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Eagle Syndrome - Online Support Group

Who has been helped by surgery with this awful disease?

Hi Meman,

The SCM is innervated by the accessory nerve which is indeed one of the cranial nerves often irritated by ES. It’s possible that whatever position your elongated styloid &/or calcified stylohyoid ligament end up in when you’re lying down, there is pressure being placed on your accessory nerve & thus you get the jumpy muscle response. There is a chance this problem could go away after you have ES surgery. You would need to remember it has been a problem for many years so it would possibly take many months post op for your problem to fully disappear. Additionally, your heart issues could be caused by an irritated vagus nerve. There has been much forum discussion recently on the many body functions affected by the vagus nerve when it is over or under stimulated. Heart rate & blood pressure are for sure among those. The vagus nerve is almost always affected by ES in some form or fashion. I had low bp & heart palpitations which resulted in breathlessness & light-headedness when I exercised as part of my ES symptoms.

At some point, vanity needs to be put aside in deference to being able to live life normally & fully. As JustBreathe & BrooklynGirl noted, lip droop, tongue issues, first bite syndrome & the like can result from ES surgery but don’t always, & almost always when they do, the nerves heal & those problems go away some months after surgery. They are inconvenient but not life threatening & for the most part do not affect quality of life. Sorry if this sounds harsh, but I feel strongly on this point.

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I believe there’s a research paper mentioned in the Newbies Guide section which shows that if a certain area of the carotid artery- the carotid sinus- is compressed by styloid processes it can also cause heart arrythmias, as well as the vagus nerve.

We will pray for you. By the time I had external surgery, I had no life. We have fought high blood pressure, migraines, heart palpitations etc. The drcision to have surgery is yours alone. Suggestion, right now a baby step. Start a sesrch for the right doctor. External surgery with an experienced SKULL BASE DOCTOR. If you find the doctor, I think you will realize that there are doctors who do know your situation. At that point, you will know that you have an option available. At that point, some of your fears may be reduced, then you can make a more informed choice. No one will force you into surgery, but you will know you options better.

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Hi Meman,
First, let me say I am so sorry you have Eagle syndrome but also may I say congrats that you got a diagnosis and options lay ahead.
Last February I had surgery on left side - styloidectomy. I thought I had a tonsil stone but it was a little more than a stone. The calcified styloid was shaped like a horn and was pushing on my tonsil and also on inner structures including my veins and arteries, according to my ENT. Gross, huh.
I had very subtle symptoms, but also was having some memory issues and feeling like someone was pushing in that area. Also at night for some reason, I would sleep until around 3 am and then have what I thought were “sinus” headaches. I think this was going on for maybe years. Progressed.
Most of the symptoms have resolved or are minimal now because I elected to have surgery. My quality of life is improving and I feel like I am getting my happy self back. A new time in life.
Surgery was done intraorally- The ENT made a cut underneath my tonsil and took out the styloid piece.
I used a lot of ice packs and sat up in my husband’s “big boy” chair after surgery but it went really well and I healed quickly.
The glossopharngeal nerves got a little excited and I had some ear/neck pain for some weeks but nothing outrageous. I am happy to say the headaches have resolved and well, now just occasional sinus headaches.
Meman, there are the major blood vessels and nerves running in there. Definitely risks but they will go through that with you. Make sure to ask a lot of questions and do your research so you feel comfortable. Just remember you have options.
My thought was my quality of life was getting worse so the risks of surgery were worth it for me.
Hope that helps Meman.
If you do elect to have surgery just remember…ice packs are your friends!
Lisa

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Hi Meman, how are you doing? Just thinking of you and hope you are moving in a good direction.

I am a former professional athlete and I have recently been diagnosed with ES, my symptoms started almost 2 years ago, it all started a few months after I suffered a blow to the head which I still wonder if it’s related. for the past year I though that I was suffering from post concussion injury.
I’ve had so many weird random symptoms that were inexplicable which now I know is pretty normal for people with ES, my worst symptom was and still is dizziness, other symptoms I’ve had are headaches, head throbbing by temples, night chills, jerks while falling asleep, muscle twitches in different places in my body and still till this day, heart palpitations, feeling of something in my throat all the time, tense neck, for a about a month I would wake up and feel like my brain was buzzing, sensitive to high pitch sounds, load noises and bright light, tingling in left arm and ball of my left foot, pain in ears and feeling of fullness in my ears, vision problems, brain fog and unable to concentrate, feeling fatigued, weak right side limbs. I had so many symptoms and Dr’s couldn’t figure it out for about a year and a half and trust my every few weeks I was doing different tests seeing lots of different Dr’s I know how frustrating it can be. I tried all the natural alternatives to seek healing and relief, massage therapy, acupuncture, cranial sacral, rolfing and finally the chiropractor was the one that helped me the most, seeing him every week kept me in a functioning state, many symptoms vanished in my case however the dizziness and a few other symptoms still remain and at 39 just I refuse to live the rest of my life with it so I am having a bilateral styloidectomy in 6 days. Hope my experience can help others dealing with similar symptoms and know that you are not the only one out there. The entire process is long draining and overwhelming but I never gave up on looking for answers and I am still not 100% sure that all my symptoms will go away after surgery but its a risk I am willing to take to feel healthy and normal again. I have a lot of faith that this will be behind me soon. Be positive and hang in there.

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Hi Coco,
All the best with your surgery.
BG

Thanks for sharing your Story CoCo . I wish you the very best with your surgery and treatment. I hope you get relief and encourage me to get the guts to do something about it myself. I have many similar symptoms as you. Especially with the twitching. Mine always bothers me the most when I lye down to sleep and put pressure on my neck. Such an awful syndrome and I feel for everyone who suffers from this terrible condition. My thoughts are with you on your journey, please share your outcome with me. Thanks

This is great that everything worked out for you. Thanks for that information. I hope you have alleviated all of your symptoms and that you may feel normal again. Please keep us posted how thing are going as you progress.

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Thanks Meman, I will definetly keep you posted on the outcome of my surgery.

Hope it goes well, lots of info on here about how to prepare & what to expect if you’ve not read that yet…will pray for you!

Thank you!

Thank you Jules, I’ve been reading lot here for the past 2 months it’s been extremely helpful and encouraging. Thank you all for sharing your stories it really does make a difference.

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Hi coco,

Thank you for sharing your story. I will keep you in my thoughts and prayers as you head to your surgical date. I am 2 weeks post-op from surgery on the left and lot of my symptoms are gone or diminished. I am hoping that some continue to diminish as the swelling goes down. My biggest suggestion for surgery is research this site for post-op suggestions…you are a lot younger than I am so don’t try to over do it…listen to your body. I set some physical goals of walking and pushed myself too soon because I was feeling so well and had some bad days…pace yourself. Be gentle with yourself as you heal. ICE is your friend as is elevation using a wedge pillow. I sleep in a recliner too sometimes that helps the vascular symptoms and seems to put less pressure on the back of my head where I get some lousy headaches. I ate a lot of protein/collagen and my incision is healing great. Soft foods will be your best bet because chewing can be a little rough. I like protein shakes and made a lot of those. Best wishes for some peaceful days leading up to your surgery. Keep us posted on your status.

Kay

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Thank you Kay for all your advise. I will definetly follow it, I definetly want to have a smooth and fast recovery:-)
Wishing you all the best for your continuing recovery aswell.
Coco

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Hi coco,

So you’re taking the GIANT plunge & having bilateral surgery in one fell swoop. It will be nice for you to be done w/ Es in one surgery. Just a heads up that it will take you a bit longer to heal & your pain level will likely be higher post op so don’t be discouraged if you can’t jump on your feet & go within a couple of weeks post op. Since you’ve been reading a lot of posts, you likely have an idea of what to expect after surgery.

I will also pray for you to have a “text book” surgery. Please remember that we are here for you & want to support you however you need as you recover.

:rose:

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Thank you Isaiah, eveyone here has been incredibly supportive and I really apreciate everyone’s encouragement. I will keep you all posted on my progress.
Aloha

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Thank you, coco. If I counted correctly, your surgery was today (or tomorrow?). If it was today, I hope you aren’t in much pain & that you’ll be back on your feet soon.

Ice your neck often - 15 min on & 45 min. off 4-5x/day. Sleep w/ your head elevated up to 30º which is almost sitting; stick w/ your pain med regimen for at least the first week post op. Days 3-6 are when the swelling will be the worst & when you’ll feel the worst. Know that after that, you should start feeling better bit by bit. It may be baby steps toward healing but even those will help you get well over time.

:hugs: Sending a gentle hug

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Yes, hope & pray all went well & that you recover quickly, & soon feel the benefits of surgery!

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Hi all, my bilateral styloidectomy went well yesterday no facial nerve damage just a little numb on the left side of my cheek tongue is fine, jaw area is just a little sore, they had to put in a breathing tube but it just feels like I have a sore troat. I was discharged the very same day which was great. Was pretty out of it yesterday and had some pain, I tried to manage it with just tylenol but eneded up giving in to the stronger pain meds I was prescribed. Last night was uncomfortable sleeping but I managed and have been iceing the areas off and on which is helping tremendously. They took off 3cm on both sides. So far its hard to tell if my dizziness is gone with all the swelling and side effects from the pain meds. I know that with time everything will improve. I am uploading a photo of the styloids that were removed, my left side was very interesting as it had a sharp point end looks like a rose thorn. I cant believe that was in my neck pushing against my jugular vein. Crazy. Glad they are out. Thank you all for thinking of me and following up. I went into surgery with such a calm positive mind set thanks to this incredible support group. So much kindness, knowledge and encouragement. Cant thank you all enough. I will keep you all posted of my progress in the upcoming weeks.Screenshot_20190918-174352_Gallery