Was diagnosed with eagles 30 years ago but I left it alone for 15 years till the pain got out of hand. Had surgery to remove the styloid in 2011.
Went great no issue and the pain was gone. About a year ago I started having pain again but more on the neck and I noticed my hearing and voice changing. The something in my throat seemed to return as well. Had X-rays then a ct scan which showed the return of eagle syndrome. I struggling to find anyone who’s had it twice and it’s not the bone grown back it’s a calcified ligament that’s causing my issue.
Welcome to our forum @Scott1! You had your ES surgery the year this forum was started! I’m sorry your symptoms have returned, & you now have a calcified stylohyoid ligament causing troubles.
We’ve had members over the years who’ve had styloid regrowth. This has usually occurred when not enough styloid was removed i.e. the tip was clipped off or the styloids were only shortened to normal length. It has since been found that having an elongated styloid resected as close to the skull base as possible & removing the stylohyoid ligament as well are the keys to preventing regrowth or re-calcification. The most experienced doctors do try to remove the styloids to w/in 0.5 - 1 cm of the skull base now and a few cut it off even closer than that if possible. The challenge of a skull base removal is that the facial nerve exits the skull very close to the point where the styloid is attached, thus not injuring that nerve is the limiting factor in a true skull base resection.
You can use the magnifying glass icon in the upper right of this page to search for posts about styloid regrowth. Just use the word “regrowth” for your search term & posts where that is discussed will come up.
Dr. Hackman in Chapel Hill, NC, is one of the more experienced ES surgeons on our Doctors List. He would be a good doctor to have a consult with about your current situation.
•Dr. Trevor Hackman, UNC Ear, Nose and Throat Oncology Clinic – in the N.C. Cancer Hospital, 101 Manning Drive, Chapel Hill, NC 27514, (984) 974-6484
It is more common for the styloid process to grow back, but two of the causes of ES are tonsillectomy and neck trauma- it’s thought that the inflammation can cause the body to lay down calcification, so I guess it’s possible that after your first surgery this is what your body has done. There are other causes though, like metabolic disorders, some people have calcifications in other areas… And we’ve also had some members who’ve not had enough of their styloid processes removed, and this has caused re-growth, also some whose doctors have detached the ligaments leaving calcified sections still there.
Dr Hackman would be a good bet as your original surgeon isn’t doing surgery any more…
So I just met with a new Dr here in Greenville and he confirmed that it had indeed returned. I am not sure if the original surgeon did not just shave the styloid and not remove it but either way it’s back where it was pre surgery. The plan is to do some physical therapy to reduce the inflammation to see if that will lessen the issues but the only other thing to do is surgery again. This doctor does not recommend completely removing it and his reason was the risk is not worth the reward. I would love to hear others opinions of this. I had hoped to hold off till February when Medicare kicks in but I’m not sure I can make that or not.
Anyway at least I now have some idea and a semi plan on how to at least relieve the issue. Plus a huge win for me is finding this site and all of you.
If you do have physical therapy, please make sure the therapist understands ES, as some movements/ exercises etc could actually cause harm. It’s nothing something which helps very often though, to be honest…
I disagree with the doctor you’ve seen (and so do research papers!), the more of the styloid that is removed, the better the outcomes. If the styloid process is very close to nerves, then sometimes it can’t be taken right back to the skull base, but the experienced surgeons can monitor nerves and are able to remove most of the styloid. Just shortening the process might not be enough to resolve your symptoms… We do have a list of questions we suggest you ask your doctor if you see him again:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
If you’re able to , we would advise you get a second opinion from a doctor with more experience, Dr Hackman for example.
I asked a few of these today for example he’s done 3 of these surgeries and all were to this point successful. He said he prefers to go through the mouth but I’m Not a fan of that idea. It just seems not to be a good idea to do it that way. He said less invasive and he only does it that way if he can feel it through the mouth while I’m under. I will keep this list of questions and submit them to him for his replies.
On a side note man that camera and his poking around inside my throat has my neck screaming today.
@Scott1 - I completely agree w/ what @Jules said regarding having as much styloid removed as possible to get the best long-term results. We’ve had members who’ve had only partial styloidectomies & even w/o regrowth, a number have had symptoms return some months after surgery so they pursued revision surgeries w/ a doctor who would remove the styloid as close to skull base as possible. Dr. Hackman is able to successfully cut styloids down to 0.5-1cm which is very short.
This is a very common response to poking & prodding by doctors to feel elongated styloids. Interesting that he used a camera instead of his finger. It’s more common for doctors to stick a finger down the patient’s throat. Either way, the post pain can be terrible since the nerves the styloid are poking are further irritated by an exam. Ice your neck tonight & tomorrow - 15 min. on w/ a thin cloth between ice pack & skin to prevent ice burns. Do this several times over the course of the day. Another thing you could try are OTC lidocaine patches (5%) or Rx lidocaine patches (10%) applied to your neck. These have been very helpful in reducing pain for a number of our members. If you want to go more “hard core” you can request an Rx for a nerve pain medication such as Gabapentin, Amitriptyline, or Carbamazepine from your PCP. These can take several weeks to begin helping & they do have side effects so starting low dose & gradually working up to an effective dose is best.
Ah, that’s rotten that you’re in pain today… We’ve had lots of discussions about surgery through the mouth, and if this is the way he usually does the surgery it explains why he said that he doesn’t shorten the styloid close to the skull base. Intra-oral surgery is harder for doctors to see the nerves and blood vessels, they’re not able to shorten the styloid safely as close to the skull base as with external surgery. There’s also more risk of infections, and it’s a more painful surgery…
I iced it and the doctor did both he used. A camera and stuck his darn fingers down my throat! whew what a drag. I feel much better today. I sent him a message asking a few of the questions and I was pleased with his answers.
I’m going to try to tough it out till February for Medicare to kick in but not sure I will make it that long. I start some PT for my neck Tuesday and will post how or if it helps any.
I can’t remember if @Jules mentioned this, but you need to be VERY careful w/ PT when you have an elongated styloid or two as a PT not familiar w/ ES can prescribe exercises that will cause more damage/pain. If what you’re asked to do does stimulate pain, don’t try to push through it. Be wise & tell the PT, “I can’t do that exercise.” Pain is not gain when it comes to PT for ES.
I hope you can find the right combination of PT, icing, pain med/nerve pain meds, etc., to hold you until Feb. If you decide to see one of the more popular surgeons on our Doctors List, it would be wise to get your consult & surgery set up now as waiting till closer to Feb will mean waiting many more months beyond Feb. for your appointments.
My thought was give PT a visit or two and see what the have to offer. Dr said he thought since he could not feel the styloid through my mouth some of my issues might be muscle and PT could help that. I’m in complete agreement that I will not push it since it’s moderate pain now andi could manage it till February as it stands now. I am reaching out to the surgeon In NC Monday and seeing if I can get an appointment to consult with them and make a plan.
Again thank you all for the advise it’s so helpful and I for one listen and incorporate as much as I can.
You’ve made a good plan all the way around @Scott1. Please make sure to request being added to Dr. Hackman’s cancellation list if your appointment is scheduled out a ways. We’ve had several members get in with him much sooner than expected that way.