How many different types of surgeries or treatments are available for Eagle’s Syndrome?
Which surgery or treatment available has been the most successful and least dangerous?
Thank you for anyone that can respond.
Hi GodisAWESOME,
There are two types of surgery are done for ES. The one we prefer is the transcervical approach which is through the neck. The other is the transoral approach which is through the throat. We prefer the transcervical approach because nerves are typically monitored during this surgery to help keep them safe & the surgeon can see the styloid & soft tissues that need to be moved out of the way to reach the styloid. The transoral approach often requires that the tonsils on the operated side need to be removed to access the styloid. The surgeon then uses a laser to cut into the throat tissue to access the styloid. There is no visibility of the soft tissues that are being cut into & nerves are often not monitored. Additionally, if the stylohyoid ligaments are calcified in addition to the styloids being elongated, it’s near impossible for those to be removed via the transoral approach whereas they can be removed via a neck incision.
A number of our members have seen Dr. Hauser (who’s in your state) for prolotherapy prior to being diagnosed w/ ES (he has been their diagnostician). In almost every case, these members have said prolotherapy was very expensive & didn’t help relieve symptoms at all thus we don’t recommend it as an alternative to surgery.
All surgeries contain some level of danger as every human body has the potential to respond in an unexpected way to the medications given during surgery as well as to the surgery itself. ES surgery, when done by an experience ES surgeon is far less risky & has a better outcome than when done by a novice. The number of members on this forum that have had good outcomes outweighs those who have not. The forum itself doesn’t demonstrate that because our forum predominantly serves members who are still searching for diagnosis, the best surgeon to see, awaiting their surgery dates, in recovery from surgery, etc. There are also those who didn’t get the best outcome & are seeking support & sometimes advice regarding next steps. The members who had good outcomes generally leave the forum after surgery & often don’t come back to report their good results for which we are sorry.
I had bilateral ES & had two ES surgeries with outcomes that were good & allowed me to get back to a more normal life. I had transcervical surgeries, one in 2014 & one in 2015. It can take quite a number of months post op for nerves irritated or damaged by the styloids to recover, but many of our members were able to start back to work 2-3 weeks post op though we do recommend going back part time initially.
I hope this helps.
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By the way, I have been in touch with Dr. Hauser’s office, and he is very expensive, and I understand he usually sends his patient’s with Eagle’s Syndrome on to Dr. Ryan Osborne in California who does a totally different surgery that involves cutting around the ear and accessing the styloids from this approach. Only problem is that Dr. Osborne does not accept ANY kind of insurance and it is approximately $35,000 for each side for the type of procedure he does. It does appear he does have pretty good success with the method he uses, however, and it is done outpatient.
…anyone interested can go to YouTube and do a search for YouTube video mentioning patient, Jim Beaver and Dr. Ryan Osborne.
We are aware of Dr. Hauser & his ES diagnostic capabilities which we really appreciate but we also know that prolotherapy doesn’t work for the vast majority of our ES patients prior to styloidectomy & wish he would check for ES first before doing thousands of dollars of prolotherapy on a patient. Dr. Osborne is not the only doctor who accesses the styloids via the ear entrance. Dr. Hackman in Chapel Hill, NC, also does it that way but will additionally go in through the neck if the styloid is too long to extricate through the opening by the ear. Dr. Hackman does take insurance & has helped many more of our members than Dr. Osborne in part due to the cost & in part, I believe, because he’s done more ES surgeries than Dr. Osborne. Most doctors do ES surgery as an outpatient surgery. Since Dr. Hackman does bilateral ES surgery when needed, he does keep his patients in the hospital over night.
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Dr. Osborne’s YouTube link for Jim Beaver’s case has been posted on our forum previously but I really appreciate that you’ve brought it up again. Jim Beaver had a rare seizure-like ES symptom that we haven’t seen among our members so it was really great to get some new information from that video. We have a member who’s a professional pool player who has very long styloids. Dr. Osborne is doing his bilateral surgery & will make a video documentary of that case as well. Watch for it in the coming months.
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I have the SAME seizure like activity that happens with me when my BP SUDDENLY
OUT OF THE BLUE - goes into the 200 range (systolic); they are apparently called, “Dystonic Storms,” and Dr. Osborne says he has only had 2 other patients, besides Jim Beaver with the even rarer symptom. I need help ASAP, because they “attacks” I have involving the sudden spike of my BP is concerning, as you can image. The problem is I can’t NOT do anything when my BP goes into this range, but at the same time, it is concerning, too, because when I have the attacks involving the sudden BP spikes, my BP can go totally back to normal within 5 minutes - or it can take up to 1 1/2 hours. So, this is a HUGE problem, because right now my only option is to take 0.1 mg or 0.2 mg of Clonidine, so that my BP will come down suddenly, or do nothing. But, if I take the Clonidine and my BP goes down automatically within 5 minutes or so, I have already swallowed the pill and there’s nothing I can do about it now going low. Sometimes my BP will go down to like 80/60 or something like that. Thank God I’ve been okay. I feel like I have been on a roller coaster since April 10, 2020 when this all started! My Cardiologist said that I should not keep taking the Clonidine, because it can cause “rebound hypertension,” but I really have not choice as far as I see.
I’ve made your post public…
The styloids can sometimes irritate the Vagus nerve, so that could be causing BP issues. In the Newbies Guide there’s explanations of which nerves can be affected & what symptoms they cause:
ES Information: Common Symptoms And Possible Explanations For Them - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
And there’s explanations of the 2 types of surgery here:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There are quite a few doctors familiar with ES in Florida:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
And you can use the search icon to look up stories about what to expect after surgery; when people see an experienced surgeon then the outcomes are generally good. It can take a while to recover and for nerves to heal, so it won’t be an instant cure, but with time most of us feel that the surgery has made a big difference.
Dear @GodisAWESOME,
I hope it is ok that I reply to your post. I am sorry for any mistake or strange wording, English is not my first language.
I have the same problems like you with sudden rise of BP and heart rate. When I sleep and my head turns to one side and/or the chin moves to the chest, I wake up with high heart rate, BP, shaking all over my body and feeling extremely cold. It takes up to 45 min until my body relaxes and I can sleep again. I need a hot drink like tea, sometimes a very hot shower to relax the muscles and a hot water bottle. I stopped taking metoprolol and my cardiologist says that my heart look fine. Sometimes doing the vagal breathing helps.
I have Eagle Syndrom,AAI and maybe CCI, too. My doctors don’t know if those symptoms happen due to the styloid compressing veins and nerves, or if C1 gets too close to the dura mater. My jugular vein, different nerves and maybe the carotid vein get compressed by the styloid. The styloids stands very close to C1.
Please correct me if I am wrong. You also experience the shaking and feeling extremely cold, don’t you? It is the first time, that I hear from someone else having this problem.I wish you would not have to got through this! Do you know what causes this to happen? Is it the compression of the medulla? I would be very grateful if you would share your experiences with me. But please do not feel forced, if it is too much for you.
I wish you all the best and lots of help from the best doctors.
Teresa
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Wow, this is crazy that other have these same episodes.
High BP, extreme cold, and shaking.
Mine usually start out with a prodrome of temperature dysregulation - usually cold hands, and sometimes sweaty. Then I get a sudden surge of extreme fatigue and tiredness and it feels like I’ll pass out unless I lay down. Then my body rebounds and BP surges. I feel like there’s little blood in my head and my vision starts smearing and looking terrifying. I get super confused. I shake and shiver like I’m seizing almost.
Highest I recorded my BP is 160/100. Usually resolves in an hour or so. Have visited ER but symptoms calm down by the time they see me and I’m told it’s just panic - I’ve experienced panic attacks too and these are wildly different.
One thing that sound similar is paroxysmal sympathetic hyperactivation. Seems this could be related to sympathetic trunk issues from instability, irritation, or some other cause of dysautonomia.
I’ve found that these episodes are lessened when I’m taking zinc, vitamin C, or resveratrol the same day. Oddly I have had them occur on gabapentin which helps other symptoms. Ativan does usually calm them down but not every symptom. But sometimes seem caused by benzo rebound.
They also sometimes seem triggered by allergies. Ruled out heart arrythmia.
I’m not convinced they’re 100% related to ES for me but would like to hear more details from your experiences.
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Wow is right! My symptoms are VERY SIMILAR to what you are describing. After doing YEARS (since 2020) of research and after recently finding this Forum site, I feel nearly 100% that Eagle’s Syndrome - VASCULAR type, not Classic type) is the reason. Interesting that you mention Zinc, because I have been out of Zinc for awhile and wonder if that has been contributing to my symptoms returning in some way. I had been taking zinc since early 2021 pretty much every day, and in the last few months have just not reordered it; I was taking it to ward off Covid and I would frequently take 5,000 mg of Vitamin C micro-crystals by Natures Plus (awesome Vitamin C).
What happens with me is these SUPER DUPER EXTREME BP SPIKES will happen out-of-the-blue and can go into the 200 range (systolic) and just recently the diastolic was 192. At these numbers, I feel like I am ready to pass out and systolic numbers over 170 can cause me to start shaking from head to toe, or just from waist up (mainly hands), but this does not happen every time my BP is 170 or higher, but it happens enough! I, too, have gone to the ER early on in 2020, but they have NO IDEA what is going on and just tell you you have untreated hypertension, anxiety, or I have also been told panic attacks. These ARE NOT panic attacks. People know their bodies. Our FRUSTRATION with the medical establishment is what we have NOT panic attacks!
I am learning that the shaking I am experiencing with the BP spikes might be what is called “dystonic storms”. I learned this after researching about Eagles on the internet after finding a patient by the name of JIM BEAVER who saw a DR. RYAN OSBORNE in California; Jim Beaver had the severe shaking that was apparently diagnosed as dystonic storms. He had surgery by Dr. Osborne, who unlike some other surgeons, cuts AROUND THE EAR and removes the styloid process this way. HE DOES NOT ACCEPT INSURANCE OF ANY KIND, except for the one office visit the day before surgery, he will submit to Medicare if a person has Medicare. If you do a Google search with both names, look for the YouTube video and you will find information on this.
I’m planning to go read Barootz’s story and videos on this site; he has seen Dr. Constantino in NY who has helped him, so I want to hear what all he has to say. I don’t think he’s been having “dystonic storms,” but I am planning to do a virtual visit with Dr. Constantino so I am trying to learn more about him as a doctor and the surgery he does.
I can’t remember how to send a private message to you. I would like to give you my phone number so we could talk, or if you know how to send the private message to me and don’t mind giving me your phone number, I can call you. With a condition as complicated as ours, it is easier to talk on the phone, sometimes, rather than messaging. 
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Teresa,
Have you gotten my reply to you? I get confused sometimes on how to navigate this site; perhaps I answered you in another area?
Julie
@GodisAWESOME , to message someone you just click on their avatar & click on the blue Message tab which comes up on the right hand side. Once you’ve written your message, click on the blue message tab at the bottom again to send it.
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Hi Jules, I didn’t see this message before I answered you in the open forum message a minute ago.
Where do I find the list of everyone?
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Just scroll up this thread from this message till you get to @zeagle’s post. Click on his screen name & then follow the directions @Jules gave you. If you still can’t figure it out, we can talk again.
Hi Julie, I am trying to send you a personal message. Is this possible?
I was ill but now I am back on track
Best Teresa
EDIT: I FOUND THE MESSAGE BUTTON
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I don’t feel So bad now. I have found a site to be very difficult to maneuver, but once you understand the quirks you can get around better. Yes you can send me a private message. Hopefully I’ll know where to get it. LOL
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Fascinating.
The BP and shaking definitely suggests sympathetic hyperactivity. Check out paroxysmal sympathetic hyperactivity.
If it is caused by vascular ES, I wonder if it could be something similar to a Cushing reflex.