My daughter ,30 years old, was diagnosed two weeks ago. She is trying to get in to see Dr. Bunnell in Jacksonville Florida,UF since he is in our home state and takes her insurance. I recommended she join the forums and FB groups for insight. She did and is now terrified of having the surgery hearing all the horror stories and not great outcomes. The symptoms are debilitating and have made trying to sustain a job difficult. Besides Eagle ear , she has POTS and many other diagnosis’. Is the path of surgery worth the terrible stories we have read? So many of you have had complications and very long recoveries. We are looking for honest thoughts.
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@VeronicaC yes, in my experience it only gets worse, it is progressive. My understanding is the sooner it is addressed the easier (I use that term loosely) the recovery. I would recommend surgery without a doubt. There is no upside to not having the surgery.
If you are inclined a second opinion with Dr. James Liu in NJ is worth the effort or Dr. Kamran Aghayev in Turkey.
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@VeronicaC - As your daughter has POTS, she could very possibly have internal jugular vein (IJV) compression along w/ her elongated styloids. Was her diagnostic CT scan done w/ contrast? If so, & if she has IJV compression, that additional problem should be visible in her images.
Dr. Bunnell does not do surgery for ES with IJV compression. If that is something shows up in your daughter’s imaging, she will need to have her IJV(s) decompressed during the styloidectomy surgery. A doctor who doesn’t do the decompression surgery, such as Dr. Bunnell, will leave her needing a revision surgery so that can be done. Dr. Liu in NJ or Dr. Aghayev in Turkey, whom, @MGORNEAU mentioned would be good resources for consults. Both do consults via telehealth for patients who are out of state/country. Having a consult does not commit your daughter to surgery with any doctor. Dr. Aghayev was educated in the US & did his residency in Tampa, FL.
•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ
•Dr. Kamran Aghayev - https://kamranaghayev.com
Link to set up a consult: Get Expert Neurosurgeon Consultation & Second Opinion Online
To learn more about Dr. Aghayev, read the last post in this discussion which was written by @SCJeff - Worse than I thought - #51 by SCJeff
Regarding surgical outcomes - ES surgeries can take a number of months from which to recovery, with complete nerve recovery sometimes taking up to a year or more. All ES forums suffer from the members who have good outcomes not coming back to tell about it as they’re getting on with their lives once they feel better. Those who have slower recoveries or unresolved symptoms post op come back for further support, so it’s those stories that seem more prevalent on both this forum & FB.
In spite of our best efforts to inform our members to the contrary, too many ES patients expect their symptoms to be gone soon after surgery, but that’s an unrealistic expectation because ES surgery is major surgery. Additionally there can be other undiagnosed health issues whose symptoms don’t become obvious until after ES surgery when some symptoms don’t resolve. As an example, we have numerous members who have Ehlers Danlos Syndrome which causes weakness of the ligaments througout the body. ES w/ IJV compression is only one of a number of compression syndromes & other health challenges these people experience so they remain somewhat symptomatic after ES surgery until the other problems are able to be dealt with.
Post op swelling after ES surgery can last 6-8 weeks. That swelling continues to irritate nerves, & possibly vascular tissues, thus the sense that one is beginning to recover from symptoms sometimes takes 2-4 months after surgery. Surgical recovery is also not linear i.e. symptoms can begin to disappear but then return for a while then go away again, over a number of months. That is normal for recovery from ES surgery, but again, many misinterpret the coming & going of symptoms as non-recovery. A person with bilateral styloid elongation, can experience an increase in symptoms caused by the remaining styloid after the first styloidectomy. This gives the false sense that the first surgery wasn’t helpful. In most cases, bilateral styloid elongation requires that both styloids be resected for the best results.
Here’s a link to a post w/ a lot of information about ES symptoms & possible causes:
I know this is a lot of information, but I hope it’s helpful.
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Well, I can say yes it is worth it - in the hands of the right surgeon. I will share that I had styloidectomies (bilateral) only in 2020 and went in for IJV decompression and C1 shave this past spring because the first doc didn’t believe in IJV decompression other that to cut styloid off at skull base. My severe headaches had gone away. Im still recovering and have other issues but now my daughter, age 30 in line for surgery. She has been disabled from POTS, MCAS and hEDS since age 13. She has significant blood pooling in her legs. There is new data coming forward about POTS and vascular compressions. Hope that helps. Feel free to private message me anytime
We are looking at multiple vascular compressions (Nutcrackers/May Thurner) at this time and started from neck down. She needs IJV decompression and c1 shave to start, but may need to look at TOS. She also has flattened venous sinus on one side of skull and inter cranial hypertension.
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Thank you so much for the information. I told my daughter to see if dr liu accepts her insurance and make a telehealth appt if so. Turkey is not an option for us. I appreciate all of the information. We will look it over.
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The others have given you good advice, it’s certainly worth checking to see if she has vascular ES before you decide about surgery; the surgery is a bit trickier but with an experienced VES doctor, outcomes can be good. I had bilateral IJV compression and was feeling pretty ill before my surgery, it was definitely worth it for me and I got my life back!
If Dr Lui doesn’t accept her insurance, let us know and we can suggest other doctors, I’m glad that she has you on her side, not easy seeing your child suffering so hugs to you both 
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The other option as well is Dr. Costantino in NY. He does do telahealth. His office is in flux right now thought with staffing issues. Its important to get minimum 2 opinions on this with the recommend specialists. As many in this group know, I waited a long time for surgery and thought I vetted well. I had surgery in February 2025 and it looks like the surgeon did not do enough in my case. My surgical report does not even make sense. Do your homework. Get multiple opinions and as much testing as possible including the invasive venogram in the hospital..
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I just wanted to add that being on a forum will usually expose you to the worst case scenarios. I’m sure there are a large percentage of people who get the surgery and move on with their lives. It’s the people who continue to struggle who continue to hang out on the forums. I’m not saying that in a negative way, I’m just saying you’re more likely to hear about complications, etc from people who still stay active on the forums.
I can’t say whether it’s true or not, but Dr. Costantino is saying they are the point with the surgeries now where they have about an 80% success rate and with a low rate of complications. Also, I believe just in the last five or so years, they are getting better and better at these surgeries. Others who have been here longer may agree or disagree, but that was the vibe I’ve gotten. Dr. Costantino is now saying the C1 plays a much bigger role than they previously believed so many people were getting styloidectomies that weren’t resolving the problem. Now that they are going after the C1, they are seeing much better symptom resolution.
Again, I can’t say that this is true, it’s just the information that’s being put out there and to me it makes a lot of sense.
Hope this helps and hope you and your family can find some relief. I will post more info on my specific situation as it continues to unfold!
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Hi! I live in Florida and saw Dr Burnell but did not have surgery with him. This was my second surgery so I was well versed in knowing what to look for. I would have been fine having surgery for my non vascular eagles with him but I choose my original doctor who now does not do surgery. I have been in an Eagles Facebook group for more then a dozen years. It is not filled with horror stories so I don’t know what groups she is in but it is not the Eagles group I am in. Surgery for 80 percent who it is recommended for find success according to the stats I have read. 20 percent did not find relief but there is always a chance the styiolds are not the issue especially if the patient has several diagnoses. I was in sever life ending trigeminal nerve pain for 5 years before diagnosis, unable to work or have any kind of life and surgery gave me my life back. Since your daughter has a diagnosis of POTs I would get several opinions on if the styiolds are part of the problems. If she has vascular eagles I would not see Dr Burnell I would see one of the vascular Eagle doctors that deal with more complicated cases. Burnell is not know for vascular Eagles. Someone can have elongated calcified styiolds that are not symptomatic that is not considered Eagles….therefore surgery would not help. Eagles is not a straight forward diagnosis it is a educated guess of looking at styiold, size, position and symptoms. Wishing you well in your journey.
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Dr Hepworth in Denver is an excellent vascular doctor and many people have found success with his practice. The wait to go there is not short but well worth the expertise. They have many patients that fly in for the procedure.
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My daughter is almost a week out from surgery with Dr. Costantino. I highly recommend him and his staff. We did lots of research before surgery, and chose very carefully. My daughter is recovering well, and almost back to her pre-surgery self (in only 5 days). She is also noticing multiple improvements in symptoms, and we are very encouraged. I would definitely do your research, but know this surgery is life changing for many, my daughter included. Best of luck!
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Quality of life. My doctor told me. I had surgery 5 years ago on 1 side. I’m so thankful I did!
Most surgeries are hard. Has anyone mentioned the alternative of death or permanent nerve damage if Not operated?
I had surgery at Advent Hospital in the Orlando area.
I’m now planning on my other side soon.
I’m praying for peace as she moves forward. It is a hard decision, but worth it.
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@Jwshackel so pleased that your daughter has notices an improvement already! That’s brilliant news… just to forewarn you & her that symptoms can come and go, and it is common to to have setbacks, especially if she’s keen to get back to living and maybe overdoes things a bit! Praying that she keeps getting better 
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@Katflorida I hope that your second side goes well too, have you got a surgery date?
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@Katflorida - I’m so glad your first surgery helped so much but am sorry you need a second one. Nice that you had a 5 year break before surgery #2 needed to be done. Do you mind sharing who did your first surgery. It’s been long enough ago, I can’t remember.
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Dr Haughey, retired now. He did my left side, now my right is needing attention.
Like you, I’m a believer 
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Who did your surgery?
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May I ask who is doing your surgery this time around?
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I am in the process of getting prior authorization from insurance to see Dr Townsend in Celebration Florida. She treats Eagles. Their office told me my former surgeon was part of their group. He’s now retired. I have yet to have an initial appointment.
My surgery, 5 years ago on the left, completely cured me. Now for the right side.
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Thank you. I hope all works out for you. I will have my daughter look into that dr.
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