Our son had his surgery yesterday. He had a lymph node removed as well, we think to make it easier to access the styloid. His notes showed a prominent level 2A lymph node. Our experience with Dr. Annino and the medical team here was incredible. Dr. Annino said his styloid was long. Dr. Annino said this is rare for someone his age. He removed 5cm that was in one piece on the left side. It was measured at 5.8 thru a Cone CT scan prior to surgery that was conducted in MS. He also removed more small pieces and smoothed it out closer toward the skull base. We will see him for a post-op appointment next week. Our son said his tinnitus is better already, the feeling of a foreign object in his throat is not there, and the tightness in his shoulders and traps has not been noticeable as of yet. He is noticing some numbness, but according to what we have read and how medicine was administered, that is to be expected. He only has needed Tylenol for pain, thus far. They gave him Dilaudid right after surgery and other than that- he has not needed stronger pain meds. I am going to post a few photos including the styloid that was removed.
He has it on the right side also. (5.7cm). We will see how he feels after removing this one before proceeding with the other. The left side was more calcified and that is the one that needed to be tended to first.
Thank you for this group- your advice and tips for post op have proved to be invaluable. Here is hoping we can - thru his story -
Thank you so much for sharing how your son’s surgery went. So glad it was a great experience & those calcifications are now out. That is one exceedingly long styloid. I assume the second piece was a calcified section of stylohyoid or stylomandibular ligament.
I’m sorry he’s had this experience at such a young age, but as I’ve said before, his age is to his advantage because he’s likely to heal faster from the surgery. So great he’s only needed Tylenol for pain relief!!
Please be aware, that w/ bilateral ES, it’s hard to know which styloid is causing which symptoms. Some people have made the mistake of thinking the first surgery didn’t help because many symptoms remained which were being caused by the remaining styloid, even on the operated side. Also it’s not uncommon for symptoms that the remaining styloid is causing to start getting worse after the first surgery. This usually begins around 1-2 mos post op. I hope your son doesn’t need a second surgery, but I also want you to be aware of the signs showing that may be necessary.
That’s great news, good that he’s safely through surgery & has noticed some improvements. Just be prepared that recovery is up & down, so he may experience some setbacks, & not to be discouraged by this! Will keep praying
Thanks for Sharing. I am looking for someone who can make me the surgery but can get one in my country and in Spain neither and don’t have insurance. Suffering till the point I can not handle it any more.
Thank you so much for sharing this experience. It seems like information and experience in this area has improved quite a bit over that past 5 years, which is encouraging. How old is your son? (he looks like a teen!)
He is 18 years old. All the dentists and docs who have seen his scan are quite in shock of how calcified and long his were (1 is still in there). We opted to do one at a time- that is the only way Annino does it. We felt the side effects could be too much for him if it ended up being difficult. Plus, I was pleased with what we heard of our Doctor and saw of his work. Patients he treated seemed to have less trauma- so to speak, after surgery.
We are at a loss for how his started. He had a traumatic delivery- not the fault of the doc- I developed HELLP syndrome and he had to be delivered quite quickly by emergency c- section. To get him out, they had to do both a vertical and horizontal incision of my uterus. He was difficult to “get to” and doc had to have assistance- he was underneath my left ribs- probably due to there being very little amniotic fluid. We have wondered if this could have been the beginnings of his since he is so young and they are so calcified.
He also has had a tonsillectomy, adenoidectomy, and 3 sets of ear tubes. He first noticed the pain after his wisdom teeth were extracted about 2 years ago, but his dental x-rays show the styloids as early as 2018. His dentist just did not think much of it, because he was so young, and she did not know their extent.
So, all that said, we are open to research being done on his particular case- if it helps others. We are so thankful his was found early and we got the surgery before his pain and symptoms worsened.
I have a feeling we will be having the right side removed as soon as he heals up enough to tackle the other side.
There is so much we don’t know about what causes ES to onset. There are speculative causes which make sense in light of how our bodies function to strengthen & repair areas that it deems are weak & need greater support. This is usually accomplished by laying down calcification. Unfortunately, the extra calcification often causes pain & other problems. More common examples are bone spurs & arthritis.
We’ve had a couple of other parents who recently joined our forum with younger family members who’ve been diagnosed w/ ES. Hopefully they’ll post their stories soon. We also have several from the past.