Hello - I wont go down the list of all the doctors and specialists and medications and procedures that I have seen/tried over the last two years. In short, what started as a very sore throat with ear pain turned into many different diagnoses - none of which have helped my radiating ear pain / popping / crackling and daily headaches. The last ENT I saw landed on TMJ. I tried 4 different mouth appliances / botox / arthrocentesis - no improvement. I finally went to see a new dentist to have my bite checked out and he notice my styloid ligaments were calcified. I attached pics for reference. I saw an ENT at Vanderbilt today and he was dismissive that it is ES. So discouraging. I’m wait on my insurance company to approve the CTScan Dr Samji requires for consultation. Have others faced similar challenges?! I don’t know how much longer I can take this constant pain without understand what is going on. Is there anything that helps the pain?!?!
Firstly yes, others have had real struggles to get diagnosed, so you’re not alone, although that probably doesn’t help much! So frustrating when an ENT won’t listen…
I can’t see your pics, not sure what’s happened there, so can’t comment on those…
There are some possibilities for pain relief- either heat or cold can sometimes help. ES can aggravate the cranial nerves, especially the Trigeminal, Facial and Glossopharyngeal nerves, so can cause pain along the jaw, teeth, cheek, up the side of the face, ears & throat. There are medications which can help with nerve pain, like Gabapentin, Amitriptyline, Lyrica, Carbamazepine for example. Some people have found muscle relaxants like Baclofen help a bit. Also steroid/ lidocaine injections can be done into the tonsillar region which sometimes help. Sleeping slightly raised helped me too. There’s more detailed info in the Newbies Guide Section, here’s a link:
ES Information- Treatment: Pain Relief - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
I hope that you can get your scan done soon- there’s info in previous discussions as to what Dr Samji needs if you’ve not seen it:
CT neck non-contrast “styloid protocol”? - General - Living with Eagle
Hoping those loaded. Those are some of the images my dentist game me.
I have already been in contact with Dr Samji’s office. I’ve completed all forms and get my CTScan tomorrow. Hoping for a diagnosis soon.
Thank you for the images. I’m sorry I can’t quite tell what I’m looking at. When you get your CT scan, ask the radiology tech if they could please add some 3D images along w/ the slices as that will make it easier for you ,& for we who are novice CT scan readers, to know what we’re looking at. That said, we do have some members who are quite good at reading CT slices. Sadly, I’m not one of them.
I’m really glad you have your CT appt. tomorrow & are on your way to finding out what’s going on. If you don’t get any 3D images, that’s fine, too. There are free computer programs that can help create 3D images from CT slices so you can do it yourself.
I got my CTScan and package sent off to Dr Samji today. I am a little discouraged because my summary calls out no definitive elongation but look at the length noted. Ugh.
Please don’t be too concerned yet, @meregehrke. Dr. Samji asks for a copy of the scans so he can measure the styloids himself because often his measurements disagree significantly w/ those done by the radiologist who reads a given CT. I noticed your report made no comment about your stylohyoid ligaments. They can calcify separately from the styloid i.e. styloid length is normal but the stylohyoid ligaments can be calcified farther down the line. This is also considered ES & causes the same type of symptoms as elongated styloids. If Dr. S does agree that you don’t have ES, all is not lost. There are other experienced ES surgeons out your direction who may have different criteria for diagnosing ES so you could contact them.
Unfortunately, too many doctors look only at styloid length rather than other features like thickness, how curved, twisted, angled or pointed the styloids are. The presence of any of these physical features, even on a normal styloid, can create symptoms that make those styloid worthy of being removed. Additionally, I will say up front that Dr. Samji does not consider calcified ligaments to be ES, thus if that is your situation, we will help you find another surgeon who is willing to help with that situation.
Please let us know what you learn from Dr. Samji. If you get a chance to talk to him, ask him if you have any calcification on your s-h ligaments. That’s info that would be good for you to know.
Thank you!! This is encouraging. I appreciate your response! Ironically, I was still chasing TMJ when I went to a new dentist to have my bite checked and he immediately made comment that my ligaments were calcified from a panoramic XRay. I had never heard of Eagle Syndrome until he mentioned it. He performed a new MRI of my TMJ and said everything looked normal and my bite was good. He just did not feel any of my symptoms aligned with TMJ. This has been the first dentist to truly invest time in trying help me figure out what is going on. I have tried so many different treatments and appliances for TMJ and none have helped - not even a little. At this point I just hope that I get a chance to talk to Dr Samji. They said it is a 2 week waiting period once documents are received and I sent my packet overnight. We shall see and I will go from there.
Do you care to share the other doctors who I might consider looking into? I live in TN but willing to travel anywhere for help.
We are going on vacation next week and I am beginning to dread it bc of the constant pain and headaches. I have chased everything and no one has had answers yet - 2 years in.
I hope that Dr Samji can help you, it’s good that he does check the scans himself rather than rely on the radiologist’s report… Dr Hackman in NC has done quite a few surgeries recently, so he might be worth contacting if Dr Samji can’t help. Dr Bumpous in Kentucky has done surgeries in the past, not sure if he’s done any recently- you can search for info in past discussions on doctors. Otherwise lots of members have seen Dr Cognetti in PA as well, although worth checking if you do have any calcifications on your ligaments as one member thought he doesn’t remove them.
I hope that you’re able to enjoy your vacation despite the pain
Jules gave you the names of the doctors I would have recommended. I will add that Dr. Hackman in NC does calcified ligament removal so he would be a good option. One other doctor you could check with is Dr.Nuss in Baton Rouge, LA. He’s done surgery for several of our members who have all had good outcomes as far as I know. He can be hard to get a hold of though as it seems his office staff doesn’t know he does ES surgery so some members have had to see him for something else so they could talk to him directly about ES.
Good news - Dr Samji received my packet; reviewed it and they contacted me to schedule my surgery consultation by phone. I am scheduled for April 8th. I asked his assistant if scheduling of this consultation confirmed that I was a candidate for surgery and she said yes.
Hoping to get this started soon bc the pain has been very intense lately.
That’s FANTASTIC NEWS!! I’m celebrating w/ you, @meregehrke!!
Really good news, very pleased for you, will be praying
Congrats!!! You are on the right track. Samji did both sides for me and I generally had a very good experience.
How long after your consultation did Dr Samji schedule your surgery? How long ago did you complete your surgeries? Anything I should prepare for this initial consultation?
I had my surgeries w/ Dr. Samji in 11/14 & 8/15. My first surgery was scheduled about a month after my consult w/ him. I think it was similar for Snapple, but I’ll let her tell you for sure.
• Keep your symptoms discussion to the main symptoms that are bothering you. Getting into too much detail will not serve a useful purpose because he can’t say one way or the other if the more subtle symptoms will go away (though we’ve found here that many times they do). • • You can ask about rates of success in reducing/eliminating symptoms.
• How much styloid he removes & if he will take out any sections of calcified stylohyoid or stylomandibular ligament he sees.
• Since you have TMJ, it’s worth mentioning because part of Dr. Samji’s surgical approach requires him to move your jaw out of the way to access the styloid. He may be able to take precautions so your TMJ pain doesn’t flare up post op. That said, a number of our members have found that in reality, what they thought was TMJ pain was actually coming from the trigeminal nerve which had been irritated by ES so when the styloid(s) are removed that pain subsides over time.
Information about what to expect post op & recovery times are better detailed on this site than info a surgeon will give you because we have experienced ES first hand, & many of us have had surgery so can give more accurate info than what a surgeon knows. (Use the magnifying glass icon to search what to expect & surgery recovery).
He reviewed my CT scans within 3 weeks of mailing them Jan 2021, I then set up an in person consult since I live on west coast and it was a cheap flight down about 3 weeks later (Feb). I had my 1st surgery in May 2021. It was originally scheduled in April but COVID shut down surgeries for a short while as that was at the start of COVID and everything locking down. You can usually get on the surgery schedule within about 3 weeks of consult appt. My 2nd was Dec 2021.
I think Isaiah has covered it all for the most part and should be pretty straight forward. I do have TMJ and my 1st surgery really did kick up the TMJ which Dr. Samji warned me could happen. I waited a couple extra months to get the 2nd surgery because of it. The 2nd time, it did not kick it up but I do believe when he did the 1st side (my left), my left TMJ which is worse in general symptom wise, inflamed and flared up.
Looking back, I wish I had done the other side first. My styloid was longer on other side and that was his first choice. I was having so much pain on other side, i went for that first hoping to get relief. The more inflamed or state of your TMJ on the operating side might express itself more. Im not sure how much Dr. Samji can take a specific precautions to avoid this given the nature of the beast. If your under care of TMJ specialist, talk to them about potential for flair. I already had neurologist on board giving me steroid and botox injections in my jaw although I only got moderate relief. It took some time to calm down. If you have a bite appliance, use it religiously before and after surgery.
You will likely discuss case specific details with him. Probably the big one is which side to do first and why. Hope that helps
I had my consultation with Dr Samji today and my first surgery is scheduled for May 9th. We will travel to CA on May 5th for my pre-op appointment on the 6th. I must admit, I am a bit nervous. I really liked Dr Samji! He outlined all the risks which has me a little freaked out but I am choosing not to think about the risk. He did recommend I try 300mg of gabapentin before bed to see if it helps with any of my ear pain.
Have many suffered from first bite syndrome after surgery? If so, how long did it last? He said it could last up to one year.
I am excited to get this first surgery behind me. He said I might not see improvement until we do the second surgery in three months.