Losing my wits!

Hello everyone,

Brief History- I was diagnosed with ES about 4/5ish years ago when i yawned one morning felt a pop, and could not swallow for 3 weeks. I luckily was already seeing an ENT/Head and Neck surgeon who was very familiar and skilled with ES ( but was out of the country whilst i suffered). 2 years ago the other side flared up ( the right) and my very skilled surgeon had just left my healthcare system- ( that i am also employed through so I cannot seek him out now)- My current ENT/ Head and neck surgeon worked directly with him, and trained him. I am his 3rd ES patient here in Portland Oregon.
Here we are now- my right side is KILLING me- my current ENT refuses to believe styloids can grow back, refuses to answer is there has been grown- I had a CT ordered by primary care due to right sided neck swelling that is obvious once examined. Pain is rapidly progressing. we all know the misery, the depression, the questing if we are going crazy- is it in our heads right?
Primary care was concerned i had cancer or something (thankfully my lymph nodes where normal), but has anyone had a recurrence of symptoms with nick swelling, palpable swelling to the lymph nodes in the neck? perhaps scar tissue complications?
also the right side during surgery was so TIGHTLY affixed to my hyiod , once released it made a loud pop- and apparently tried to shoot out of my throat… nice right.

Your current ENT is wrong. There are several cases on this forum of styloid regrowth & subsequent follow-up surgeries. Here is a post made by Ear_Mom that will be helpful for your case:

This case involved her young teenage son who initially had his styloids removed to the skull base & yet they regrew. There are other adults on this site who’ve had regrowth but several of those only had their styloids shortened not fully removed to the skull base. Ear_Mom has written a book - Connecting the Dots - which chronicles her son’s health journey. It’s a quick read & very informational. It’s available on Amazon.

Swollen lymph nodes & even local neck swelling are not typical ES symptoms but are also not unheard of. Scar tissue is a possibility but a CT scan to check for styloid regrowth would answer the BIG question.

Are you taking any calcium supplements ? or does your diet contain foods with more calcium? because I remember that 6months prior to my ES , I used to take lot of milk. Like 500ml once morning and also at night. I continued this for 6 months or even more than that. apart from the milk , other foods that I take could also have had calcium in it , adding oil to fire.

My guess it that , taking more calcium could result is regrowth of the styloids as it is also a bone.

i have been on and off calcium/ vit d supplements high dose after a few operations to rebuild my ankle- I don’t do dairy- interesting though I didn’t think about the connection!

why is it so difficult for a doctor to admit they may be wrong- I have an appointment with him on the18th. we have been emailing back and forth- but his emails are short- and he will not answer my question- I have specifically asked him to read my CT himself and look for any growth…any abundance of scar tissue? anything to explain the return of symptoms NOW- writes back 2 days and asks - oh can you send me a picture and point to where it hurts… 2 days later… that picture looks low on your neck…send another… no response…I have read ear_mom’s stories/posts, does anyone know if her son’s case has been published yet? or any regrowth cases that are medically published?

Sorry to say I don’t know of any med articles that have documented styloid regrowth.The surgeon who did Ear_Mom’s son’s surgeries is listed in the US ES Doctors’ List on this site (click on the gray HOME tab at the top of this page & you’ll find the list). His surgeon was Dr. Jason Newman, Neurologist at U of Penn Med Ctr. There isn’t much in the way of contact info but you can most likely Google his name to get contact info. He did 4 styloidectomies (2 on each side) on her son & can testify to the fact regrowth does occur. I know it’s a long shot, but he would be a legitimate person for you to refer your ENT to.

My initial ES pain was mid-neck in the area of my thyroid. It turned out to be referred pain as I eventually found a lump under my jaw that I thought was an irritated salivary gland but turned out to be my left styloid process. When I poked the styloid lump, it was my neck that hurt. Therefore, I postulate that the location of the pain doesn’t necessarily directly point to an elongated styloid. There are many people on this site who have severe shoulder pain because their styloid(s) are pressing on a cranial nerve that ennervates the shoulder. What doctor would diagnose ES based on shoulder pain? Sadly, most doctors haven’t experienced ES themselves, & thus are unable to conceive of symptoms “outside of the box” of symptoms they’ve read about. Though there are a subset of symptoms that are common to ES, it seems every individual who suffers from ES also has some symptoms that are uniquely his/her own. It’s these that the docs tend to dismiss, yet once surgery is performed, those oddball symptoms often disappear w/ the styloid(s).

A new CT scan is necessary to determine whether or not your styloid has regrown & even if it’s not excessively long, it could be very thick or curving at a strange angle & causing trouble. There are several factors besides length to consider. I don’t think CT scans show soft tissue so if the problem is a scar tissue build up, you may need to get an MRI. Please talk to your doctor about this.

Agree with Isaiah’s post- best of luck to you & hope that you get some help soon…