Hi there - our 18 year old son has been diagnosed with ES - he also is hypermobile. We are now beginning the process of meeting with doctors to discuss the treatment options/surgery. The doctors we are most interested in ( Dr. Hepworth, Dr. Costantino) we can’t see until later this spring/summer. However we are meeting with some local doctors that were recommended by our specialist to begin gaining the knowledge we need to be fully ready when we do get the chance to meet with the preferred doctors later this year. I am building a document with our questions. I looked for something similar on the site but haven’t found one. Can anyone either add to our list or point me to the site if such a list already exists?
Condition:
□ Are there any nonsurgical treatment options for Eagle Syndrome that we should be considering?
□ Is there additional diagnostic testing our son should have done to confirm the diagnosis or determine the proper course of treatment?
□ What else should we know about the condition or the treatment that we haven’t asked about?
Doctor’s experience/approach:
□ How many cases of Eagle Syndrome does the doctor deal with each year and over their entire tenure
□ What is the doctor’s success rate with Eagle Syndrome surgery?
□ How far out is the doctor scheduling surgery?
□ What is the doctor’s success rate with Eagle Syndrome surgery?
□ How far out is the doctor scheduling surgery?
□ Does the doctor recommend/use Intraoral approach or Extraoral (transcervical) approach.
□ Is the doctor familiar with Ehlers Dahler’s or hypermobility
□ How does the doctor consider vascular or nerve complications along with Eagle Syndrome.
□ If both left and right side are affected, do you treat them at the same time or do you treat them one after the other?
□ Are you familiar w/ ES causing IJV compression or TOS? (If yes) How do you help to resolve the problem surgically?
□ How short do you cut the styloids? [back to the skull base, if possible, is the answer we’d like to hear]
□ Do you remove the stylohyoid ligaments if calcified (sometimes the stylomandibular ligaments
Surgery:
□ What are the side effects or likely complications of Eagle Syndrome surgery?
□ In your experience, how much symptom relief can I expect?
What is the recovery process? (PT? Rest? Something else?)
□ What medications does the doctor prescribe for post-surgery
□ What is the recovery timeline?
□ Can Eagle Syndrome recur?
□ If so, how common is recurrence?
□ Are there steps to prevent recurrence?
□ What are the signs of recurrence so it can be addressed early if it happens?
Specific questions related to our son’s hypermobility and treatments:
□ How does the Eagle Syndrome relate to our son’s issues with TMJ and/or spine misalignment
□ Can you tell if our son has calcified stylohyoid ligament versus an elongated styloid?
□ What are the measurements of the stylohyoids and hos does that compare to “normal)
□ He only experiences symptoms on the left side – is his right side effected as well?
□ Is Eagle Syndrome the cause (or a partial cause) of the arm pain, or is this likely a complication from the ulnar nerve surgery or TOS (Thoracic Outlet Syndrome)? Is it possible it is caused by compression of the internal jugular vein (IJV)
□ If Eagle Syndrome is a cause of the arm pain, would surgery to correct Eagle Syndrome improve the arm pain?
□ Should our son complete the treatment for TMJ and misalignment of his cervical spine before having surgery for Eagle Syndrome?
Hi & welcome!
Firstly we do have an updated list of doctors who have performed successful surgeries; here’s a link: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
There’s lots of info in the Newbies Guide Section about treatments & surgery which might help you, here’s a link to that: Latest Welcome/Newbies Guide to Eagle Syndrome topics - Living with Eagle
There should be info about what questions to ask the doctors re surgery in there, although Dr Hepworth & Dr Constantino are very experienced so some of the questions won’t be relevant…
Some members have found that steroid injections/ lidocaine injections into the tonsillar region help, although they don’t always help. That’s something a local doctor might be able to help with while you wait to see Dr C or Dr H. There’s info about other pain relief options in the Newbies Section.
If your son’s not had a CT of the head and neck then as that shows the styloids best it might be an idea to get it done. If vascular ES is suspected then we suggest a CT with contrast, but if he doesn’t have vascular symptoms then there’s no point getting another scan as it’s more radiation etc. There’s info about common symptoms & vascular ES in the Newbies Guide again, briefly dizziness, pain in the eye, off-balance feeling, head and ear pressure, brain fog are the common symptoms which might indicate a blood vessel is being compressed.
There are risks with the surgery, like any surgery, which could be damage to a blood vessel or nerves, or an infection, but the doctors you’ve mentioned are very experienced so that minimizes the risk. Nerves can take months to heal, even up to a year, so recovery isn’t always instant. Swelling can be an issue with this surgery, so many doctors prescribe a steroid, or some put a drain in overnight, and icing regularly after surgery helps, as does sleeping semi-upright.
Some members had PT afterwards, it depends on how muscles have been affected before surgery and if there are any issues afterwards- like weakness in facial muscles if the facial nerve has been irritated, or shoulder/ arm muscles if the accessory nerve has been affected. These are usually only temporary, there are lots of post-op stories you can search for a read up on beforehand so you know what to expect!
Lifting and other manual jobs should be avoided after surgery, it’s likely that your son will be tired afterwards. Chewing and opening the mouth wide are often difficult after surgery so smoothies & soft foods might be needed for a week or two. Driving can also be difficult for a couple of weeks as head turning can be uncomfortable.
The styloids can grow back, it’s rare but does occasionally happen. The more than can be removed the better, so if they’re taken back to skull base it’s less likely. Both Dr H & Dr C should remove as much as is safe to do so. As your son is young it could possibly make it more likely they’ll re-grow; one of our youngest members was 14 I think & his did grow back quite quickly so he had to have another surgery.(His mother posted on here & wrote a book about their experience, I think it’s called Joining The Dots, by Sherri Jonas)
With hypermobility, we’re seeing quite a few members now with EDS and ES; there have been some discussions which you could use the search function for. It’s possible that the styloids grow longer to help stabilise the neck but this isn’t proven yet.
A CT will show the styloids, but it’s not always clear if it’s elongated styloids or a calcified stylo-hyoid ligament on a CT unless there’s a clear gap. And really it doesn’t matter as long as all calcified sections are removed; that’s something to ask about before surgery.
Arm pain can be a symptom of ES is the accessory nerve is being irritated, but you’d have to see if it resolved after surgery to know unfortunately. Is TOS is confirmed as well? We’ve had a few members with both; sometimes surgery for one has helped the symptoms of the other, but some members have had to have surgery for both. Again, it’s not known which condition is the cause of which symptom until surgery is done, sorry! If the IJV is compressed by the styloid is doesn’t usually cause arm pain.
What order to treat and/ or have surgery in is a dilemma; sometimes the jaw needs to be partially dislocated for surgery which could obviously exacerbate TMJD symptoms. But we have had a few members who have found that jaw symptoms improve after the surgery, and also that their jaw is aligned differently afterwards. (So if you were to opt for ES surgery it’s not worth spending alot on a mouth guard beforehand).
If your son’s spine is very misaligned, it might be worth looking at getting that treated first, as if it improves then it’s possible it could shift the position of the styloids so that they don’t cause symptoms? But that would be something you’d be best to talk to your son’s doctors about to take their advice. @Snapple2020 and @PatientD have posted good info about hypermobility, so you could search for their posts and maybe they’ll see your discussion and reply too.
Hope this helps!