My first post and I have a lot to say but I will try to keep it short. I had a cholesteatoma removed from my left ear in 1998. Since then no problems except very slight nerve damage from that ear surgery. The left side of my tongue would tingle if I stuck my finger in that ear to itch it. I never had any ear infections or problems after 1998. Move forward to October 2019 One day I started having tingling on left side of tongue and ear pain. It was not an ear infection. I thought for sure I had a regrowth of a cholesteatoma because the back left side of my tongue was numb and tingling even if I was not itching or touching my ear. I felt like I had bumblebees inside my tongue. Really hard to describe. And the ear pain was sharp and piercing at times. I’ll skip a bunch just to let you know I had CT head no contrast 2019 and MRI brain July 2020. I have been diagnosed with multiple wrong things including trigeminal neuralgia, migraines, TMJ, and musculoskeletal strain. I have been to a PCP, 4 ENTs and and a neuro because I was having a lot of facial numbness and tingling all up the left side of my face. Even partially across my forehead and my nose. Finally the fourth ENT that I just saw February 8, 2021 told me I have eagle syndrome. I also have a lot of damage in my mastoid area from chronic calcification. I have a severely retracted left eardrum. He believes my eardrum is so compressed that it’s pressing on some of my cranial nerves and causing some of my tingling issues. He does not think tubes in the ear will work because it’s too flat. He said I need mastoidectomy. He told me I have eagle syndrome but did not talk about it. He literally just told me it meant the styloid bone was too long. He blew the styloid issue off and basically just said will cut that off. I felt like he didn’t talk much about it because he acted to me like it was a simple no big deal type of thing. I left feeling relieved I had answers for my ear problem and pain. I’ve been having severe neck pain the past several months and facial numbness and tingling. I’ve also had the sensation of something stuck in my throat since July 2020. I have been treated for Gerd and I’m on Prilosec 40 mg twice a day. I’m not denying the fact I had Gerd but my primary care and one of my ENTs has tried to blame a lot of my symptoms on Gerd and I could tell something more than that had to be wrong. The gerd was diagnosed by a laryngoscopy and specifically told me it was LPR laryngopharyngeal reflux.
Back to this week. So a couple of days after leaving this ENT this past Monday I started reading about eagle syndrome and now I feel pretty confident that a lot of my symptoms are actually from eagle syndrome and not just the mastoid and retracted eardrum.
The ENT I just saw did not mention any other testing. He is going off of a CT scan from November 2019. He literally just told me to call when I was ready to schedule for surgery that he did not need to see me again. After reading on this group it looks like a lot of you have had scans of your neck prior to surgery to check status of nerve and vessel compression.
I guess I have a lot of questions but one of them is I don’t know if I should have both surgeries together or not and I think that’s his plan. I definitely would not call and schedule a surgery without talking to him again. What are your opinions?
**Sorry I guess this wasn’t short. I tried.
Hi & welcome to the forum!
You’ve had a long journey! I’ll be honest, I don’t know a huge amount about mastoidectomy & retracted ear drums…but many of your symptoms do sound like they could be down to ES; the TN, migraines, the numbness & tingling in your face, neck pain & feeling of something stuck in your throat etc.
A CT scan is the best way to diagnose ES; do you have the results of that yourself? As you’ve had one not that long ago it may not be necessary to have another one- usually people only have one if it’s been a while since their last one, & a CT with contrast is good if you have vascular symptoms, like dizziness, fainting, head & ear pressure. Nerve compression isn’t easily seen from any scans except specialist MRI scans which aren’t often done.
Before having surgery with this ENT, there are quite a few questions to ask:
Has he performed this surgery before?
Usually we’d suggest finding out if the surgery is external or intra-oral, but I guess it would be external because of the other surgery at the same time.
How much of the styloid process would he remove? As much as possible is best, preferably right back to skull base, to get the best results.
Also check that any remaining styloid is smoothed off, & the styloid is taken out- unbelieveably some doctors have just snapped it off & left the bits in!
Another question to ask is to find out if you have any calcification on your stylo-hyoid ligaments- this can also cause ES, you can have this as well as elongated styloids. If any calcification isn’t removed this could possibly still cause symptoms, so it’s important to check this out, & if there is any, to make sure your surgeon will remove it.
We do have a list of doctors in the Doctors Info Section, it might be worth getting a second opinion. Some do phone consults to save travelling; if you want to do that Dr Cognetti in PA is experienced, as is Dr Newman. Dr Hackman in NC has done several surgeries recently, you can search the discussions to see members experiences.
It certainly sounds like ES is worth exploring for you, it could be that having this surgery would relieve alot of your symptoms, but whether you were to have both surgeries at once I don’t know. I guess having the discomfort all over and done with is a big plus, but you do need to make sure that your surgeon knows what he’s doing; the fact that he’s glossed over the ES is a little concerning. Some surgeons do the surgery behind the ear, so it could be done at the same time, but others do it below the jaw. A skull base surgeon might be an idea to pursue otherwise as they might do both surgeries together.
Sorry I can’t be more helpful about the mastoid surgery, hopefully someone can chip in with info about that!
Thanks for the reply. I looked on the doctor recommendations posted in this group and Dr. Bumpous is actually a doc who works at the same hospital as the ENT that I just saw. I saw Dr Jerry Lin from Louisville, Ky. He went to Harvard and was highly recommended to me by another ENT (my 3rd one 
). I’m not sure if I will let Dr Linn do the surgery or I will seek someone else. I definitely want to ask Dr Linn lots of questions now that I have read up on it myself. It’s weird how I left his office thinking this is not big deal’ and now I’m VERY concerned about it. Also, the list here mentions Dr Arick Forest and he is a 3 hr drive from me so I also would consider him.
It just feels good to be in this group and read other’s experiences. I’m someone who is scared to death of surgery and have LOTS of anxiety about it, but after reading up on it I’m equally scared to not have the surgery.
bjane,
Welcome to our forum & thank you for sharing your story. Making it on the longer side is no problem as we love to be well informed about our members’ situations so we can offer better help & encouragement.
Jules gave you a very thorough answer & your response shows you’re doing your “homework” which is good. I also want to encourage you to get a second opinion. I did at my mother-in-law’s insistence & ended up having my second opinion doctor do my surgeries (I had bilateral ES). It is important to thoroughly understand your chosen surgeon’s approach so you were wise to have some doubts about your first consult’s casual approach to ES. There are a lot of discussions about people’s post op surgical experiences. I would say that the majority of our members surgical results have ranged from some reduction to significant reduction in symptoms from surgery. You may feel less anxious about the thought of surgery once you have a doctor in whom you feel confident.
Thank you Isaiah, since finding out I have this problem I feel like it answers so many questions about all the weird symptoms I’ve had the past 1yr and 4mths. So many things now point to ES. I’m someone who takes no meds (prior to gerd) and only go to the doctor every 3-4years. I had to get a primary MD due to all my symptoms. At one of my visits with my PCP I finally just looked at him and said “I know you think I’m a hypochondriac “ because he was not concerned about my throat when I was persistently telling him something was wrong and felt stuck. He did not want to explore any options. Just wanted to keep saying GERD… I have been so emotionally exhausted with all of my symptoms that I have cried at more than one office visit because it’s frustrating to not be taken serious when I feel like something is very wrong and abnormal. I have seen more doctors/visits in the past 16 months than I have in 10 years. I really thought they should take someone like me more serious since I do NOT go often to docs.
PS. I have a new stomach/chest/sternum problem since Jan 10 and once again I know something is wrong but I’m dealing with the same PCP who doesn’t like to think outside the box. I can’t even get him to order a chest X-ray or EKG. (Just venting).
HI bjane,
You have gotten some good feedback. My PCP tried to blame all my symptoms on TMJ and although I do have that issue, it was not TMJ and I did discover I had ES. I also have GERD and I think quite stretch to blame your symptoms on GERD.
To start (if you have ES surgery) you will need a wedge pillow. I have found a great wedge pillow made by MEDCLINE that is good for GERD and has doubled for my ES. I also bought a U-shaped pillow to go on top of it and it tends to keep my neck pretty stable and I dont wake up with so many headaches. Its pricy (about $240) but it is well worth it.
I too have trigeminal nerve, TMJ and mastoid problems as well as neck instability from Ehlers Danlos Syndrome.It can be a little hard to tell what is causing what so I have taken the approach of doing ES surgery (April 2020 and Dec2020) while I get botox, steroids and nerve blocks in my mastoids and temples. I only just recently found a great TMJ specialist and found I have bone loss in my jaw and its jamming back onto my trigeminal nerve.Ill get an appliance for that shortly now that I just got past my 2nd ES surgery.
If you have chronic calcification in mastoid thats a little more rare and I wonder if you have some other systemic issues that would cause all this calcifications. Personally, Id find a new PCP that is also board certified in internal medicine. Labs should be run to see if there is something else causing the over abundance of calcium.
I suggest getting a copy of your CT scan and report and maybe we can walk you thru some of this.
Definately suggest a consult with a surgeon who has experience in ES. Big question to ask if how many have they performed? External vs Internal approach? Do that take the styloid off at the skull or leave a portion of it? Sounds like you have some names of some recommended ES docs. Usually the more experienced ones are ENTs with a sub-specialty in neck and throat cancer and have alot of experience working in the neck around nerves and vessels.
Hi Snapple,
The Neuro I saw for facial tingling and numbness is the one said he thought it was trigeminal neuralgia but I knew it had to be more than that because pain should be more severe with TN and I don’t have severe pain. My tingling is left facial including cheek, nose and forehead. It has not been bad in months. I can feel it sometimes just the jarring if walking causes the tingling. I’ve been driving in the car and hit bumps that cause it. I can take my index finger and tap the groove above my upper lip and feel tingling in BOTH sides of me forehead and cheeks, very bizarre.
As for calcified mastoids, back in 1998 I had a large cholesteatoma removed from my left ear. The ENT’s all tell me that my mastoid is calcified due to that and tell me that is normal for the type of surgery I had. I never actually knew what it looked like until Nov 2019 when I saw CT scan myself, looks bad! They say “normal” for me. However because my eardrum is so severely retracted they want to perform mastoidectomy to open up some space to help the eardrum. Supposedly my eardrum is so flat right now he doesn’t think he could even place a tube, so recommended the mastoidectomy… I’m not a surgery fan so now I’m the past week I’ve found I need both things out mastoid and styloid. It’s stressful and has me scared and worried about so many things.
Thanks for advice on the pillow. Some days lately I’ve woke up to head pain a lot. Feels more like pain and not normal headaches.
I tried attaching one of my CT images from Nov 2019 that shows calcified mastoid left side
bjane,
The trigeminal nerve is most likely what’s causing your facial sensations & possibly even headaches. Here’s the link to a two minute video on YouTube that will help you understand the trigeminal nerve’s location & influence a little better:
I believe I definitely have damage to the trigeminal nerve. Would be nice to know if it was from the eardrum problem or the styloid. The tensor tempani definitely has damage because I’m hyper sensitive to sound in my left ear. The ear doctor I saw last week told me my eardrum is likely pressing on cranial nerves 5 and 7, So if he is right my symptoms are from the ear problem. He’s also the one who mentioned the styloid issue though. So it’s frustrating to just not know for sure. But I guess that’s why a lot of people are here trying to figure things out. A mix of doctors opinions and going by other peoples experiences.
I will add though I don’t believe my ear problem would be causing the sensation in my throat. That makes me believe that part is from the styloid. Not sure.
Bj,
Do you have a copy of the report from this scan? Does it mention ES or length of styloids? Also wondering if you have tried to look at this in a 3-D viewer and able to see your neck views and styloids. I assume so if an ENT mentioned their length.
Wow all that calcification in the mastoid is really something. Never heard of this happening before. We learn something new here every day. I bet this is very stressful for you and yes sounds bizarre when it can be triggered by movement like that. “Normal” for you? Yeah that would bother me too. Hang in there. You are doing all the right things by educating yourself and asking alot of questions.
Snapple,
The report does not mention anything about styloids or ES. This CT scan has been looked at by at least four doctors the one I saw last week as the one who told me I have ES. I was there to talk to him about the eardrum and mastoidectomy and he just casually mentioned that my styloid was too long and told me I have ES. He barely discussed it at all. I didn’t realize what it was until I got home and started googling and ended up on this forum. I have not seen any 3-D images. And I don’t really know what they mean by normal for me. He told me overall that my CT scan was normal. I mean from my viewpoint it clearly is not normal. Basically I guess they expect calcification after cholesteatoma removal. I’m really not sure. I just know I’ve had a lot of symptoms in the past 16 months. Now I’m trying to sort out what could be related to needing the mastoidectomy versus what is related to ES. I’m pretty sure I don’t want both surgeries at the same time because recovery looks like it could be hard from styloidectomy alone. So now I’m trying to decide which one I think is most important. I definitely want to consult with that doctor again and possibly his partner. I have found out that Dr. Bumpous who is listed on the recommended doctors list in this group is also a doctor at the same facility that I saw the ENT at last week.
It probably is more likely to be due to your ear problem, but being hypersensitive to sound has been noticed by quite a few members, so it can also be an ES symptom.
Here’s a link to a previous discussion, although there’s others too if you search for hyperacusis:
Unusual ear symptom - General - Living with Eagle
@Jules thanks for the hypercusis link! Mine just started getting bad in the past 3 to 4 weeks. I noticed that one night when my husband was unloading the dishwasher. As he was putting silverware in the drawer every clang would hurt my ear. I never said anything because I knew I would sound crazy. But he actually is the one who does the dishes more than me and I have noticed it so much lately if I’m in the kitchen when he’s unloading it. I finally told him last week about it. So I’m glad to see others experience similar things because I thought that was really a bizarre thing.
Haha, maybe it’s husbands not being careful unloading the dishwasher- I’m the same when my hubby does it! Don’t like to complain though 
bjane,
Sorry for being slow to jump in on this thread. I have a thought regarding your mastoid surgery & that is that the styloid process grows from the mastoid process of the skull. It makes sense that the styloid would be removed when your mastoid process is “debulked” unless it’s being done from higher up on the mastoid process rather than at its base. Worth asking about anyway.
I also have hyperacusis & think it was one of my early “pre-pain” ES symptoms. I also had a problem w/ choking on food which wasn’t painful but was scary. I now have permanent hyperacusis in my left ear because I have Meniére’s Disease in that ear so it rings constantly & is crazy sensitive to loud sounds. I totally sympathize w/ your situation.
@Isaiah_40_31 I’ve left a message twice this week for that ENT I saw last week. I was a new patient last week. So I’m not familiar with how well their office functions on returning calls. So far they have not called me back. I left a message stating I had multiple questions so they probably don’t want to hear that. I even notice my hypercusis when I am brushing my hair on the left side of my head. My ear literally makes up pop noise sort of every time I brush on that side near the ear.
We have a lot of snow where I live so I’m hoping late today or tomorrow I can go to the hospital and get a copy of my CT scan. It’s from 2019 and I’ve had a copy before but I had to give it to a different radiology department when I had an MRI at a different facility last year. They never returned my disc to me. Now that I’ve been told last week that I have eagle syndrome I want to look at the disc myself. I pulled my report out earlier. It makes a comment about temporal tip sclerosis. I’m not sure what that means and Google is not too helpful with that. It keeps talking about mesial temporal sclerosis. I’m not really sure at this point. I’m going to read more into it. It said it was left side. That’s my problem side. Made me wonder if they were talking about the temporal bone being sclerosed. You may be right about them just removing the styloid at the same time as the mastoidectomy. I’m not sure I have so many questions for this ENT Dr Lin. I would really like to talk to him in person again. I’m hoping they returned my call today. I’m seeing my other ENT (Hanson) on Monday. He’s the one that referred me to the one I saw last week. I feel like I should still keep my follow up with him because he was treating me for Gerd which I think is basically resolved in my throat problems are from Eagles at this point.
Once I get the CT scan disc I will be looking at it with a very close eyes
bjane,
If there are no 3D images of your CT on the disc, you should ask the radiology lab if it would be possible for them to create several from the CT slices. I expect their computer programs are able but they just don’t do it because doctors prefer to look at the slices. My CT came w/ four 3D images that were tremendously helpful for me to be able to see what was going on in my neck.
I hope you do get a call back from Dr. Lin. Worst case scenario is that you have to make another appt to see him so you can ask your questions face to face. Make sure you write them down so you aren’t “speaking off of the top of your head”. It’s easy to forget important questions w/o a list.
Please keep up posted as to what you learn.