ES Information: Treatment Available For ES- Surgery
Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used are personal experiences, LivingWithTheEagle members’ experiences, and research from professional publications (some of the articles can’t be read fully unless subscribed to). Many thanks to heidemt for her research and contribution, and for her example of being your own advocate and not giving up. Members are encouraged to seek medical opinion and these pages are not intended to replace that. Members are also encouraged to research more for themselves- there is more research available but with the limitation of time and neck pain, this was the best that I could do! Past discussions are useful sources of info as well; search whatever the subject is, and you’ll often find someone who’s been through it too!
The only ‘cure’ for ES is to have a styloidectomy.
‘It is generally accepted that surgical resection of elongated styloid process is the primary treatment for Eagle’s Syndrome’. Transoral Surgical Resection of Bilateral Styloid Processes Elongation (Eagle’s Syndrome), by Bahurudin, Rohaida, Khairudin, 2012:
I’ve come across several articles which mention surgery success/ failure figures, including the one above:
‘Surgical failure rate is around 20% by means of partial relief of symptoms or recurrence of symptoms and can be due to entrapment within fibrous tissue of adjoining nerve, or inadequate shortening leading to constant irritation.’ And the authors mention ‘It is generally accepted that surgical resection of elongated styloid process is the primary treatment for Eagle’s Syndrome’. Transoral Surgical Resection of Bilateral Styloid Processes Elongation (Eagle’s Syndrome), by Bahurudin, Rohaida, Khairudin, 2012.
And another mention: ‘Prognosis of ES is guarded by surgical failures (up to 20% of patients). This may be due to intraoperative injury, subsequent fibrous entrapment syndrome, or inadequate shortening of the process, assuming that the diagnosis was correct in the first place’. (Ghosh and Dubney, 1999) http://www.saudidentaljournal.com/article/S1013-9052(10)00094-5/fulltext1
Also:‘Most patients found relief from symptoms within 2 weeks of surgery, all but one patient had complete relief in the follow-up period of one year, one patient had 75% relief.
Literature shows success rates of 80-100% following surgical intervention. No patients had swallowing difficulty with swallowing function following resection of the hyoid.’ (Candice C. Colby, MD; John M. Del Gaudio,MD in their paper ‘Stylohyoid Complex Syndrome- A New Diagnostic Classification’, JAMA Network). Although this was a very small study- only 7 patients!
In another study, styloidectomies were performed on 28 patients with elongated styloid process causing glossopharyngeal neuralgia. Of the 28 cases of elongated styloid process who underwent unilateral/ bilateral styloidectomy, 27 patients had total relief of symptoms. (Signiﬁcance of styloidectomy in Eagle’s syndrome: an analysis, by Sanjeev Mohanty, N. S. Thirumaran, Gopinath M., Gaurav Bambha, Shalini Balakrishnan, 2009)
Some members have had complete relief, others partial. In the small survey results I have record of, only 6 members had had surgery; 2 had complete relief, 3 said that surgery helped their symptoms, and one didn’t comment.
It’s worth also considering, when reading posts on this forum or on other forums, that the people who have had successful surgeries probably don’t need to come back on for support. We often don’t hear from people again, but people who’ve not had a good result from surgery still need the support so still come on. So sometimes it can give perhaps a biased view if you only see negative posts! See heidemt’s discussion: Surgery for Eagles is usually successful!
On the forum one member was told by her surgeon that it may be if the styloid has compressed a nerve for some time, then it could be permanently damaged, so would still have pain. And nerves can take a long time to heal; several members have found they keep gradually improving for a year after surgery.
++++The best advice which we can give is to make sure the doctor is experienced, that they know how important it is to remove as much as possible, and certainly not to just break the styloid off or into bits.
Which surgery is best- Internal (Intra-oral) or External (Extra-Oral)?
Your surgeon may well have a preference for intra-oral or external, and may have good reasons for this. Opinion seems divided among doctors for this, although there seems to be slightly more in favour of external.
External involves an incision in the neck, which will leave a small scar, depending on where the surgeon does the incision. There is a larger exposure to the area, meaning better access to the styloid process, so it can be removed higher up towards the skull base. This technique is suggested if the styloid is very large or heavily ossified, or for removal of the ossified stylohyoid ligament. There is less swallowing discomfort post-surgery, and less risk of infection deep in the neck. There could possibly be a longer recovery time depending on where the surgeon cuts, as sometimes muscles need to be cut. But overall the main benefit to this surgery is that more of the styloid process can be removed, meaning more chance of success.
Intra-oral/ Transoral appproach means the surgeon operates from in the mouth, and may need to remove tonsils. The advantage is that there is less tissue dissection, a shorter surgical time, no visible scar, and the recovery is the same as for a tonsillectomy. However, there is a greater risk of infection, and generally less of the styloid process can be removed. Healing time may be longer, and it will be less easy to eat following the operation.
As mentioned in ‘Eagle’s syndrome – A case report and review of the literature by Khandelwal, Hada, Ashutosh Harsh: ‘The most significant advantage of an external approach is enhanced exposure of the styloid process and the adjacent structures, and this outweighs all other considerations. It also facilitates the resection of a partially ossified stylohyoid ligament. Transoral resection causes no outside scars, but involves the risk of deep cervical infection and possible neurovascular injury’. (Chase et al, 1986, Ceylan et al, 2008).
What are the risks of surgery?
Obviously your doctor will discuss these with you before operating, so be guided by them. The main risks in surgery are damage to nerves or to blood vessels, because the area where the styloid processes are is a very cramped area, with the major blood vessels and many cranial nerves entering/ exiting the base of the skull.
Obviously damage to a blood vessel could cause blood loss or a stroke. Nerve damage can be difficult to avoid depending on the position of the styloid process, and even the position the head and neck have to be in for the surgery.
Some members have had damaged facial nerves (making it difficult to smile, or having a droopy eye), or speech can be affected temporarily.
Sometimes there can be partial tongue weakness, or the tongue can deviate to one side.
Other members have had problems with shoulder muscles and weakness because of nerve damage.
First Bite Syndrome seems to be quite common post-surgery, but this seems to ease with time.
People often ask will they be able to talk and swallow, and if they’ll notice any difference when the stylohyoid ligaments are removed- there doesn’t seem to be any difference, and as far as I’m aware no-one’s had any swallowing problems post-surgery, other than the initial pain post-op. Some people have asked the doctors about this, and the consensus seems to be that we can do without the styloid process and the ligaments.
Which doctors are the best to perform surgery?
Members Emma, heidemt and Christian22 have very kindly put together a list of doctors who are familiar with ES. These are not recommended doctors, but are ones members have named as having performed or been able to diagnose Eagle Syndrome.
Unfortunately for legal reasons on this site we can only publish positive reviews of doctors. Members can always private message other members for their private opinions.
If there are no doctors on the list in your area, heidemt suggested that it might possibly be worth looking through some of the research studies, and contacting the authors of those; for example several studies have been reported from India and Saudi Arabia.
Members have had successful surgeries with ENT’s, Skull Base / Otolaryngology surgeons, Vascular surgeons, Neurovascular surgeons and Oncology surgeons.
A doctor who has performed this surgery before is suggested, or at least a doctor who is used to operating in this tricky area.
The most important thing to clarify with a doctor is that they understand that as much of the styloid needs to be removed as possible- some members have had a small piece snapped off at the end, so are still in pain, and trying to find a doctor to operate again is not always easy.
(Some doctors believe if they take the styloid off to a ‘normal’ length, everything will be fine, but it can be that it’s the angle of the styloid which is the problem, not necessarily the length).
One surgeon broke the styloid into pieces and left the pieces in. This is NOT recommended and the member has had to have revision surgery.
One of the Ben’s Friends Moderators on the PsA site has published a guide- aimed at the UK members, but has useful tips for other members too- about your rights, advocating for/ empowering yourself etc.:
How to be a pushy patient: Want the best care? Here’s how to fight your corner -Posted by Jules G in A newbies Guide to PsA1
However, surgery isn’t right for everyone. Some members who’ve not opted for surgery have found treatments which help them- see Pain Relief, and Alternative Treatments sections.
Recovery from surgery:
Some members have felt relief instantly, others have taken a while for swelling to subside and for nerves to heal. Obviously recovery time and experience will be different depending on whether your surgery was external or intra-oral. Nerves can take 6 months to a year to gradually heal, so nerve pain may take a while to go. Vascular symptoms will often improve as soon as the swelling goes down, as long as the blood vessel returns to it’s normal size and doesn’t need a stent putting in.
Reply from Emma re recovery:
‘My ear pain and throat pain took more than 11 weeks to subside. My ear pain still comes and goes 2.5 years later. I think the ear pain is connected to acid reflux. The tightness from the intraoral surgery goes away with the normal chewing that you do eating. This took me about 6 months. During my recovery, I got nervous about not feeling better after 3 months. I made an apt. with one of the doctors on this site. He checked me out and said that my surgery was done very well, that most of my styloid was removed and the styloid that remained had been smoothed off and was not jagged. He told me to wait at least 9 months. Slowly, I returned to normal. So give it time and if you still have the same pain all the time try checking for TMJ or acid reflux or trigeminal neuralgia. The TMJ or acid reflux is easier to fix.’
I have only just been able to lie on the side I’ve had removed, because it would increase the nerve pain I have- it’s taken 6 months!
Immediately after surgery, it’s a good idea to try sleeping propped up if you can to ease swelling, to not overdo things, to take the prescribed medications, and to follow what your doctor has told you.
Several members have suggested asking for anti-emetics to help with nausea/ vomiting after surgery from the anaesthetic.
Suggestions to ease swelling are to keep propped up, use of steroids, or using ice packs. Some doctors put a drain in overnight to ease this.
It’s a good idea to be prepared to eat soft food or soups/ smoothies etc. for the first few days- longer if you’ve had intra-oral surgery- as chewing and opening your mouth can be difficult initially. It soon wears off though.
Several members have suffered with ‘first bite syndrome’ after surgery- when eating something you feel a sharp pain with the first mouthful- but usually this eases within a month.
The surgery site (if external) can get tight- use a massage oil for this, it will help.
Members have been told different things about returning to work/ exercising etc., so be guided by your own doctor, and get back in touch with them if you’re concerned about anything.
There have been quite a few discussions about post-op recovery- search in the discussions section for what to expect after surgery or recovery after surgery and it will come up with lots of info!
Here’s a couple of links to start you off- member ‘eaglewontbeatme’ had 2 successful surgeries and wrote detailed accounts of his experience:
If you’ve had long term nerve pain, there is some research which suggests that nerves can hold the memory of pain; Teaching the Nervous System to Forget Chronic Pain by Eleanor Nelson is an interesting article. (http://www.pbs.org/wgbh/nova/next/body/chronic-pain/)
What about having both sides operated on at once?
This question is asked occasionally- there are some doctors who are prepared to do bilateral surgery, but certainly the more experienced surgeons don’t, because of the risks of swelling in the throat.
The time varies between surgeries- some members have been told that they have to wait at least 3 months, others 6 months. There have been a couple of members who have had bilateral surgery and lived to tell the tale though!
Vascular ES post-surgery and stenting:
For those with vascular ES, usually surgery gives good results, if not immediately then once the swelling has gone down. However, occasionally post surgery the blood vessel which had been compressed may not open fully again, in which case stenting may be required.
There have been several discussions about this, as again different doctors have different views. Some doctors like to try and put a stent in first to see if that helps: ES experienced doctor in metro Detroit area? ,
but as sunlightandair commented, this may not always work: CT Angiogram + 3D Images - Potential Vascular Eagles
And in this research paper the authors conclude ‘Intracranial venous hypertension may result from extrinsic osseous compression of the jugular veins at the skull base. Although rare, this phenomenon is important to recognize because primary stenting not only is ineffective but also may actually exacerbate the outflow obstruction. The osseous impingement of the dominant jugular vein can be relieved via a decompressive styloidectomy, and the clinical results can be excellent.’ Styloidogenic jugular venous compression syndrome: diagnosis and treatment: case report by Dashti, Nakaji, Hu, Frei, Abla, Yao and Fiotrella.
My doctor also told me that having a stent put in doesn’t always work, and can sometimes leave the patient in pain, and as they cannot be removed once in, it should be considered carefully.
Can the styloid re-grow after surgery?
Sadly, the answer is, yes it can, although thankfully this isn’t very common. There have been a couple of members who have needed to have surgery again, including Ear_Mom’s son: Regrowth of styloid previously removed to skull base
I have found one reference to this in research- on Wikipedia ‘Regrown of the stylohyoid process and relapse are a common occurrence’- from the book Scully’s Medical Problems in Dentistry.
As there is research to show that the styloid process can keep growing as we age, and that calcification can continue (see ES Info Background section), it seems reasonable to presume that there could be re-growth, but this is rare.