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Eagle Syndrome - Online Support Group

Upcoming surgery, 3 1/2 years since this began

I saw ENT surgeon, Dr. Neil Futran (on list here for Washington State) the day before Thanksgiving.

Background : I have had severe pain in the styloid area since May of 2016. It started as a really bad earache with swelling underneath my ear. I later found that my left sternocleidomastoid muscle is in complete spasm, getting worse, so bad my head tilted to the left. :face_with_symbols_over_mouth:

I cannot count how many doctors I have seen. I was told over and over it was “in my head”, because I have a “history” of major depression, anxiety, and PTSD, even though I have been doing very well. :expressionless:

(Since 2016, I tried every nerve medication, had a trigeminal nerve block, a Medial nerve block/ablation (back of my neck, hoping to burn any nerves causing pain), every muscle relaxer. I have had Botox in cranial nerves (that helped with a symptom, my left eye stings and tears, it hurts), steroids injected everywhere, prescribed steroids, much more)

I finally found a Jaw/ Orofacial pain specialist Dr. Jason Pehling (in Seattle). :grinning: He has spent 3 years trying to help me. Very long story. He did not consider Eagle Syndrome because my neurologist had previously “ruled it out” based on my symptoms (If you are in Washington, and have Orofacial pain/jaw pain/headaches etc, he is the best specialist to see . People fly from all over to see him…(he is NOT an ENT). He is like “House, MD”, lol.)

I had a 360 imaging CT scan done in early October at Dr. Pehling’s (my third scan there) He saw the elongated styloid processes (amongst other jaw issues, sigh). He sent the scan to a specialist- a very experienced MD/PhD who specializes in radiology, confirmed the styloid processes were 4 cm bilaterally. (Additional results from a traumatic fall I had in January 2019).

It is important to mention that I had an at home sleep study done in October 2018 . The results showed mild sleep apnea . I have no symptoms of sleep apnea (that I know of). Most Doctors finally agreed that I was clenching my jaw, causing the left sternocleidomastoid muscle to spasm, and the cause of the clenching was sleep apnea.

Dr. Pehling was not convinced this was the cause. Clenching my jaw was a new problem. I had no idea I was clenching. He was suspicious that sleep apnea was the cause because I was clenching 24/7, while awake. He made an appliance to wear 24 hours a day, which helped, but we knew there was more.

I fell in January, and that changed everything. :face_with_head_bandage:

I fell out of my loft and landed on my head (left temple/upper cheekbone, left TMJ. Severe concussion, memory loss, my lower jaw was dislocated, it is now permanently moved forward and to the left. My vision has changed, I am still recovering from a lot of things.

:boom: Appointment with Dr. Futran at University of Washington :boom:

He had a cancellation and I had two days to rush my medical records and my 360 CT scans to him. The files are huge, they are on a DVD, so I can’t post any pictures. I have 4 cm bilateral styloid processes.

He was absolutely amazing, best bedside manner! He is the big cheese ENT surgeon at the University of Washington. I was just going in for a consultation, I was nervous.

My prior experience with surgeons throughout my life - generally they are very busy, conversations are short, abrupt, etc. Dr. Futran spent over 3 hours with me , he was very easy to talk to, he reassured me that this is REAL. :hugs: :smiling_face_with_three_hearts:

:smiley: He was completely prepared for my appointment! I have thousands of pages from the past 3 years, somehow he had gone through it and knew everything. He had reviewed my scan beforehand. I was astounded, out of the million doctors I have seen none have been so prepared.

I don’t have classic symptoms of Eagle Syndrome, except a sore throat. I was worried sick before my appointment that I would be dismissed. My general ENT did an exam - I have my tonsils, they are huge, and I have zero pain with palpitation.

Anyhow, he did a thorough examination. He showed me my CT scan, going through each 360 picture to show me where my styloid processes are growing.

My styloid processes are growing behind the tonsils, it is difficult to tell where or what they are pushing on. There is a possibility that I have a variation of ** glossopharyngeal neuralgia**.

He said I have tried everything (before I fell, I meditated, used the Curable app, journaled, educated myself on chronic pain, still seeing a pain psychologist, biofeedback, acupuncture, physical therapy, massage, etc), and agreed that I needed surgery to completely excise the styloid processes! :rainbow:

Because of the size of my tonsils (grade 3+), and the location of the styloid processes, he recommended the intra oral surgery to remove my tonsils, which have to be removed anyhow. If I have sleep apnea, removal of my tonsils will really help. It will also help open my airway, which is very small. I might not be getting enough oxygen.

Surgery is January 3rd. :astonished: . He was very up front about what he thought the success rate will be: 50-60% . :frowning:

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Very glad that you’ve seen a doctor you feel confident with after such a long journey, & that you have a plan for treatment.
There is lots of info about what to expect after surgery on here- you can search for that, & also look for the ‘surgery shopping list’ for ideas of what to get ready beforehand. Intraoral can be a tricky recovery, so being prepared will help.
Hope that it goes well, and I’ll be praying for you!

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Thank you!

I am nervous going intraoral. If it wasn’t for my tonsils, I would have really pushed the other way. I did like how my doctor was very open to either route, and we weighed pros and cons.

I did make sure his plan was to completely excise it. I realized I forgot to ask about his thoughts on ligament calcification. My orofacial specialist pointed out mineralization, but the radiologist didn’t point that out.

I had to get an ultrasound as the radiologist thought there might be an issue with my carotids. Turned out that was fine, but I may have been born without a left vertebral artery.

Has anyone ever had random spikes of bone grow into their mouths? Not throat… on the bottom rear pointing inwards. Not Tori.

I’m not confident at all. I couldn’t even face looking here for a month. Only a 50-60% chance… I need to go over and post in the emotional group.

I will do a shopping search. I know I won’t be going anywhere. I am glad that there are lists.

I wish I could just have classic symptoms and a higher chance of success, I wish for many things, but things are what they are.

:slight_smile:

Jules

    December 28

Very glad that you’ve seen a doctor you feel confident with after such a long journey, & that you have a plan for treatment.
There is lots of info about what to expect after surgery on here- you can search for that, & also look for the ‘surgery shopping list’ for ideas of what to get ready beforehand. Intraoral can be a tricky recovery, so being prepared will help.
Hope that it goes well, and I’ll be praying for you!

Just to encourage you, Gwendolyn, doctors usually predict a lower success rate than patients actually get. They simply cannot make any guarantees. I wager that if your styloids & calcified ligaments are removed you’ll get closer to an 80-95% healing result. The ligaments are worth talking to Dr. Futran about before your surgery as the they need to be removed, too, if they’re at all calcified, or you won’t get the optimum benefit of ES surgery. It will also help to get the bone spikes that are growing back from your lower jaw bone(?) removed again. There is a condition where bone “spikes” grow through the rear of the roof of the mouth (it’s the pterygoid hamulus bones - see image below), but I haven’t heard of what you have going on. I can do some research to see if anything turns up.

hamulus

Also, as regards your jaw, I assume it was realigned after its dislocation. The ligaments were likely stretched or damaged & are not supporting the jaw in the correct position currently. I would think there could be some sort of procedure or external splint that could help it move back into & stay in place or maybe some sort of PT.

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Hi Gwendolyn,
I recently had my second surgery, which was intra-oral without tonsil removal, so I’ve now had one of each type. In my mind the jury is still out in terms of which is harder to recover from. The early part of the recovery was infinitely easier for me with the external procedure – much less pain, more energy, and easier to eat and talk after the first surgery. I am still not able to open my mouth very wide and Miss Manners would not approve of how I am getting larger items of food into my mouth in public:) I also for some reason have what is hopefully a temporary increase in trigeminal symptoms on the side operated on first. On the plus side, after the intraoral procedure I don’t have any facial numbness, did not develop first bite syndrome, and I seem to have a better tolerance for lifting things. I highly recommend ice-cold blended foods after an intraoral surgery. And one piece I have not seen mentioned here in posts I have read is that I was unable to open my mouth wide enough for several days post-surgery to fit in medications or eating utensils, so I wound up grinding them up and mixing in drinks. Wishing you all the best with your surgery and recovery whichever type of procedure you ultimately have.

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Thank you so much for sharing your experience, I LOVE your user name. Wow, I had not considered not being able to take medications. My doctor was very straight up - it was going to hurt.

I have been on a soft food/fluid diet, but at least I have been able to open my mouth.

Do you still have your tonsils?

I am the “Avoidance” Queen. My surgery is on Friday, and I have been nervous to read about anything. This is completely unlike me, I am normally very prepared.

What do you think was the most helpful advice you read or heard about?

I had a smaller oral surgery in October, the second night was the worst.

I think I have been avoiding reading - I remember that night, trying to sleep on this wedge. I wish I had a recliner.

Thank you thank you thank you!

Thank you Isaiah (again, hugs). It is a relief to know that doctors might predict a lower success rate…

I already sent him a message to clarify about the ligaments - I will cancel/reschedule it if we are not on the same page. I can’t remember if we discussed it, I was so thankful that he was going to help me!

Jaw -The injury was a bit more complicated, but a lot less painful. As opposed to my lower jaw popping out of the joint, the entire joint was pushed forward. I didn’t have an x-ray (my old primary doctor was not great), even though I asked right after I fell. Two months later I had a 360 CT scan at Dr. Pehling’s (jaw guy).

My upper cheekbone just above the joint- he did not see any fractures, but he didn’t send it off to be read either. He was more concerned about everything else. Before I fell, he had made an appliance to help with clenching, but it works as a stabilizer. We thought I had a bone bruise, but it hasn’t gotten better. Either way, he can’t do anything until both sides have healed. The last scan showed it is still healing. (Flattening and concave contours)

The pterygoid hamulus image is really interesting. I wonder if it is similar? I have a photo (terrible as my tongue is in the way) that I will try to attach.

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Hi Gwendolyn,

I am so glad you now have two good doctors on your team. Dr. Pehling sounds like he is being practical in his approach to your jaw healing & alignment. Sometimes these things are a “wait & see” proposition as they do iron out on their own. I hope that will be true in your case. With dislocation, as I’m sure you know, it’s not just the joint that’s effected but also the surrounding/supporting muslces, tendons, ligaments & fascia. It can take time for all these elements to heal & work their way back to what was normal for them. Sadly, in cases of extreme trauma (such as yours) they do find a new normal & need to be coaxed back to the old normal or close to it.

Getting your ES problem & tonsils dealt w/ should also help w/ your jaw misalignment as the pressure into soft tissues in your neck from the styloids & calcified ligaments won’t be helping with the things your body is trying to deal with above the neck i.e. in your jaw.

I would be interested to see the picture of your bony lower jaw growths if you can get them to send.

It’s good to hear you sounding optimistic. Cling to hope. It will carry you to healing like wind in a sail! :sailboat:

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Hi Gwendolyn,
I wouldn’t worry too much about reading about your surgery – do what makes you feel most comfortable. If putting things out of your mind is that thing and you already have taken care of the basics, I’d go for it. You asked about the best advice I received. The absolute best advice from this group for me was to anticipate that symptoms are going to wax and wane after surgery for several months. I had assumed it would all be consistent improvement after surgery, but that has not been my experience with either procedure. Instead, I feel good for a bit and then might feel like I did pre-surgery for a bit. In terms of prep, if your post-surgical situation is like mine (and it seems like no two of us have the same experience), you are prepared if you have what you need to keep your head elevated when you sleep, ice packs, a strong blender that can mix ice into your smoothies, a method to crush pills if needed (I used a rubber mallet and pills folded into parchment paper and alternated taking Advil and Tylenol every 2 hours), support people who are advised in advance not to ask you to talk much, and a few good shows cued up to binge watch during your recovery. You will probably be asked not to use straws for the few days after surgery because the suction created in your mouth can interfere with healing. For me, the intraoral surgery hurt quite a bit for about 10 days and then the pain subsided quickly and fast. Be well. Soon this will be in the past!

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I am freaking out… I think I should reschedule my surgery.

My assigned surgery nurse is out until January 2nd. I received a note back from another nurse saying I should ask the surgeon RIGHT before surgery about if he is planning on removing the calcified ligaments.

I got an email from my nurse last week that included several PDFs on Throat surgery and Tonsillectomies. The information contradicts itself- I should take NSAIDs, I shouldn’t, etc.

My pain doctor was going to speak/coordinate with my ENT surgeon and primary doctor as I am a chronic pain patient on opioids. (I am not fond of this, but I tried EVERYTHING, and have additional issues).

The University of Washington is an excellent facility, and I like Dr. Futran, but because of vacations and the holidays- I think I might be better off rescheduling.

Help!

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I feel nervous about this - you’ll kick yourself if there is some kind of misunderstanding or oversight. What’s another week or two for peace of mind.

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Oh, thank you for saying this! I can’t imagine not knowing, then having surgery on a Friday just after New Year’s, with doctors on vacation, right before a weekend.

SewMomma - I have read your success story, you give me hope - thank you!

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SewMomma has given you good advice. Better to go into surgery feeling well informed & like all the cards are on the able rather than worrying that a few might be missing. Another week or two is worth the wait for peace of mind.

As far as NSAIDs go, most doctors do not recommend them right after surgery because they thin the blood & thus can cause post op bleeding. I think the usual protocol for NSAIDs is not to start them until 7-10 days post op but that’s up to your doctor to make that call.

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I am so sorry the ramp up to surgery is so stressful. In addition to the excellent thoughts that others have posted already I will just add that it might be worth calling in the morning, expressing all of your concerns and seeing what the doctor has to say. It is possible that many of these issues could be resolved very quickly, and you seem to trust the work of the doctor and the medical center. Ultimately though it is of course an absolute given that you have to feel comfortable with your treatment plan and ready to move forward or it is not the right time. Also, although recommendations for post surgical ibuprofen may differ across doctors and across different surgeries, I think there is good agreement that it is a problem to be taking this drug in the week prior to surgery, so if you are using nsaid now because of confusion about instructions I’d let office know

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Just an FYI —Before my tonsillectomy/Es oral procedure my doctor had requested I stop Celebrex (an nsaid) for 10 days before surgery due to risk of bleeding when the scabs fall of during healing. Truth be told I forgot to stop it and took it Up to 5-6 days before. I didnt have terrible bleeding but I was nervous about it ! Didn’t restart them until 2 weeks post op and that was due to an inability to swallow altogether due to pain. I had to be on liquid pain meds. (I’m also a chronic pain patient—ankylosing spondylitis).

I said a prayer that you’ll be led to the best decision for you and that you feel a peace.

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Praying that you feel calmer about this & can get your questions answered- I’m UK so have a different health care system, rescheduling is not as simple for us! God bless, hugs for you…

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Hey friends,

Thank you for helping me make my decision.

I rescheduled the surgery until next Friday, the 10th. I sent a message with all of my concerns as I could not get through to anyone (holiday). Friday I have an in person pre-op visit to go over everything. For example, not taking NSAIDS!

My pain levels over the past 2-3 weeks have been a 9 out of 0-10. I am never a 9. It is mostly from my left ear being clogged. It is actually feeling a bit better, but I am almost out of pain medication.

My pain prescription was supposed to be filled yesterday, but New Year’s Eve and today, everything is closed. :cry: My 3rd New Year’s Eve I have missed. Truth be told, even if I was completely fine, I would probably fall asleep anyway.

I see my primary doctor tomorrow and we will come up with a plan to get me ready. :rainbow: :smiley:

Happy New Year!

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I am so glad to meet another chronic pain patient! (We all are, in our one way).

The NSAID issue. :scream: I am going to browse some of your posts. :smiling_face_with_three_hearts:

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Hope you can get some new pain meds & get some answers to put your mind at rest…

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Gwendolyn,

So good to hear you were able to put surgery off until your questions are answered & you feel more at peace about it. Also good that you were able to get a surgery date next week & didn’t have to wait for another month.

I hope you were able to get your pain meds today.

Happy New Year to you, too!

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