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Eagle Syndrome - Online Support Group

New member, deciding about surgery

Hi there!

I’m so happy to have found you all!! So many doctors acted like I was crazy. Nice to know I’m not!

I live in Denver. I have a long history of TMJ, even longer history of Chronic Fatigue Syndrome. In early 2018, I suddenly developed throat pain on swallowing, right ear pain, right tinnitus, left eye pain, weird nerve pain up my scalp and in my left sinus. Started having panic attacks, thinking I had trigeminal neuralgia. Saw a neurologist, he found white spots on my brain, initially diagnosed me with severe cerebrovascular disease, and I spent a month thinking I was on the verge of a stroke. Subsequent tests ruled that out, but didn’t give me any answers. Went to a LOT of doctors. About a year ago, the fourth ENT I saw told me I had Ernest Syndrome on the right side, but that he didn’t treat it. Got a steroid injection, that didn’t help. Last November I lost consciousness in a restaurant bathroom. In January, I started experiencing really alarming dizziness. My osteopath recommended Dr. Hepworth, and he did a CT and Ultrasound. It was the ultrasound that revealed the Eagle Syndrome. Apparently my left jugular is completely occluded. Dr. Hepworth put me on blood thinners, which have definitely helped with the dizziness. So now I am getting more tests, moving toward the surgery decision. Being here and reading through the posts, I’m seeing the surgery is a lot more complicated than I realized! I’m so paranoid about nerve damage. I hate having these facial nerve problems, but the only worse thing I can imagine is developing more facial nerve problems from the surgery. I have a lot of questions, but I won’t ask them all here. Just wanted to start by introducing myself and telling you how glad I am to have found you, and to not be alone in all of this craziness any more!!!

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Hi, & welcome to the site!
Surgery is a worry, & there are risks, but doctors do monitor the nerves as they operate so can see if the nerves are getting stressed. You can reduce the risks by sering an experienced doctor, which Dr Hepworth is.
If it helps, I’ll share my story- I had ES symptoms worsening over a year, mainly ear pressure & aches, neck pain, jaw aches & TN. I took Amitriptyline, which really helped me with the nerve pain, so I decided not to have surgery as I was worried about the risks. But then after a year or so I started to get vascular symptoms- dizziness, off balance, head pressure, pulsatile tinnitus, & some quite scary feelings, plus I started to get numbness & tingling across my jaw & face. I realised that things were worsening & that I couldn’t keep leaving it, luckily I found out about an experienced doctor on here & was able to have surgery. ( I had bilateral jugular compression) The surgery has helped hugely with the vascular symptoms, & the nerves have improved- I still have some pain, but not the numbness etc.
So I think although there are risks with surgery, you have to think about the risks of not having it too, & if you’re starting to get black outs, then that is a real worry.
Hope this helps!

Thanks so much, that really does help! I am realizing that, while I could probably live with the nerve symptoms, I probably can’t ignore the vascular. The Plavix really helps with the dizziness, but I’m getting a weird tingling/deep ache in my arms that I suspect is a side effect. I’m cutting it out for a few days to see if it goes away. Helps so much to hear about other peoples’ surgery experiences!

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Hi Bopper,

I can also offer my experience w/ ES. I had it bilaterally which caused multitudinous symptoms. My symptoms came on gradually over 3-4 months. I had face, neck, shoulder & eye pain. I had whacky blood pressure drops when I was exercising which caused my heart to race & I would feel very light-headed. I also had heart palpitations & a numbness/deep ache in my tongue & my gums would feel like they had been scalded by hot water. I had troubles w/ choking when I ate or drank.

I was blessed to be accurately diagnosed w/ ES w/in a few months of the time my symptoms started, & because they were affecting my life in a very adverse way, I elected to have surgery. My outcome was very similar to Jules’ - most of my symptoms are completely gone. I do have a little numbness along my jaw line on one side, & some nerve pain on the other side near my jaw joint, but only when I press on the area. If I leave it alone, I don’t feel it. I have been able to return to all my normal activities & live my life fully again. I had my surgeries in 11/14 & 8/15 so my recovery has stood the test of time.

In the hands of a competent & knowledgeable surgeon such as Dr. Hepworth, your surgical outcome should be good if you choose to go that route. :blush:

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Thank you!! That really does help. Are your remaining symptoms lesser versions of what you had before surgery, or are they new since and/or because of the surgery? Or can you even tell?

Every journey is so similar, yet so completely different. Identifying with so many of the symptoms described is almost comforting in a strange way. I guess knowledge and empathy are key.

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Hi Bopper,

Great question! Some of my remaining symptoms are very low grade versions of what I had w/ ES (mostly very slight neck pain when I overdo. I also struggle w/ tinnitus but that’s been for the long-term i.e. since childhood. ES may have made it worse, but I do notice it increases w/ stress, dehydration, over-exercising now. New symptoms are First Bite Syndrome which never fully resolved after surgery but now, 5 years after surgery, has nearly disappeared. I had some nerve damage to my glossopharyngeal nerve (it was wrapped around my styloid process & had to be unwrapped) which has left me w/ a little pain near my jaw joint on the right & very minor tongue dysfunction - not impactful in my life. The pain near my jaw joint only hurts if I poke it so I don’t poke it. :joy: I really see these “leftovers” as reminders of how far I’ve come since I had ES.

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I’m a beginning of this group as well. My symptoms are only 4 months of numbness in throat ears, sore throat, ear aches and numbness at ears. Went to Ent and had CT with contrast and waiting for result. I’m not excited about surgery and hoping there is a way to live with these intermittent systems. Surgery seems like last resort to me.

I agree, not excited about surgery as well. And I could probably live with the numbness and weird nerve sensations. But for me, I think the vascular component is going to tip me toward surgery. I don’t think I can ignore it forever.

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