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Eagle Syndrome - Online Support Group

New Here - Hello & Introduction

Hi there - my name is Andrea. I’m a 46 year old female with severe left sided facial pain. I’m narrowing down where this journey is taking me and Eagles Syndrome is a definite possibility. I’m still undecided and maybe those with more knowledge reading this can help me out a little. My symptoms started in 2005 after a vaccine. I started having severe dizziness and rashes and GI problems which manifested over the next few months into pain in my jaw. I had swollen lymph nodes and no one could figure out what was going on but luckily for me the symptoms abated quite a bit and I went on to get married in 2008 and had my 2 daughters in 2009 and 2011. In 2012 I started to have odd symptoms again, GI symptoms, double vision, rashes, tightness in my jaw/face. It escalated into severe chronic illlness that I have been experiencing since then. I started getting a lot of neck pain, severe neck pain where I could barely move my arms. My jaw started hurting intermittently. First on my right side. It would come and go. Then I started getting nerve pain in a bottom tooth on my right side. No infection but I elected to root canal the tooth because the nerve pain was driving me mad for months. It actually settled down but the severe neck pain continued and left sided facial pain started. Intermittently at first coming and going. Severe dizziness started. Dry mouth, GI problems. Chiro kept telling me I had TMJ. Had a mouth guard made that provided no relief. One day I blew up a balloon for my daughter and it was like a knife stabbed me in the face and ear. Started getting some random ear pain. In 2017 I became very dizzy after some family stress. Extremely dizzy for months. So many tests revealed nothing. So many dysautotonia symptoms. Around mid summer 2017 I started getting some random pain in to the top teeth on my left side. I thought oh no thinking back to my root canal the few years before. Started getting some feelings like my ear was shaking from the inside. This is where things get weird and where I’m not sure this is Eagles Syndrome. In Oct 2017 I woke up with a really red eye on the left side. Not pink eye just really red. Then I started getting some redness on the left side of my face. My sciatic nerve started acting up around the same time. I was not in constant pain in my face yet. In Dec 2017 I went to an osteopath who was helping me with my back. He noticed my pelvis was out of alignment and wanted to go into my mouth to fix it?? I did not want him doing any adjustments in my mouth because my chiro had done that before and I was in pain for weeks. He told me it was not like a chiro adjustment. I was very guarded when he went into my mouth. It was a simple gentle adjustment but I still felt weird after. I could feel it and my brain couldn’t shut off the feeling. By the time I was driving home my face was turning bright red abc my brain was reeling. I was in agony. I tried to calm myself down. I’d been in pain in my jaw before and it would calm down. This pain was super intense though. My whole ear was red. I was scared. I could barely eat or move my jaw. I let it rest for a few days then I got real hungry and I ate some potato chips and my jaw just never ever recovered. The pain was 11 the ear pain started, I lost feeling in my teeth and my masseteur muscle was in still Is in spasm hard as a rock. Despite it being 2 years I am still in agony. I get pain in my ear that feels like it’s stabbing me. Pain in the front and side of my neck. Pain at the base of my skull. Masseteur muscle in spasm. Spasm in my temporal muscles. Can’t chew or my face will go into spasm. Facial spasms started in March 2018 where randomly face will pull back. I’ve developed a movement disorder in my jaw because I’m constantly looking to find sensation in my teeth. I’ve seen the top TMJ dr in Canada. There is mild arthritis in my TMJ joints but be says my symptoms are not TMJ. Neurologists first called it trigeminal neuralgia, then atypical facial pain. Then trigeminal sensory neuropathy. Now oromandibular dystonia or a functional movement disorder. The lat while the pain has been intermittent but the numbness in teeth the worst with the movements. Now after doing done physio Physio encouraging me to chew gently the ear has exploded in pain again. I’ve been getting shaking in my right ear thx last couple of months and done pain starting in the right side too. Pain when I swallow. Ears itchy with nerve pain. Oral ulcers have been forming recently. My brain gets really hyper excited like I’m going to have a seizure. Sound sensitivity developed recently. I’m at a loss here. I had a CT scan last year. They found accessory parties gland tissue but they don’t think that is reason for my pain. Incidentally on cone beam CT this summer they noted that SL was ossified. I have an amazing ENT skull based surgeon who is trying to do anything g he can to help me. He ordered another CT scan recently (no contrast as I am deathly allergic and will never have that stuff in my body agsin). This was very finely cut and he was specifically asking about Eagles. The bones are 3cm bilaterally abc both ligaments are ossified. He left it up to me. I don’t think he believes it’s Eagles but wants to help me. He said the surgery would be easy enough as he is in that area all the time. I’ve decided to get a CD or my images and send to Dr Cognetti and have a teleconference with him to heal me decide what to do. Surgery I’d not easy for me and I don’t want to mess with the area with all this pain without being 100% I am pursuing the right thing. I can’t get this wrong or I will die from the pain I’m in. I’m really at the end of my rope with them pain. Part of me feels like I have an ongoing viral issue that is attacking my nerves or an autoimmune disease. All MRIs of my skull base and my trigeminal nerve have been clear. All drs can offer me are scary anti-Seizure meds. I can’t even take Advil because I’m allergic. So I know with Eagles it’s the length and the ossification and/or either one of those on its own. By definition the ossification would tell me I have Eagles. I don’t understand how the ossification would cause all my issues. That’s my concern, if they were really long I get it. But many drs say ossification is incidental. I know it is if you are asymptomatic but not if you have symptoms. My ENT skull based surgeon here in Toronto is extremely kind and competent. I know with all my heart he wants to help in any way he can. He is not experienced enough with Eagles to help make the diagnosis but I feel he is an experienced enough and excellent surgeon to handle the surgery should I choose. He is fully supportive of me getting Dr Cognetti’s opinion and consulting with him again after to see where we go. Heck he said he would even speak with Dr Cognetti if it came down to it. So I’m sorry this is so long but I wanted to explain my story and see if you all agree with where this is going or maybe give me some advice if what else I could be doing. I’ve only read some stories here and I am so sorry for what you sll we all go through. It’s life draining and scary this pain. My sincerest wish for answers and complete healing And pain relief for everyone.

WOW! Andrea, you’ve been through so much & for such a long time. No wonder you’re at the end of your rope. First, I’ll answer the question you posed about how could calcified s-h ligaments cause so many problems.

The stylohyoid ligaments run from the tips of the styloids to the lesser horns of the hyoid bone. When they are not calcified, they move freely during swallowing, speaking, eating, singing, laughing, coughing, etc., and allow the hyoid to move as it needs to. When they calcify, even partially, they begin to become immobilized & then hinder hyoid movement as well. When that happens, muscles, other tendons & ligaments, & fascia get recruited to try to do the work those disabled ligaments used to do. Those new recruits are now doing work they were never intended to do & over time, they affect the surrounding nerves which become more & more irritated & the symptoms their irritation produces is quite diverse & depends on which nerves are affected. In your case it does sound like the trigeminal (teeth, ear pain, face pain, facial (face pain, dry mouth, ear), accessory (neck pain) & vagus (pain at the back of your head, GI issues…) nerves, at the very least, are in an uproar. Along w/ that it also sounds like you have some vascular compression which is resulting in your severe dizziness. This cannot be seen w/o a CT or MRI w/ contrast but can sometimes be detected by a doppler utlrasound. Your jugular vein & internal carotid artery would need to be checked w/ your head in the position that causes the worst dizziness (i.e. the provocative position).

The long-term dry mouth could be the cause of your canker sores as you don’t have the necessary saliva to help dilute the acids & bases in the foods you eat so they are now “eating” the inside of your mouth & thus canker sores result.

Symptoms I have not covered i.e. shaking sensation, rash, etc., can all potentially be explained by the huge amount of trauma your body has suffered from the very irritated cranial nerves & vascular tissues for so many years. Our bodies are built to thrive & survive & do whatever is necessary to try to make that happen. When major things start going wrong, the body can go into overload trying to get rid of the problems it can’t resolve. This can result in all kinds of other unexplainable symptoms, some of which it looks like you may be experiencing.

Below are links to a list of short videos which will help you begin to understand the affects of irritated or damaged cranial nerves. You will have “Aha!” moments as you note the symptoms presented at the end of each one. You should share what you learn w/ your ENT as it will be insightful information for him. I also recommend you read some of the research articles (many links in the Newbies Guide) & share w/ your doctor the ones that contain information relevant to your situation. Removal of the calcified ligaments causing the symptoms is truly the only cure for the problem.

Accessory - https://www.youtube.com/watch?v=e4IgAGuP_Hk
Trigeminal - https://www.youtube.com/watch?v=FhbQBrX3Kq0&t=9s
Facial - https://www.youtube.com/watch?v=cWGf2tz0D90
Vagus - https://www.youtube.com/watch?v=a-NCs1lOU5w&t=5s

I’m also including the links for info about the glossopharyngeal & hypoglossal nerves as these may also be affected in your case:

Glossopharyngeal - https://www.youtube.com/watch?v=Kmx8ZYqhGIo
Hypoglossal - https://www.youtube.com/watch?v=GVSR2dDOKh8

Here is a link to some posts made by onelessstyloid that contains links to several research articles you might want to share w/ your ENT: Article in public domain

It is my opinion (I am NOT a doctor) that having your calcified ligament(s) removed will, over time, resolve much of the pain & many of the other symptoms you’re having. I will also make this recommendation: Contact Dr. Samji instead of Dr. Cognetti. Though both doctors are competent ES doctors, Dr. Cognetti very much limits the time he spends on ES & w/ ES patients where Dr. Samji makes them a priority. You’re likely to get a phone consult appointment much more quickly w/ Dr. Samji than Dr. Cognetti, & it sounds like time is of the essence for you now. The quickest way to get ahold of Dr. Samji is to email his medical assistant - lauren@caminoent.com. I know Dr. Samji allows 45 minutes for his phone consults, & I think he charges about $650. I don’t know what Dr. Cognetti charges or how long he spends on a phone consult.

I hope this information is helpful & not too overwhelming. The better educated you are about your body & what can be causing your symptoms, the easier it will be for you to make a decision as to the correct steps toward healing.

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Thank you so much!! So much info here and I appreciate it So much!! Will contact Dr. Samji’s assistant after the holidays and see where I can get him my CDs. I have had many MRIs that never noted any vascular compression. I’ve had cartoid Doppler u/S in the past which was fine as well as MRIs looking for thoracic outlet syndrome. None ever noted any compression but my dizziness comes and goes and can go for months and months. I think it has more to do with the irritated cranial nerves than vascular issues. When my ear pain started acting up again the dizziness came back. In any case I have been MRIed up in down with and without contrast and no vascular compression or issues ever noted. The CT scan that made me have the allergic reaction was actually a venogram which never showed a problem. I will definitely bring it up with my ENT though. I’m also wondering if maybe doing an injection with the lidocaine and steroid might help with diagnostics. I’m actually going to have a lidocaine and ketamine infusion in early January for the first time to see if it came help with some of the pain. Thank you again for all the useful info to follow up with!

Hi Annieloo,

Dr. Samji will want a CT w/o contrast. He is not interested in the soft tissues. CTs w/ contrast have a lot of “static” in them i.e. all the soft tissues are visible & make it much harder for him to accurately determine the correct info about styloid length & ligament calcification.

I’m glad to know you’ve seen no vascular compression in your scans though it won’t be obvious if your head is not in a provocative position when the scan is done. That said, it does make sense that it could have more to do w/ an inner ear nerve issue than a vascular issue due to the extensiveness of your nervy symptoms.

Hooray that the info I’ve given you is helpful! My hope is that it will lead to your full recovery.

:gift_heart:

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Thank you again so much! I really appreciate it. Lucky that CT scan it just had a few weeks ago was without contrast and the report commented specifically of on the ligaments and bones as well as the TMJ. I can send Dr Samji all my previous MRIs and CTs if he thinks it will help. Thank you so much for the info to contact him!!

I think Isaiah’s covered pretty much everything!
I would just say that although my symptoms were nothing like as bad as yours some were similar- I had the tooth pain, ear pain, which spread to all branches of the Trigeminal nerve, then tingling & numbness in my face. I also started getting some autoimmune symptoms- Sjogrens Syndrome- of dry mouth & eyes, & had some salivary gland stones, although the blood tests were always clear. I later began to get vascular symptoms which made me feel pretty ill, including dizziness, off balance, difficulty concentration.
After surgerythe nerve pain has settled down, although still there a bit- I didn’t want to take medication, but before surgery the pain was too much so I started amitriptyline, which helped loads. I do still take it, but the pain is alot better than it was, & the numbness etc is way better. The AI symptoms have stabilised too & the vascular symptoms tons better.
Unfortunately no-one can say 100% that surgery will take all your symptoms away, but for most people, as long as the styloids are removed as far back to the skull base as possible, the tip smoothed off, & the calcified ligaments removed, then symptoms should improve. The lidocaine injections into the area don’t always work, so isn’t necessarily a good indicator of whether surgery will help, but worth a try as some members have found it helps.
Normally we suggest people have surgery with an experienced doctor because of the risks, but if yours is a skull base surgeon then they sound a good bet. No doctor will guarantee that your symptoms will go after surgery, & they’d be wrong to do that, & it can be a difficult decision. What often sways it for people is when quality of life is so bad that the pain you’re in outweighs risks of surgery; it doesn’t sound like you have much of a quality of life right now?
I think sending your scans sounds like a plan, I would just add though that MRIs don’t show styloids very well, so without contrast wouldn’t necessarily show any compression by the styloids, so I wouldn’t rule out vascular ES.
I hope that as soon as Christmas is over, you can start moving forward & get some help.
Best wishes!

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Hi Jules - thanks for your msg. I just wanted to ask about the amitriptyline. How much do you take? My dr prescribed me a super low dose of noritriptyline to get started because I have a fear of medication but I’ve been scared to start even at tiff low dose because I’ve heard some people can get ear ringing as a side effect. That Is the last thing I need on top of everything else. Did you get any side effects? At what dose did you start to see some help? Thanks all the best Andrea

No side effects on a low dose except a little groggy in the morning- but at least I got some sleep! I take 20mg amitriptyline- both medications work well at low doses for nerve pain, under 50mg. Hope it helps!

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