Intro - Newly Diagnosed -

General
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Good Morning,

My name is Jessica. I’m 33 and live in NC. I was recently diagnosed yet I’m confused as to what it all means. I have had chronic ear infections since I was an infant. My mom never allowed the doctors to place tubes in my ears because my uncle (her brother) had a horrible experience with them. For years I kept complaining about pain in my right ear, loss of hearing and kept trying to find a doctor that would listen to me. In February 2017 I was diagnosed with a double ear infection. I finished my antibiotic but my right ear still had the infection. I was put on another antibiotic, no improvement, an ear drop, no improvement and going on my 6th week I decided to find an ENT. After multiple visits, ear cleanings, a tube, more cleanings and no improvement, he did a CT scan. I was diagnosed with cholesteatoma. I had surgery in June 2017. The cyst was removed, my temporal bone scraped, my ear drum reconstructed and my ear canal widen. I’m partially deaf in my right ear because the cholesteatoma eroded away some of my hearing bones. I was told it had been growing for some time. I finally felt better.

Fast forward to February 2020. My ENT retires. Both ears start to hurt, headaches, neck pain and dizziness begin. I went to 3 different ENTs. First one said nothing was wrong with my ears, it was probably a migraine and sent me on my way. Second one (saw him twice) and I thought was going to be my saving grace because he listened. He cleaned out my right ear, was afraid to clean out the left because of the crust around my tube so sent me home with ear drops. I returned for my follow up and now he’s saying TMJ, wants me to go to physical therapy and buy a custom made bite guard. My dentist says I do not have TMJ. I find a third ENT, different practice, different city. My tubes are pushing themselves out, ears look fine and it is TMJ. Gives me a high dose ibuprofen (2x a day) and a muscle relaxer for bed time. Go back for a follow up, tubes are still half in/half out, ears look fine and I need to continue with my meds.

My ears still hurt, my head still hurts, my neck still hurts and I’m still dizzy. But I’m only dizzy if I bend over, or tilt my head or turn my neck too far. I get so dizzy that I will dry heave. I decide to visit my primary care doctor. She does a CT scan of my sinuses and an ultrasound of my arteries in my neck. Arteries aren’t clogged. This was her findings for the CT scan: “Normal sinuses.
Mild right to left deviation of the nasal septum. Calcification elongated stylohyoid ligaments. This can be an incidental finding but sometimes is associated with neck pain (Eagle’s syndrome).”
I am going to a different ENT (same practice that did my ear surgery - haven’t been back since my doctor retired - it’s an hour drive one way) on the 19th to discuss options.

Do my symptoms sound like Eagle’s syndrome? I’m single, I work full time, I have 5 dogs and 2 cats. I’m trying to find a 2nd part time, work from home job to help make ends meet. I’m confused, stressed out, exhausted and I am tired of hurting. I’ve read that some people feel like they have something in the back of their throat. I do too but I just thought it was drainage. I sometimes feel like I can’t swallow but I’ve been told that is because of my GERDS. It would be amazing if all these issues were from this and I can have hope to feel better one day but unfortunately due to my experience I don’t have much faith in certain doctors…ENTs being the main ones.

Sorry for the lengthy post. I hope everyone has a great day!

Thank you

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Hi Jessica,
Sounds like you have been thru the ringer. It has taken many of us years to finally getting ES diagnosis after going to many doctors. Some ENT dont believe that ES could cause so much problems and dont believe in surgery. I think because they dont know how to do it. Someone will post a link for specialists in the US. I suggest you get a copy of the scan on disk along with report. Once you determine who you want to see, you can mail it or take to appt. Some docs are doing video consults if you sent them the CT in advance. I do know that Dr. Samji on west coast will do this for $500 but your insurance may cover the costs. He requires a CT scan of neck without contrast. You usually have an answer within a couple weeks. Others will chime in with others perhaps on east coast.
First, does your report give a length of the styloids?
Many ES patients have the dizziness you complain of as the vagus nerve is close to the area of calcifications. It sounds like you are getting conficting opinions about TMJ. My PCP tried to say my pain as all TMJ. It was not. I do have some TMJ though so it can make the whole pain thing somewhat complex. This is why it is crucial to seek out an ENT that has a specialty or interest in Eagles Syndrome.

Its a little overwhelming at first but you are in the right place. we are all here to educate and support since we have walked the same path as you.

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1-s2.0-S221026121500382X-main.pdf (705.7 KB)

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I have a CD of the CT scan and ultra sound. I was not told a length of the styloids. Tuesday cannot get here soon enough. I’m so blessed to have found this group. Cholesteatoma was rare but this is even more rare. I’m seeing John Clinger, MD. on the 19th at 7:40AM. I’m not sure if he has experience in ES. Since the CT was of my sinuses I wonder how they diagnosed the ES unless my neck was included. I’m going to read the article you posted and share it with my mom too. Luckily she’ll be moving to my location in the next month or two and can help me if I have to have surgery. Thank you so much for replying.

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Thats great you have some mom help. Did you get a copy of the CT report? It usually (but not always) has measurements. Radiologist though can measure differently. Usually ES surgeons like to read their own scans because of it.
It is important to find out the level of experience of the doc. Also how many surgeries they have performed. Some docs take the styloid off at the skull and others dont go back that far sometimes causing regrowth or continuing issues. For example, Dr. Samji has performed over 500 ES surgeries. One ENT I saw had done about 50. I declined to go with the one with more experience given they were cutting into my neck.

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Hi Jessica!
Lots of members do have symptoms of ear pain, ES can cause dizziness, you mention that your arteries were checked, but as you have dizziness in certain positions it could be that the styloid processes are compressing the arteries when you move your head a certain way. By the sound of your report you have elongated styloid processes / calcified stylo-hyoid ligaments, which along with symptoms means a diagnosis of ES. But whether it causes all your symptoms no-one can say unless you have surgery & see what’s left!
Here’s a link to the Doctors List:
US Doctors Familiar With ES, Current List - Symptoms and Treatments / Doctor Information - Living with Eagle
If your ENT isn’t on the list it would be worth seeing someone with experience- Dr Trevor Hackman in NC has done surgeries on quite a few members, you could search the discussions for posts about him. It might be worth ringing your ENT’s office to check if he treats ES, as many ENTs are unaware of it, to save wasting your time!
I hope this helps!

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Thank you. I’ve been told this doctor has experience but I’m not 100% sure. This will not be something I rush into. No matter the doctor or experience, what would be good questions to ask? Because of Covid I can’t bring anyone with me and I know I’ll freeze up once I’m there. I was wanting to write some questions down and be prepared when I talk to him tomorrow. I swear I feel worse every day. I can’t seem to find relief. My neck feels like it’s coming in two when I lie down at night. The more my neck hurts, the more my head hurts. I just want to feel better.

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Re sleeping, I slept partly upright with a wedge pillow & a V-shaped pillow (to take the pressure off the sides of my neck), & that did help. I was also prescribed nerve pain medication which helped alot, & it helped me sleep too. You could ask about that- medications like Gabapentin, Amitriptyline, Carbamazepine can help.
As for questions to ask, find out whether they do surgery externally or intra-orally- with external surgery more of the styloid can be removed as they have better visibility in the neck. External is less likely to result in infections, & intra-oral can be a more painful recovery. That said, many members have had successful surgery that way, but external is preferred. And find out how many surgeries they’ve done & what the outcomes were for those surgeries too.
You also need to ask as well if they remove the styloid back to skull base- this gives best results, & the styloid process is less likely to grow back. If they do leave a bit in, then check that they smooth off the tip. & also that they remove the styloid, not just break it off & leave it in- which has been done!
Usually doctors monitor the nerves while they operate to make sure that they’re not putting too much stress on them, I would check that this will be done. Nerves often have to be moved out of the way to get to the styloid, & monitoring makes sure that there isn’t any permanent damage. (It’s quite normal to get some numbness after surgery, & some members have had facial or lip drooping, or tongue issues, but these generally improve fairly quickly after surgery)
You can also ask about swelling post-op; some doctors prescribe steroids which do help with it, although icing & keeping semi-upright will help if they don’t.
I hope this helps! Let us know how you get on tomorrow, thinking of you…

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Thank you so so much. I’ll be printing this and bringing it with me. I’m really nervous and scared if I’m being honest. I’ll definitely have to check those pillows out. I will update tomorrow on how my visit goes.

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I was able to identify an neurologist that gave me botox, steroid and nevre blocks to tamp down the pain until I had surgery. Hope you get some relief

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jeu0721

How did your appointment go? What did you learn about your doctor’s approach to ES?

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I’m so irritated…he was a sinus specialist. His profile stated he was an ENT and listed other specialities but he didn’t understand why I was there because he didn’t have any experience with ES. He did walk me through my CT scan and showed me the ES. He also saw were there was a shadow on the scan behind me right ear where the hearing bones are located. He referred me to a head/neck surgeon. I go on February 1st. He then referred me to an ear specialist but that’s not until April.

I ordered me my wedge pillow and v shaped pillow today. They should be here tomorrow. I also suffer from depression and ever since my failed referral I have been crying off and on for no reason. My temper has been short too. People at work and others, they don’t get how bad I feel and how much I hurt.

I’m so thankful tomorrow is Friday.

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So sorry that you had a wasted visit, and now have another wait…you can’t help but gear yourself up for these appts, it’s all very stressful & then for nothing! Would you be able to see if you can get in to see Dr Hackman any earlier? At least we know that he is familiar with ES? If not then I’d try ringing the Head & Neck surgeon you’ve been referred to- they’ll be familiar with the styloid processes from the area they work in, but some on treat (or prioritise) cancer patients; you don’t want another wasted trip.
I guess if you want to look for something positive in this- at least you’ve educated one ES doctor about ES & maybe that will help somebody else get a diagnosis in the future!
Sending you a hug, & hope you have a peaceful, low pain weekend :hugs: :bouquet:

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Thank you! I’m requesting my images again as they kept my CD. I’m going to check that he’s in my network and check his availability. I know I wouldn’t have the surgery for a few months but I just want to see some light at the end of this tunnel.

I was looking at the findings of my CT scan from June 2007 and it has mild calcified atherosclerosis at the base of the skull. Should I request a copy of these images as well?

I can use a hug, that’s for sure. I greatly appreciate it. :blush:

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You could include your CT from 2007 but it’s most likely not useful for whomever you see for ES. Every doctor is different in how much information (s)he wants. You could ask when you make your appointment if you should send that older scan as well.

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Good Morning,

My appointment yesterday with Dr. Sullivan was not what I was hoping for. He says my current CT scan was inconclusive. He could see where I had the calcification elongated stylohyoid ligaments but he was unable to follow them down the neck or see the surrounding nerves/muscles/veins. I now have a CT NECK/SOFTTISSUE/THYROID WITH INFUSION on 2/16/2021 and a follow up with Dr. Sullivan on 4/19/2021. I’m going to reach out to the offices of Dr. Donna Sharpe and Dr. Trevor Hackman to see when they have availability.

Dr. Sullivan did make a comment that confused me. He looked at the MRI I had in 2005 and the CT scan I had in 2017. He said it looks like I’ve had the calcification elongated stylohyoid ligaments since birth more than likely. Has anybody else been told that? Does that make sense? He said that the current scan from December and my symptoms do fit that of ES but he won’t know until the new scans. Then he made the comment this could all just be a tension headache since I don’t have frontal sinuses?!? He also said I should show signs of difficulty swallowing with ES. Very rare do I have trouble swallowing so what does that mean? I feel like I am going crazy. He said sometimes people just get fixated on something and believe it into reality? Am I imagining the pain? The pressure? I don’t understand. I just want to feel better. I feel like I’m doing something wrong. I try so hard to fake it in front of others and especially when I’m at work. I find myself secretly crying at my desk and blaming allergies if anyone sees me. Then in the car or at home I just break down balling. I’m doing the best I can but I feel like I am failing. I keep losing faith in the health care system after every doctor’s appointment. It’s been a year now that I’ve been looking for answers.

Dr. Sullivan would not give me anything for pain or dizziness. I have the wedge pillow and V shaped pillow but I cannot use the wedge pillow. I wake up almost in tears when I do. I have found more comfort in my V shaped pillow by itself. I bought a TENS unit and it made me feel worse. The headache and pressure feeling intensified and I felt very nauseous. Heating pad helps some but it’s hard to use one at work. I cannot find any relief for my ears. He said to do 800 mg of ibuprofen every 6 hours and then 2 hours before bed do 1000 mg of Tylenol.

Just wanted to give you guys an update.

Thank you,
Jessica

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My first impression is to find another doctor. One that has ES experience. Dont let this doctor upset you by filling your head with doubts and odd stories or assumptions. You are not going crazy! You just need to see someone that is a specialist in ES.
Also try and get a copy of the current CT scan on disk and the report. Hang in and make an appt with someone who specializes in this. It may take a couple months so hang in there.

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So sorry that your appt was so disappointing! I agree with Snapple that it would be better to see someone else, it doesn’t sound like he’s very knowledgeable…
I’ve never heard of anyone having ligaments already calcified at birth, & certainly not sure how he came to that conclusion. If he could see that they were calcified from your 2017 scan, & you have symptoms then that should be enough to confirm ES, so not sure why he wants you to do more testing?
Also I never had difficulty or pain swallowing- it is one of the more common ES symptoms, but not essential, & certainly doesn’t mean that you don’t have ES! I had bilateral ES. The difficulty swallowing can actually be caused my irritation of a nerve rather than the styloid process poking in your throat- there are quite a few Cranial Nerves which can be compressed by the styloids, depending on the length or the angle of the styloid processes it varies the symptoms.
It might be worth trying nerve pain medications- there’s info about those in the Newbies Guide Section, maybe you could ask your GP/ PCP about that as Dr Sullivan didn’t help?
I hope that maybe one of the other doctors can help you- you’ve been messed about & fobbed off alot! Sending you a hug, thinking of you… :bouquet: :hugs:

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All I can say is everything Jules & Snapple 2020 said is great advice & encouragement. I’m sorry, too, that Dr. Sullivan has left you in a poor emotional state w/ all his nay saying. You’re definitely heading in the right direction getting a new CT scan & the one with contrast you’re getting this month will show if you have vascular compression from the styloids which will be helpful.

Dr. Hackman & Dr. Sharpe should be more helpful for you.

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I’m going to call and schedule an appointment with Dr. Hackman. I have Cigna insurance and when I search for Dr. Sharpe, I come up empty handed. Thank you all for your support. It means a great deal to me.

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