. A new CT confirmed it. Unfortunately he is bi-lateral and had bi-lateral pain recur. Please don't panic. Just want a little while longer and if it persists, then you can request a new CT.

April E said:

Grows back????? How long did it take? I had an external Styloidectomy up to my skull last March and have had what I thought was bad nerve pain in the same area for the past 2 wks. Scared to death! I have been great for several mos with the occasional nerve pain, but past couple wks have been concerning as its every day.

I need to talk to someone that has had it . I have been in extreme pain for a year and getting worse. I need help and someone who can tell me if they experiene the same symptoms. I keep thinking I am dying form throat cancer. I have gone to 5 ents only one says I have it. I need someone please I feel so alone and depressed and scared



Maui Miracle said:

I just wanted to reply as one of the many success stories I've read on this forum. I had external bilateral styloidectomy in March, and now 7 months later I can honestly tell you that I've got my life back. All of my ES symptoms are gone. The surgery was so worth it!

When you are fighting through each day with crazy ES symptoms and it feels like you are going to stay this way forever, please know that it doesn't have to be that way. I agree that surgery is the only answer for Eagle Syndrome and if the symptoms are lessening your quality of life, then I encourage readers to have the surgery. I also encourage the external route if your ES is considered at all extensive or severe. It gives the surgeon better access and better visual and allows for removal of entire process & ligament as necessary. For me, this was the only safe option due to the proximity of the carotid artery to my styloid ligament.

I look forward to hearing more success stories and thank you Heidemt for posting!

I am in so much pain need to talk with someone in person about this no doctors are helping me andd I am so much pain I keep thinking I have throat cancer

Sukauskas- I'm sorry that you're in so much pain; it's an awful thing you have to deal with. All I can say is that don't give up, many members have been in the same situation as you, needing a doctor to take them seriously. There's info about pain relief in the ES info section- some painkillers can help if the pain is from nerves, and also some members have found relief with Lidocaine patches. There are other medications too- it's in that section. It's a good idea to try and learn as much as you can, then go to see your primary care doctor and ask to try something- it can take a little while for some medications to work, and sometimes it can take a bit of juggling with a couple of different ones. There's also info about the best scans to get a diagnosis; a CT scan with contrast shows the styloids well, and any compression of blood vessels, so you could again read up on that and request one if you haven't already had one. There's also a link to a survey of symptoms too, so it might help to have a look at that and compare your symptoms.

I'm not sure what tests you've had so far? But I'm sure they will have looked for any signs of cancer, so (I know it's easier said that done though) try to not worry about that. If you can contact one of the doctors on the list who are familiar with ES then hopefully you can get someone to take you seriously. Other members have had scans done, and then sent the results to different doctors to try to get help. But it can take a while and you mustn't give up. Read up as much as you can so that you can make informed choices and push for what you need. Good luck!

I was EXACTLY in your shoes 2 years ago.....I thought I was dying of throat cancer....NO one BELIEVED ME!!!! 5 ENTs later, 2 Neurologist, 3 Endocrinologist, 1 Allergy specialist and, 10 GP's and OVER 60 Appointments later I found a doctor who was willing to perform surgery and believe something MAY be wrong. Your not alone, WE ALL been through it as its such a rare rare condition that often goes mis diagnosed...I deal with severe pain everyday, its no joke!! My pain is also getting worse everyday....I can't work or get off my couch most of the days...Pain killers don't work either... Waiting for surgery probably 4 more months till i get it

sukauskas said:

I need to talk to someone that has had it . I have been in extreme pain for a year and getting worse. I need help and someone who can tell me if they experiene the same symptoms. I keep thinking I am dying form throat cancer. I have gone to 5 ents only one says I have it. I need someone please I feel so alone and depressed and scared

Iā€™m having trouble locating Doctor list for Eagle Syndrome-I click on dr list site comes up stating latest from 2015 but when I click on that it returns to a comment from the forum?? Can anyone advise? Thank you

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Hi Sam. The doctors list is an attachment to that comment on the forum, so look toward the bottom of the comment for the attachments. There is one for US doctors and one for other country doctors.

Sam J said:

I'm having trouble locating Doctor list for Eagle Syndrome-I click on dr list site comes up stating latest from 2015 but when I click on that it returns to a comment from the forum?? Can anyone advise? Thank you
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hello everyone, I have been gone a lot and will be from now on. I have a lot of degenerative disc problems and cannot be on the computer much anymore. What time I am on, I need to do work for my family who are handicapped.

I just want to reply that surgery worked for me. I had my styloid resected. They took out 2.8 cm. My CT scan did not say how long my styloid was, but I could touch it in my tonsil bed. Mine was intraoral, and it took me 11 weeks to really feel better. It took much longer for the scar tissue to disappear. I had my surgery in February 2013. I am not having any more problems with the Eagles. I do from time to time have some jaw pain, but I wear a bite guard for awhile and it dissipates. I have some TMJ, so I deal with it that way. The internal ear pain only comes back when I need to use the bite guard. I used it nightly for several years, only to discover that it was the cause of my acid reflux, therefore I only use it now when I need to relax my jaw muscles and only during the day when I am not sleeping.

I agree that the external would probably be the better approach, but my doctor only did intraoral and I had not found this site until 4 days before surgery. By that time,I was just done with the pain, so I followed through with my surgery and I am glad that I did. For those of you, who go to lots of doctors, my doctor is an ENT and said the only reason that he knew about Eagles is that he had it, himself. So doctors only learn about it in textbooks and then forget about it.

I would still be contributing to this site regularly, but I just cannot do it anymore. Best wishes to all of you. Please, follow through after you are healed, because many people are counting on us and on this forum. I see that one of our members is seeing a docto in Barcelona, I hope that is a great experience. It puts a smile on my face when I see new doctors on the site.

Thanks for all the work you've done on the doctors list, and the advice you've given. Sorry that you and your family have medical problems- sounds like you have your hands full. Thanks again, and best wishes!

Thanks Emma for all you have done for this site. I know you have done a ton and it has helped so many people including my son. You are wonderful and I pray that your family is well taken care of. Sadly, there is too much suffering in this world. You are a gem and a great person.

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