Transient unilateral throat and facial weakness Going on 14 years

Nice to see this site. My symptoms started 10/07. Had left facial palsy and weakness on left side of body. Ended in hospital with what was though to be stroke. Symptoms came and went numerous times during next week. Symptoms came and went over the years, sometimes debilitating. Along with above have ringing in ear with body weakness not so bad. Starting 6/8 years ago notice that I would get facial weakness while driving or laying down. Also would bring on facial problem within minutes of completing stress test. Had many scans of neck and brain, all negative. Sometimes facial weakness on left would get so bad that right side would start twitching. Saw many neurologist and ENT’s. Had cerebral ango in 2012 which was neg. Starting in January of this year throat felt as if something was stuck on left side and several months later the facial weakness episodes came more often-always laying down and when driving-other times for no reason. ENT did nerve test on left side of face and found I had a weakness 4 months ago. Many test done by ENT some of which made me sick and bought on facial weakness. ENT
came to point that it is a vascular problem with cranial nerves. Several months ago notice when turning head to left my left side of face weakness comes on hard all the time. ENT sent me back to neurologist and had another cerebral ango last week. Negative again. Have appt with ENT this week and will discuss ED. In addition to all above have started having pain in left back of head, left face and throat, ringing sometimes really bad. Left body weakness comes and goes.

Hi Jack & welcome to our forum!

I am sorry for what you’ve gone through for all these years. Your symptoms definitely sound like vascular ES, & w/ the facial paralysis, it sounds like your internal carotid artery on the left side is being compressed by your styloid &/or you have a calcified stylohyoid ligament on that side that is causing the trouble. You’ll need to request a CT scan w/ contrast to evaluate for ES & vascular compression (scan should cover the area between your skull base & hyoid bone). The vascular compression may not show up w/ your head in neutral position (face toward the ceiling) so ask your doctor to please request some images w/ your head turned to the left as that is what makes you most symptomatic. You cannot ask for this at the time of your CT as the radiology tech is constrained to follow doctors orders & if he hasn’t ordered it w/ your head turned, it’ll be a no go at your request.

When you have your appointment, it’s very important to ask these questions:
Are you familiar with Eagle Syndrome? If so, have you done ES surgery? If the answer is yes, go on to the bullet point questions below. If the answer is no, please ask for a referral to someone who is familiar with ES, or take a look at our doctors list & see if there’s someone on it who’s relatively close to you. If there isn’t anyone close by, and traveling is an option for you, we can make recommendations for the most experienced doctors who are closest you.

• How many ES surgeries has the doctor/surgeon done?
• Which surgical approach will be used i.e. intraoral or external?
• How much styloid will be removed (removal as close to the skull base as possible is the best answer) & will calcified stylohyoid &/or stylomandibular ligaments be taken out or left in place (yes is the best answer)?
• Does the surgeon do bilateral surgery (i.e. both sides at once) or unilateral surgery (each side requires a separate surgery bilateral cases). (Most docs don’t do bilateral surgery)
• Will a hospital stay be required or will surgery be done outpatient?
• In the doctor’s experience, what percent of symptoms relief has (s)he seen from surgery? (50-80% is the norm but some people get almost complete recovery)
• What is the expected recovery time? (Some doctors say two weeks. This is unreasonable. Two months up to a year for nerve recovery is more normal).

I hope this helps.

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How frustrating to have had all this testing done over the years & to have not had a diagnosis…Can’t really add any more to Isaiah’s info, she’s covered it all! But hope that you’re able to get a CT done & make some progress towards a diagnosis & treatment!

Thanks very much for the info. They did do cerebral angio with head turned in both directions during study. Do not know if he was looking at carotid at time or one of the other arteries at time. I also have mentioned ES to several Dr’s in email recently without comment. You are saying that you are agreeing with ENT that it is vascular? No possible way it could be just compression of several cranial nerves by styloid or its ligament? Really impressed with everyone’s knowledge!

If you’re not just having numbness/pain in your face but actual loss of facial muscle control then it is most likely vascular. If your “palsy” is twitching, numbness, tingling, burning, or other types of pain then it would be most likely based in the facial &/or trigeminal nerves.

The fact you had “stroke-like” symptoms (I assume this was one-sided eye lid droop (upper &/or lower lids), mouth droop, loss of ability to control facial expression on the left side) says vascular compression to me, & that type of symptom is related to the carotid artery being blocked or partially so. I hope this clarifies things for you. I’m not a doctor but do have some experience in this arena.

It’s not surprising ES was never mentioned in scan reports & that no doctors have commented about it after your inquiries. Most doctors aren’t familiar w/ ES. It’s often something they heard mentioned once in med school or saw a sentence about in a text book but were never educated about.

I was getting numbness & tingling in my face before my surgeries, which seemed to be getting worse, that’s resolved now. I had jugular compression not carotid compression, but never had muscle weakness/ palsy though. But my Trigeminal nerve was affected, not vascular I don’t think, just by irritation of the styloids.

Never had any eye problem expect in past several months with tearing. Also been waking up with dry mouth on left side for weeks now along with other symptoms.

Dry mouth & tearing eye(s) have all been noted w/ ES so you’re in good company here. The glossopharyngeal nerve is key in controlling salivation, & it’s one of the cranial nerves often irritated by ES. The facial nerve is another one often irritated by ES, & when it’s dysfunctional it can cause the extra eye tearing.

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