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Eagle Syndrome - Online Support Group

First Timer Questions

Hi Christy!

Many people have ended up w/ a crooked smile/lip droop post op. As SewMomma noted, it should fully resolve in 2-4 months but could take longer. Her crooked tongue recovered in 3 months. It took mine 9 months. We’re all different in healing rates.

In my opinion, letting your body heal on it’s own for the first couple of weeks at least is important. Doing some gentle massage & nerve stimulation of the area w/ a washcloth, soft toothbrush, sock, etc. won’t hurt anything during this time. Within the first month you can also start using blunt but sharper objects (i.e. a toothpick, a metal fork, etc.) to gently poke around on the dysfunctional side to aid in nerve stimulation. I know that may sound awful to think about but you can poke gently & not injure yourself & it will help wake up that sleepy branch of the Trigeminal nerve.

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There have been quite a few members with crooked smiles, it can take time to resolve, but usually does! You could read emma’s posts; she had alot of trouble with her eyelid after her last surgery, but it is improving, her attitude is very inspiring…hope your girls had a great camp, take care of you a bit & give you a good rest when they get back…I have 2 boys so didn’t get any looking after :joy:, but maybe girls are kinder? Hugs to you, keep strong & patient…

I am going through exactly the same stress right now. My main issue is eustachian tube dysfunction. Ear pressure and pain. Also palate pressure (weird sensation) And especially at the end of the day headache pressure. I really wish ES was the answer for all my symptoms but I have no clue if it is. It is just hard having this type of surgery and get no results or end up even worse. I really dont know what to do.

Hi tatianac -

I had the palate issue as one of my ES symptoms. It would come & go. It was weird.

End of the day head pressure was a pretty bad symptom with vascular ES for me. Can you lie flat at night? If so do you wake with a headache? I had to sleep propped up, if I slept laying down, would have a bad headache, & then it would gradually go off in the daytime. But then the head. & ear pressure would gradually build until it was very painful at night.

Head pressure was a consent issue that was minimally relieved once I laid down. After my first surgery on April 29, 2019, that went away! I haven’t had a headache since! So, I can confidently say that elongated styloid on my left was the cause for that! I’ve even tested it by driving in elevation, on a cloudy day which always made my head pressure and ear popping/fullness/pain MUCH worse!!

Now, for the ear problem “aka “ ETD it’s hard to say right now if that has improved because on my left I’m still having popping and fullness in that ear however, it could be a chain reaction from a TMJ issue. My jaw on the left gets stiff, cracks and pops frequently throughout the day and then my left ear gets stuffiness, popping, and even a weak muscle/nerve sensation like my Eustachian tube is not properly equalizing and providing a tight seal upon swallowing or talking. It affects the sound quality in that ear.

I had my second styloid removed just 10 days ago and to my disappointment my jaw cracking and popping on my left is still very much there and worse! However, I had my post-op appointment with Dr. Samji yesterday and he said that my jaw would be extra sore because under anesthesia they have to open my mouth very wide to insert the breathing tube. So, it’s not uncommon to feel TMJ /jaw pain. However, since I’ve already been dealing with this prior to both surgeries I think I need to go find another TMJ specialist to get a diagnosis. The first one I went to a year ago said I didn’t have TMJ which I thought was crazy because I had all the classic symptoms. Dr. Samji told me yesterday that Eustachian tube problems and TMJ issues are always associated! It’s kinda like the chicken and the egg dilemma “which came first”? Now, he wouldn’t say if Eagle Syndrome was the cause of my TMJ problem but he said I definitely had Eagle Syndrome and having the surgeries were necessary!

I still have quite a bit of swelling from my recent surgery so, it’s to soon to know what improvements will be coming. I’ve learned from past surgeries that you won’t know what’s been fixed until all the swelling/inflammation goes down.

I would like to see a physical therapist to start working on my TMJ and do Myofacial release but Dr.Samji says I should wait 3 more weeks.
But, perhaps I should talk to a TMJ specialist first? Or, just do nothing and see if everything will settle back in place on it’s own but, wow :open_mouth: I don’t think I can deal with this jaw stiffness, cracking/popping pain much longer! It’s miserable and more problematic than my post-op surgery pain!

I can lie down flat. When I wake up I dont have headache. But the minute I get up ear pressure comes and gets worse as I stood up. It subsides at some degree if I lie down. Comparing my symptoms to yours I see my problem is not ES (unfortunatelly).

Not being propperly diagnosed is the worst scenarium. I think my eustachian tube haa some dysfunction. It is not opening and closing as it should. It is kind of patent though I dont have autophony. I have seen 11 ENTs. Each one has a different theory to my case. There is a doctor in Boston, named, Dennis Poe who is expert in ETD. But it might take 1 year or 2 to see him. If he accepts to see you. Especially for foreigners.

And now I also have this loud constant tinnitus and hyperacusis. Before botox was only pain but I could be on public. Now with hyperacusis no more cinema, family parties, even tv hurts. I have 2 kids. I really don’t know how I am gonna deal with my life from now on. I really hope that at least tinnitus and hyperacusis go away after botox is gone.

I am really sad.

Thanks Jules

Just because your symptoms don’t match mine doesn’t mean you don’t have ES, lots of us have weird & wonderful but unique symptoms! I know it’s a difficult decision for you, & you need to make the right one, but I wouldn’t rule out ES…

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Hi All,

I’ve been waiting a while to give a post-op surgery update because I really wanted to give my body a chance to recover and see what symptoms abated and be able to give positive, happy news but it’s very sad to say, I don’t!! :cry: My face, jaw, and left side ear pain is still very problematic and my dizziness is way worse, and blood pressure is high!
I decided to purchase an expensive out-of-pocket, state of the art 3D scan called a CBCT per recommended by my Orthodontist. The good news is my TMJ joint is in tact and no signs of degeneration joint disease were seen. But a very concerning observation was found in my C-Spine. Apparently I have an ossified ligament in my C1. As a result, a bony bridge was created “in theory” to protect my Vertebral Artery and SubOccipital Nerve from being compressed. Now, I haven’t really seen or talked to a Dr. about this yet so, I’m mostly educating myself on the web which we all know is a very scary place to look! So, yes I’m freaking out right now! I just received these results a couple days ago and haven’t slept much and I’ve cried a lot!!

I had an appointment with a Gentle Touch Chiropractor today that was recommended by my Orthodontist. Apparently she works miracles and has successfully treated many people with very complicated cases. I emailed her my x-ray before the appointment so she’d have time to review it. When she called me into her office, her eyes and big hug said it all. I knew I wasn’t going to hear good news. She said all my symptoms would be in line with this calcification on my spine and she wasn’t sure if I’d get better under her care. She did admit that in her 23 years of practice she has not seen this or Eagles Syndrome. She did say that she can assist the nervous system to help heal itself and remove interferences but I’ve heard that before under Chiropractic Care. She did recommend I go to Mayo Clinic and have them study my case but seriously who can afford that? I’m flat broke from all my medical expenses! I don’t know what or who to see next!! I’m at a loss and COMPLETELY hopeless!!

I’ve been seeing a physical therapist for the jaw/TMJ pain and it sort of helps. I have an appointment with a top TMJ specialist on Monday because I want to know why my TMJ joint pops and clicks which gives me more ear pain which I think could be causing my dizziness/ in-equilibrium or possibly disrupting my Suboccipital nerve which is tightly tethered down by this Arcuate Foramina (bridge) bone which causes compression. It’s all so confusing and scary! I’m not finding much treatments for this and surgery on your spine could be catastrophic! But, that’s just based on 1 study I read and my instinct!

The Chiropractor did say my neck is really misaligned so, maybe if I get things straight again I’ll feel better and life would be great.

God I’m praying!!:pray: My family needs their Mommy back!! This is so depressing for us all!

Christy I’m so sorry that ES surgery hasn’t helped you. That is so rotten to feel no better, & this diagnosis sounds pretty grim. I don’t know anything about it, so can’t give you any advice I’m afraid…maybe others might, & US members might have suggestions for the health care system. Do any teaching hospitals ever take cases on just because they’re challenging or ‘interesting’? Is there much research out there about this new diagnosis?
All I can say is that I’m praying for you…sendi g you a very gentle hug too.

Thanks Jules,

I’m going to cast my net out far and wide to get some answers while I still have some strength and fighting fire within me. I totally feel like I’m on my last leg and I’m crawling to the finish line. I have the most beautiful precious daughters and wonderful husband! I have to keep going for them!!! God is going to have to perform a miracle here! Jesus please come to our rescue!! :innocent: :pray:

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Hi @Christy

I am sorry that you are going through so much. I hope that your chiropractor can help you. At least she can start with the anxiety right away.

I posted two articles under “Thank You To All” which explains the vagus nerve and its relation to anxiety. I will be praying for you for a path forward and relief from pain and anxiety.

Also, see Book bilateral Eagle syndrome- my son’s case The book written by a mother about the very long journey on what it took to get answers and results for her young son.

Peace,
BG

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Hi Christy!

So glad you posted as I was going to send you a PM today to check in. Since you’re in the Sac area, UC Davis Med Center is a wonderful place. It is a teaching hospital, & they’re doing lots of research & have a lot of amazing doctors. I’d check there. Your medical insurance would, I hope, cover at least part of the cost of therapy or surgery if needed. Obviously, when it comes to the spine, you want first, second & third opinions. At least you know what you’re going after & aren’t waiting for another diagnosis. I wouldn’t jump to conclusions based on one internet article. Weigh the evidence pro & con about surgery once you’ve gotten opinions from doctors who do this sort of thing.

I will be praying for you, too. I am sorry ES surgery wasn’t the solution to your symptoms, but it was a step toward ultimate healing. I bet the two - ES & the new situation, are somehow related.

:rose:

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Hi Isaiah,

Yeah, I’m pretty bummed about the new finding but it’s good to have more information to possibly explain my symptoms. I thought about today though and had to remind myself that I just went through 2 big surgeries, and I still have a good amount of swelling in my neck, and my TMJ, and jaw muscles are really tight from the surgery. Dr. Samji said I definitely had Eagles and needed the surgery so, I’m sure those bones created a lot of problems for my body. I don’t have any more head pressure/headaches so, surgery certainly fixed that.

I don’t have the main symptoms like headaches, or severe neck pain of this new finding. So, perhaps it’s not the cause of
my symptoms. It is more common for people, like 26% of population so, it’s not that rare.

I still think it’s very likely my TMJ is causing my symptoms because it cracks and pops frequently throughout the day and then my pain level rises, going to my ear, and then the swaying sensation/lightheadedness intensifies!

So, I need to keep working on loosening up my TMJ/face muscles and see if it improves. I start Acupuncture on Sunday. Hopefully that will help.

Thanks for the prayers!

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Hi Christy,

I’m so glad you have a plan & that there are other potential causes for your current symptoms. Please keep us posted as to how your healing progresses. It would be great if acupuncture helps. It is basically the same as dry needling (mentioned in other posts) but works along the body’s energy meridians as opposed to focusing on muscle trigger points. Same therapy different perspective. Regardless of who does it & what the philosophy is behind it, I’m a big fan of dry needling. Have yet to try acupuncture but may go there to see if helps my first bite syndrome.

:sunflower: :relaxed:

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Oh happy day!!! I just had the most fabulous and productive Dr.’s appointment I ever had!!
I met with a top Oral and Maxillofacial Dr. who practices in my area but also teaches classes at UCLA. It’s so refreshing to sit down for nearly 2hrs being heard by an extremely knowledgeable Doctor!!! God really lead me to him and placed me in the right hands!!

I couldn’t believe he knew all about Eagle Syndrome and is currently working on bringing awareness to the medical field!! He feels it’s highly misdiagnosed and under-diagnosed! He wants to interview me and bring my story to his students and colleagues! But not only that, in his lectures he wants to include the Eagle Support Group for a resource. So, with the moderator’s permission he would like to do that.

He put all my fears to rest about the calcification mentioned on my last post. He said it’s very common, sees it all the time, and non-life threatening!!! In fact he said neurologist don’t even order CT scans of the spine anymore because they find so much calcifications and typically they never cause a problem and when they do trust me your body sends off the alarm!! :rotating_light:

He did a very complete thorough examination and said the cause of my ear pain, and unbalance/dizziness is from my TMJ joint being pulled on from very tight masseter muscles (We can thank stress & ES for that!!!) which makes my jaw crack & pop, which sends an inflammatory response to ear, which narrows Eustachian Tube, causing pain, popping, fullness, equilibrium problems, bad posture, anxiety, and raises blood pressure. He unraveled and explained all my chronic pain issues perfectly!!!

He gave me some great stretching exercises, breathing techniques, and wants me to download an App called No Clenching.

I’ll return in 2 weeks and see if there is improvement and if not he’s going to fit me for a bite guard that I’ll wear every night to allow the muscles to rest and heal.

So, there you have it folks, I think I’m going to be ok and I have hope again that I’ll make a full recovery!! Praise the Lord!!!

Thanks for all your prayers!!! :kissing_heart: :heart:

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Christy, that’s amazing! So pleased prayers have been answered & that you have hope for a recovery! It’s great that there are doctors out there aware of ES & wanting to spread the word! I’m sure him mentioning the site is not a problem, although we’re obviously not medically trained, it’s a peer support group for those with ES- usually doctors aren’t impressed with what we do! Who was the doctor you saw, can you give his name? Does he do surgery as well?
Really hoping that the bite guard & the exercises helps you, big hugs!

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That is absolutely fantastic, Christy! Thank you for your comprehensive explanation!

How exciting that someone from the medical community is actually interested in our forum rather than critical of it!

Please let us know how the exercises you were given work for you. I’m praying for the best possible outcome.

:heart:

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I saw Dr.Kenneth Moore DDS . He doesn’t do Eagle Syndrome surgery but has knowledge about the condition.

Okay, thanks- shame he doesn’t, he sounds great!