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Eagle Syndrome - Online Support Group

Help does this sound normal for Es

I need to vent to people who may understand.
Last night while sleeping I got a pool of saliva that went down the wrong tube because I count swallow properly I began choking and aspirating till finally could breathe again.This is happening more and more when I drink or eat.I did have a swallow test but he said I was only going down partially and coming back up so I was ok.But also said my food was not going all the way down my esophagus but that would be a separate test.
Now I’m sick tonight,
Dr who is not real familiar with Ent said he would do surgery tomorrow on what ever side I felt was worse.
I declined because my husbsnd has to have a donor block and total shoulder replacement in 10 days and needs my care,
Also I’m having a CT contrast on June 6tg ,that hopefully will show compression cause it seems anymore both sides are bad.First for years it was right side,
But now when I lay on left side I get a loud wishing. And my heart beat is so loud and sends pain to my face.Right side Constant sharp stabbing pain behind ear.Cant bend over or turn head or its excruciating pain pain does travel to face and eye too…My neck and throat never do not hurt I am bed most days or half days…And strange when I’m laying down my heart rate actually gets pretty high for resting witch I don’t understand.
Do these symptoms,sound normal.
Im hoping my husband will be well enough for me to get one side done by mid July .
But I’ll admit with the choking and swallow problem ,heart palpitations ,the list is long .I get so afraid something is gonna happen to me.
Any Advice ,Thank you for listening to me

Hi Helenee,
It is scary, & I feel for you, especially if you’re trying to look after your husband too, but hopefully you’ll be a bit reassured that your symptoms can be ES. Swallowing is often difficult with ES, & quite a few members have had choking episodes. Although their swallow tests haven’t always shown any problems. Some people have had problems with excess saliva- is that happening as well?
Hearing your heartbeat can be pulsatile tinnitus; I had that, it was caused by the jugular compression, & has improved loads since surgery.
The sharp pains could be nerve pain; there are medications which can help while you wait for surgery if you’ve not tried any? The styloids are close to several cranial nerves where they exit the skull so can cause pain in the face, ears, jaw & throat…Eye pain can also be caused by pressure on the carotid artery; hopefully a CT with contrast will show that, although if it’s worse when your head is in a certain position then unless you can get a CT like that then it may not show.
Palpitations can be caused by pressure on the Vagus nerve, but would be advisable to get checked out.
I hope that this helps- there’s more detail about the symptoms & what might cause them in the Newbies Guide section if you need it.
And have you had a look at the Doctors in the Doctors Info section? If your doctor has experience & you’re confident that’s great, if not it can be worth seeing someone with experience.
Thinking of you, & sending you a big hug!

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Hi Helenee,

I’m so sorry you’re so sick from ES. I also had the choking issues prior to my ES surgeries. I choked a little on saliva but more often on my food.

I agree with everything Jules said & will add that sleeping w/ your head elevated, might help w/ the pooling saliva & choking. You can experiment w/ how much elevation you need to make a difference. Since you’re headed to ES surgery eventually, you could buy yourself a wedge pillow (Bed, Bath & Beyond has a good selection) now as you’ll need to use one post op for sleeping to help keep neck & throat swelling reduced.

How hard for you that both you & your husband have major health problems at the same time. You’ll be a new person after your ES surgery(ies). I know you have it bilaterally & depending on who you have do your surgery, your styloids may be resected both at once or in two separate surgeries (we feel this is safer than all at once).

I can’t encourage you enough to see a very experienced ES surgeon as your vascular problems are significant. Even if you can’t travel far from home, you should try to schedule w/ a skull based ENT or head & neck surgeon who is very familiar w/ that part of the body. I feel some concern about the surgeon who said he could do your surgery “tomorrow” as most surgeons who are experienced w/ ES are booked farther ahead than one day. Please talk to the surgeon you’re thinking of using & ask these questions:

  1. Will he do your surgery externally or intraorally? (Because of the extent of your calcification, external surgery will most likely give you a better end result)

  2. How much of the styloid process will he remove? (Having it removed at the skull base, if possible, will give you the best end result.)

  3. Will he remove the stylohyoid ligament from the tip of the styloid process down to the hyoid bone? I recall you have calcification pretty much from your skull base to your hyoid bone so this may be a mute point.

  4. Will he do one side at a time or both at once?

  5. Will a hospital stay be required or is surgery done outpatient?

Finally, as Jules noted, if you do get a CT w/ contrast, make sure to let the CT technician know which head position makes your symptoms the worst so (s)he can put your head/neck in that position during the CT scan. This will allow your vascular compression to be more visible.

We are ALWAYS here for you! I will be praying that your symptoms are reduced over the next month so you can help your husband AND that he will heal quickly so he can in turn help you.

:hugs:

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