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 -
help someone else.
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.
Best wishes for a speedy recovery.
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.
I am so happy your son safety has surgery behind him and has already noticed improvements. From what I hear, make sure he takes recovery slowly.
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.
18😭 started having issues 2 years ago.
Our son has felt great until yesterday. He felt some nerve stuff prior- but it was short lived. Yesterday, however, he said he had pain behind his right eye. It moved to the left today. He took a Tylenol and said it felt better. I am hoping it was just due to sinus and barometric pressure.
Quick question, he said the jaw, throat, and ear pain is better- but his shoulder pain is there and his trapezius area and scapula area still feels tight. He said he moved his shoulders and back a bit this morning and it popped a ton.
Have people exhibited symptoms like that with ES? His right side of definitely long. It measured 5.8 cm. We do not know if it is wrapped with nerves or not.
Should we have a CT with contrast before pursuing surgery to the other side. Dr. Annino said to wait on the right side and see how having the left being removed affects him. He is happy to do the removal of the other side if symptoms persist, but I just do not know.
Our son is not convinced that ES could cause this type of issue in his upper back and shoulders. I told him I thought it could- he is not convinced.
All I know to do is request an MRI or something like that to rule out something else. Thank you for your help!
By the way, we have requested all our dental Pan X-rays. My husband’s styloids were visible, one on our daughter’s was, one on our 16 year old was, my adopted daughter’s were not visible at all, neither were mine. Our 23 year old’s does not seem visible either. I will post them for your enjoyment. Just researching the possibility of genetics/ heredity.
In answer to your quick question, ES symptoms do include eye pain. My left styloid was much longer than my right & one of my left sided symptoms was pressure/pain behind my left eye. It felt like my eye was being pushed out from behind & was so bad some days, I would look in the mirror to see if my eye was bulging out. That feeling was gone when I awoke from surgery when my left styloid was removed.
Shoulder pain can be another symptom of ES because the accessory nerve is often irritated by an elongated styloid. I also had shoulder pain which radiated from my neck through my collar bones & into my shoulders. The accessory nerve runs through the SCM muscle in the neck & into the trapezius muscle: Two Minutes of Anatomy: Spinal Accessory Nerve - YouTube
Another interesting YouTube video (there’s one for each cranial nerve) is: 2-Minute Neuroscience: Accessory Nerve (Cranial Nerve XI) - YouTube
Getting further scans is unnecessary as they won’t be helpful for Dr. Annino & will only subject your son to more radiation (CT scan), & MRIs won’t show nerves unless you get a very specialized one called a neurogram which is done on a FIESTA MRI machine. There aren’t many of these in the US. I feel strongly that after having the right styloid removed, the symptoms your son is exhibiting on the right will go away.
Interesting that you’ve noticed potential elongated styloids in other family members. We have several other members who have been diagnosed w/ ES then have found that one or more of their children have it which has led us to believe that, in some families, there may be a hereditary component to ES.
I agree with @Isaiah_40_31 that the nerves she mentions can cause pain, in addition the Trigeminal nerve does have a branch which goes over the eye which can cause pain, it’s often affected by ES. We’ve had lots of discussions about tight muscles in the shoulder, neck & upper back which can also be painful due to ES; not always nerve related but because of the pain/ muscle tension/ more pain cycle and perhaps poor posture, it does seem to be quite common and it can take a while for these muscles to settle after surgery. Physio might be helpful once your son has healed post surgery. If you have time you can have a search of the past discussions, @vdm has posted lots of info about anatomy.
I’m glad that your son has seen improvements since the surgery!
The whole hereditary issue is interesting!