Hi, I’m just over 5 months post op from right Styloidectomy at Cleveland Clinic by Head & Neck surgeon Dr. Danielle Bottalico. My surgery totally resolved my symptoms- which were many- immediately. I did have & have had some issues with First Bite Syndrome. At about 4 months post op I did begin to have weird nerve sensations in my nose on the left side. It felt numb and sometimes “gone” but bearable. I have my left styloid with is elongated & calcified but not as severe as right side was. And then face pressure in the center of my face began October 7th and has increased in intensity. Now I have bilateral jaw pain - teeth ache and hurt. I can no longer chew, talk, and my mouth, tongue & lips are completely numb. I have been told about crossover pain & symptoms but am surprised how rapidly this has progressed. The pain and face pressure is like someone has been stomping on my face for almost two months. Pain is worse with bending over or with lying down. Nothing helps with pain. I cannot eat without choking and biting my tongue and cheeks and am drinking broths & protein shakes. Liquids dribble out of my mouth because I cannot feel or navigate them with my tongue. My surgeon says this face pressure isn’t an Eagle Syndrome symptom??? Has anyone else experienced the numbness of the entire mouth? I can swallow- no pain in throat other than the muscles that swallowing uses - the muscle movement just hurts my face. My jaws feel like someone is stabbing them with ice picks, which is what my right jaw felt like before my right Styloidectomy. I am surprised that my left ligament is causing so much bilateral pain. I have gotten in with my surgeon December 3 instead of January 22 for my 6 month recheck. I am afraid she’ll refuse surgery because my left ligament was just shy of 3 cm; but it is definitely causing symptoms. I have seen every specialist and had multiple MRI’s and CT’s prior to my Eagle Syndrome diagnosis last April. Nothing else was found and fortunately my dentist found the Eagle Syndrome. Has anyone else had a second surgery with a shorter ligament wreaking havoc? I was doing so well, and am now reduced to a weak and miserable person once again. Praying my surgeon who has been my hero will agree to remove the left ligament. Thank you for any information anyone has out there. 
@Suzygrace - Sometimes a surgeon doesn’t take enough off a styloid during a styloidectomy or a sharp edge is left where the styloid is cut off & not smoothed out. Did Dr. Bottalico tell you how much styloid she left behind (1 -1.5 cm is ideal) & whether or not she smoothed off the cut end of the remaining bit of styloid? When too little styloid is removed, symptoms can disappear initially but then return. Alternatively, the angle, thickness, curve, etc., instead of length of the remaining styloid could be what’s causing the nerve symptoms you have.
You could request a follow-up CT scan w/ contrast to see the condition of your right styloid & revisit the left one to see if it’s grown more. Another option is to request a FIESTA or CISS MRI to specifically look at your hypoglossal, glossopharyngeal & trigeminal nerves in the areas where you’re most symptomatic as that type of scan shows nerves & the cause of their distress can often be determined.
I’m really sorry for the setback you’ve had & am glad you have an appt w/ Dr. B coming up soon. Don’t let her dismiss you regarding a second styloidectomy just because your styloid isn’t super long & because you have recurrent symptoms on the right. Discuss the things I’ve mentioned above with her to get her opinion.
Oh no, poor you, that sounds grim especially having done so well after your surgery! Another CT scan as @Isaiah_40_31 suggests might be helpful, to see if the other side has calcified more, & to see how much was left after your first surgery. There could be scar tissue forming otherwise from your first surgery, that can happen occasionally. We’ve had some discussions about that & cold laser therapy has been mentioned as helping if there is scar tissue. Do you have any of your original imaging before your first surgery? If you have some & want to upload it we could have a look? Sometimes the styloids & ligaments aren’t measured very accurately!
Sending you a hug & thinking of you, hope you can get the second surgery… 
Good morning
After my first surgery, I had some of the same symptoms for some time: numbness on my face, chocking, biting my tongue, and I still can’t wink on my right side. Aside I had other symptoms. I was unable to taste food for two years, chew, high sensitivity to lemons, fruits, only able to taste corn. I was told by a doctor from Italy that those symptoms with food were common Zinc deficiencies, therefore the reason that people with colds can’t smell.
I was in four small dosages 10 mg of elemental Zinc a day (to avoid nausea related with elemental Zinc in dosages of 10 mg or more), and a Zinc ionophore (HCQ or Hydroxychloroquine). I almost immediately recovered my sense of taste. This protocol also helped as an inflammatory. I am still in it minus the zinc.
@HannahM - Thank you for that information about zinc. Very interesting!
Did you ever have a second styloidectomy? I’m sorry if you’ve told us & I forgot.
No. I didn’t have my second (left) surgery. However, I had a complication around October. I’ve been careful not to lift weights as I knew that exacerbates/upsets my ES symptoms.
Around October, I lost my sense of hearing on the left side and I have not recover from it yet.
However, I’ve been in a protocol with moderate dosages of K2, diet, and other medicines.
The second medicine did help. My back pain is gone. I was very hesitant of this treatment but it appears to be working.
Since and in comparison, (with CT scans from past years), a recent visit to the emergency room at GBMC (Greater Baltimore —Dr. Frankel at the emergency room there is super amazing), the CT shows my (L) stylo is now smaller in size.
I am on a diet (micro-greens, Kale, Broccoli, lean grass fed protein, K2 (vegan) from cabbage/kimchi (Korean) ), and this new (re-purposed) medication.
@HannahM - I lost hearing in my left ear due to my left styloid squashing my internal jugular vein against my C1 vertebra. It went undiagnosed for 6 years. I finally had IJV decompression & a revision left styloidectomy 9 years after the hearing loss started. Unfortunately my hearing wasn’t restored, but the upside is that the surgery has stopped the progression of my hearing loss.
I hope this gives you some food for thought. Dr. Costantino in NY specifically does ES surgery with IJV decompression. If you decide to investigate that angle for your hearing loss, he’d be a good starting point for a consult.
What about Dr. Hackman? I’m working out of DC now
Dr. Hackman doesn’t specifically do IJV decompression surgeries. If the compression is caused predominantly by the styloid & not C1, then the styloidectomy he does will help reduce or end the IJV compression, however, if C1 is a more significant player, often part of its transverse process needs to be shaved, & that’s something Dr. Hackman doesn’t do. Dr. Costantino works together w/ Dr. Tobias, a neurosurgeon, who shaves C1 after Dr. Costantino has done the styloidectomy & removed any soft tissue compressors of C1.
I assume it’s been a couple of years since you had a CT scan. The best way to see if you have IJV compression is to get an updated CT w/ contrast to see if your left styloid has grown further & to get a look at your IJVs & carotids. Based on the outcome of that scan, you can decide who would be best to see for surgery.
Thank you. Thank you for everything. I had a CT scan last year and a month ago. I want an intra oral surgery. I don’t want a dissection. I know intra oral is dangerous… but I read that the new robotic tech is promising.
The robotic intra-oral surgical method does seem to be able to remove more of the styloid from what we’ve heard, but we don’t know of many members who’ve had surgery this way… Is there a reason you don’t want external? Most surgeons put the incision in the crease of the neck so you won’t have a visible scar.
I had four kids under age when my husband died suddenly. Two years later, my kids and I were on a thanksgiving vacation when I went into surgery at northwestern University in Chicago under Dr. Bove. I went into bleed control. I have been told that I had to be revived a few times. I recall some details before going unconscious. I quietly did take a picture of the nurse who was angry, upset and told the hospital. It was his first day at work . Recently, I learned that NW Hospital had lied to me. I never had Eagle Syndrome surgery in 2015.
I’m a single parent. My kids need me as a parent. I can’t play games even when I was almost silenced and killed that day. My kids were so little.
That’s awful, I’m so sorry that you’ve lost your husband and went through that , hugs for you, you must be very strong
@HannahM - I’m very sorry that your first ES surgery didn’t achieve the end it was supposed to & that you had a near fatal experience. That is very scary!!
It’s been 10 years since that happened & based on the outcomes we’ve seen among our members, ES surgerical procedures have improved since then. Besides that, the doctors we had on our list 10 years ago who are still doing styloidectomies have 10 years more experience.
My concern is that your hearing loss may point to IJV compression, & if that is a problem you have, just having your styloids resected may not help restore your hearing or stop the progression of your hearing loss.
Since you’ve had a recent CT scan, would you be willing to convert the images to 3D using either radiantviewer.com (for PCs) or Bee Dicom Viewer App (for Macs) & posting some images on the forum for us to look at? You can also ask whomever you consult with next about ES whether that’s something that (s)he sees in your recent imaging. Dr. Hackman would be able to give you that information. He’s done a tremendous number of bilateral styloidectomies very successfully so would be a good person for you to consult with if you’re steadfast about having intraoral surgery.
That’s the dr that I’m seeing in January. I’m so relieved that my cervical chiropractor found out what was happening to me! I have seen dr Carol in Erie. But I wasn’t really confident in what he was saying at the appointment. He said a few things that contradicted the literature that Cleveland has on their site. Has anyone had him do their surgery? What’s your opinion on the dr you saw at Cleveland? How long did it take for you from your first appointment to actually having the surgery?
We don’t have Dr. Carol on our Doctors List & I just did a search to see if his name has been mentioned on our forum & didn’t find anything. That most likely means that none of our members have had an ES consult or surgery with him.
It looks like @Suzygrace is the only member we have who’s had ES surgery with Dr. Bottalico.