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Eagle Syndrome - Online Support Group

Success Stories!

Thank you that’s very interesting and somewhat reassuring!. My gastroenterology consultant showed me the photos from my endoscopy and they do indeed look normal. He’s going to do a manometry test for motility, but I guess irritated nerves may cause muscles not to work as they should. These symptoms are so changeable and bizarre! I’m mostly struggling with the strangulation pains at the moment.

Can’t tell you how valuable this forum is when you are new to ES and trying to make sense of it all!

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Hi julia ~

I suspect gut motility can also be reduced/influenced by nerve irritation farther up the chain. It will be interesting to see what your results are from that test.

Agreed! ES symptoms are bizarre & changeable & can be scary. So glad you’re finding help, info & support here.

I am one week post op for the left side external removal of bi-lateral Eagles. So far the poking, throat and tongue pain and difficulty swallowing are gone! The right side reminds me what that feels like all of the time - maybe that’s a good thing?

I do have quite a bit of numbness from the surgery - from my jaw to my chin. I keep biting the inside of my left lip and my smile and speech pattern is crooked. I have been told by many that it is temporary, but I am 'known" for my smile, so I am bit down by it all. The numb nerves are coming alive and at times feels like the “pins and needles” that one gets after a foot “falls asleep.” The pain from the nerves in my jaw, ear, tongue, teeth and cheek are more consistently worse then the pain before the surgery.

At the last minute, my surgeon offered me the option of internal surgery, which completely through me for a loop. Now I wonder if internal would have been easier on the nerves. I do not have any pain swallowing from the external so that is a huge plus.

My surgeon did not use steroids during surgery or prescribe them post surgery. The swelling was as to be expected for neck surgery for a few day but the ice helped. The ice pack became my best friend. I am still swollen but markedly less. The incision site has started to get somewhat hard but no additional swelling. The surgeon prescribed oxycodone for post op pain (5 pills) but I have not taken them, only Tylenol. Honestly, the worse pain was directly post op under my jaw (pain level 8! Not quite the pain level of an emergency appendectomy). I think that the pain management could have been handled better. My IV was already removed so the only pain relief offered was a pill. I was extremely nauseous from the anesthesia so I was given anti-nausea medication. I took a good hour before the pain and nausea were under control. Once the nausea med wore off a few hours later I was then nauseous for the rest of the day and into the night. I chewed on raw ginger which maybe helped somewhat.

Other symptoms I had on and off before surgery seem to be back in full - heart palpitations, stomach issues and the pain in jaw and face mentioned above. I am still dizzy. I never expected the surgery to relieve anything but the pain as noted in my throat and tongue, but I didn’t expect the others to get worse.

At only one week post op I have to step back and have faith and let time do its magic. I am grateful that I am were I am and for the general, good overall health I am in.

My post op appointment is tomorrow via teleconference. I hope that the surgeon has some additional insight to share.

Thank you all for listening to my story.

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Hi BG -

You’ve just navigated the period of most intense post op swelling (days 3-6). You should begin to notice little positive changes over the next week w/ healing of pain, numbness, lip, etc., slowly progressing over the next 7 weeks. It may take several months for your lip droop to recover. Get some laughs out of it while it’s there. Always good to find the lighter side to a bad situation. If you look back at redbird773’s post op posts, she went through some similar problems to yours related to heart & maybe stomach issues. She was on heart medication & was able to stop it completely three weeks post op in spite of heart symptoms in the first week or two after surgery. Patience is the name of the game!! Additionally, since you have bilateral ES, I can almost guarantee that at least some of what you still feel is coming from the remaining styloid.

My doctor Rxed Prednisone as part of the post op recovery meds. It combined w/ ice made a HUGE difference in helping w/ post op swelling. You have a lot of internal inflammation right now - it’s your body’s way of protecting the healing tissues (think of having a cushion around them). However, that inflammation puts pressure on nerves & tender tissues thus creating pain. This healing cycle is how our bodies get us to rest & keep our lives less busy. They need to focus on healing not “doing”.

Glad you have your post op tomorrow. If you’re pain/swelling are still pretty significant, I’d ask for an Rx for Prednisone. Even five days worth could be very helpful. It made a huge difference for SewMomma.

I’m sorry for your post op experience! My IV was left in after surgery & I was given anti-nausea meds via IV. One dose was all I needed. I understand that others who’ve had extreme post op nausea have been given patches to wear for 24 hrs. You might consider asking for that if/when you have your second surgery. In spite of your misgivings regarding external surgery, I firmly believe it’s the way to go (I’m not a doctor…). There are disadvantages/advantages to both approaches, but I feel the advantages of external far outweigh those of intraoral.

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Hi Isaiah,
Thank you for the well written response. I have to be patient and gentle to myself and let the healing process do its thing. I will update after my post op appointment.

Peace to all.
BG

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Hello thank you for sharing your experience, it is really helpful. I wish you a speedy recovery.

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Let us know how the appt goes for sure. So great you can do it from home. I love that! I started my steroid on day 20. It whipped things into shape big time for me. Maybe it was just the right time in my healing process, I don’t know but took me to a new level in my recovery. I feel lucky my doctor wrote for 30 hydrocodone pills leaving the hospital. They were great and I took every single one. I also wore a nausea patch during surgery and kept it on for 4 days.

Not that you want to think about having the other side done at this moment in time (do you think you’ll need it?) but it’s good you shared all this with us so you can go back and read it. I felt like I went into my second surgery kind of ahead of the game because of what I learned in round one.

I do agree that there’ll still be swelling which could account for the symptoms. I know we all want an instant cure but unfortunately it does take time. :confused: I think intraoral often seems to be way more painful swallowing etc & infections are more common, so I think you did make the right decision for your surgery. Will keep praying for you & hope you see lots of improvements soon :bouquet:

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So…

I spoke with the surgeon. There was no real complication but he did have to move/stretch the nerve that controls the motor movement of my lower lip, in this case the left lower lip. The bright side is that it doesn’t droop and if I smile with my mouth closed its not really noticeable. But, when I talk or smile showing my teeth or grin it is very noticeable. I understand the body is amazing and this should go away but this was one of my biggest fears of the surgery. My sweet daughter and mother say its not that bad, but my boss noticed it compared to the Bells Palsy his cousin has. Yay, that was fun. (cue the sarcasm) I think he was trying to say that it could always be worse.

The pain of the nerves healing along the incision, along with the pain in my ear can very painful - similar to pre op pain. My ear feels full and maybe its why I feel a bit off balance. My heart palpitations are diminishing (another bright side) but still feel a bit lightheaded. I am still taking it easy but I am back at my desk job full time today. I started with half days Monday and Tuesday to ease back in.

The styloid removed was short, but I don’t think I’ve seen one as thick. I saw a picture of it on the tele-appointment but I do not have a copy of it to share.

The surgeon did say that motor nerve would heal, but of course he couldn’t promise 100%. He wants to see me again in two months. Does anyone have any tips for rehab of the nerve, comforting words or any other advise?

I would like to thank everyone here for the support.

Peace to all.

Hi SewMomma,
I remembered that you had a problem with your tongue from your first surgery and went back and re-read all of your posts. You have been through a lot and sharing it all was healing for you and supportive to those of us going through similar situations - then and now. Thank you for being an inspiration. You really had a lot of patience and fortitude and I hope and pray to be as patient as you.

BG

Hey gal,

I hope you’re not expected to do a whole lot at your job right now - although maybe work can be a distraction. Designing the next skyscraper in Manhattan? :stuck_out_tongue_closed_eyes: Don’t you love how everyone has a story about someone they know and the health problems that they had and how yours is not as bad as theirs in comparison? Like that helps us! Good intentions, right?

The nerve thing almost did me in. My tongue was wicked crooked. My speech sounded like I had had a stroke. Very slurred. Slowly, ever so slowly, it straightened. I did pull on it a tad a couple times a day and do a little stretching - maybe it expedited the recovery some. I also massaged the incision area 3 times a day for 10 minutes after 4 weeks when I felt like touching the site. (4 weeks is tomorrow for this surgery and I’m still a little icky about pushing on it too much so we’ll see). My thought was that massaging it would wake up some of the nerves and I really do feel like it stimulated the area and made an impact. 10 weeks was the turning point because that’s when I made the video for the surgeon and he approved me for the second side. It’s better now at 5 months. It all came together. Yours will too. I know you’re self-conscious. That’s normal. You say you are known for your smile - ironic, I was known for my voice. I was a news reporter/anchor out of college for a few years and love public speaking. All of the sudden I have a speech problem? You have a great smile and now it’s messed up. What’s up with that, universe??!!!

Your kind words are very appreciated about my posts helping you. Funny when I am writing them I feel like I am crawling along in a hot dessert just desperate for help, advice, feedback, encouragement, answers. I guess just knowing someone has been there helps us feel that sense of “I’m going to be ok”. You are going to be ok , Teresa! We’re here with you every step! :heart_eyes:

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Hi BG!
I just did some reading on innervation of the lower lip. Found a super, easy to understand article on Google. For starters, the lower lip is innervated by the Mandibular nerve which is a sub-branch of the Trigeminal nerve (cranial nerve V) which has three major branches. The Mandibular nerve has both sensory & motor functions (not true of all branches of the TN).

Because I suffered the same sort of tongue paralysis as SewMomma, & went through a bit of therapy, I was able to give her some exercises that I believed helped her to regain tongue function. Using the same principles as used in those exercises, I can suggest some simple work you can do to help your lip nerve regenerate:

Place one or two fingers gently on top of your lip on the weaker side. Apply gentle resistance w/ your fingers as you try to raise the weak part of your lip. Hold for a count of 5 then let it relax. Do this 5x. Next do the opposite action i.e. put your fingers just below your lip, applying gentle resistance as you try to let the lip “droop” using the same count & number of reps as before. You can also alternate the lifting w/ resistance then the lowering w/ resistance. Do these 3x/day.

These instructions may be as clear as mud so I’ll make you a little video to illustrate what I mean & send it to you privately later. Anything you can do to make that weaker part of your lip “work” will encourage the nerves to begin healing & the muscles to kick back on. Additionally, gently rubbing your lip w/ a variety of textures i.e. washcloth, soft toothbrush, even gently poking it w/ a fork or tooth pick (sounds worse than it is - there should be no pain!!) will help stimulate the nerve. You can also try gently massaging your lip w/ your fingers.

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:pray: Thank you. I was hesitant to google anything on this as I didn’t want to find anything that may have been negative and set my “trying to be positive” mood back.
:revolving_hearts:

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Hi Sew Momma,

I cant thank you enough. I am sorry that you had to go through all you went through, but it sounds like you have landed at your destination and no longer waiting at the airport. I loved your analogy. You have such a wonderful way with words. Have you ever thought of writing as a new career? After, of course home school teacher, mother and wife.

Work is a good distraction. Staying home with too many thoughts in my head was not working, though I would love an afternoon nap.

I have my ups and downs but I am trying to stay positive. Good things come to those who wait. Well, what else is there if not time?

Peace,
BG

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@Isaiah_40_31
Your description of the exercises was very clear - like the clear waters of the Caribbean, not muddy at all. I have already started.
Thank you again. I am so very grateful for the support.

Look at you with the airport thing, I just thought of that the other day! I think I’m getting to know the new land I’m in of good health.

Thank you for the complement on my writing. I am in fact a paid, freelance writer. I’m starting an intensive writing program with my older kids this year so, we’ll see if we have any budding new writers in the house. :wink:

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HOORAY! Add to them gently twisting your lip back & forth w/ your fingers & gently biting it w/ your teeth. Anything that you can think of to stimulate/irritate the nerve will help get it to wake up faster. Everything you do to help nerve stimulation should be PAINLESS. You should also do them whenever you think about it & not just 3x/day as I originally said.

:blush:

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One of our members, Bandruid, had a similar post-op experience, you could try messaging her to see if she found anything to help (other than time…). The B group vitamins are supposed to help with nerve healing, check it’s okay to take if you’re on any other medication, might be worth a try. Big hug…

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Julia - you are not alone is hoping the CT shows something…I have been there SO MANY times! And yes, that is completely normal even though it sounds to the contrary. After my IVUS to test for jugular stenosis and pressure gradient the vascular surgeon came to me and said it was very positive, my response was an exasperated “THANK GOD”… he looked at me with a small knowing smile. Surgeons need hard evidence to move on to perform surgery, which is a very good thing. The affirmation after so much suffering is unspeakable. I hope you find an answer that is tangible so you can move on with your life :crossed_fingers::pray::purple_heart: Waiting with you, keep breathing…

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Hi Julia,

I’ll be praying your CT scan shows definitive evidence of what’s going on so you are accurately diagnosed & can receive treatment accordingly. I think this is what JustBreathe said, but she’s more articulate than I. :upside_down_face:

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