My Story - crazy symptoms ..questions

Hi All,

I have little to no support at home or with Docs so far so I was thrilled to find this support group.

A little background:

51 yr old male, fair skinned, thin, played a lot of sports / former distance runner, etc. Have bad cervical disks C5/6 and C6/7.

History of allergies although not much in recent years. Have had sinus problems lately but don't think it is a cause of my condition.

Have history of neck problems primarily on left side.

Onset:

Had severe bruxism on left side day and night starting around April last year ...noticed some tongue thrusting and jaws were so tight I strained to speak sometimes.

In early October had incident were I tried to lift a heavy trailer while clenching down on my teeth / left side. This caused a lot of pain on the left side of neck., headache, etc.

The next day I started having heavy muscle spasms in the neck along the left sterno / carotid area and elsewhere along with spasms and nerve pain in my face / eye/ ear 90% on the left side.

Give my history with my c-spine, I didn't take immediate action and continued on my heavy travel , etc schedule.

A week or so later, my neck locked up - mostly on the left side - during a long drive back to Atlanta - and all the spasms were worse.

That night I had a sudden onset of throat and jaw spasms, - seemed like contractions / convulsions along with very heavy saliva output.

Saw GP - who I've been with for many years and trust..she thought anxiety and put me on Klonopin and Lexapro . I went through 3 months of pure hell with the Klonopin before withdrawing totally. The first few weeks I was over swallowing, dry swallows, having a lot of trouble trying to manage the saliva, pain etc swallowing food etc.

Thought TMJ and GERD - had / have some of those symptoms but realized through clean GI Endoscopy, and ENT scope etc etc that these couldn't be causing it.

List of Primary Symptoms:

Constant pain in and around left ear, periodic muscle spasms around ear.

Numbness, stabbing pain in left side of jaw, under back of left jaw / under ear.

Swallowing is painful - have feeling of rubbery bone moving in and out on left side during swallow.

Tongue is hypersensitive, dry , in a lot of pain particularly after eating a big meal or talking a lot.

I feel like I have to clear throat and/or swallow constantly - feel like I have a lump in throat.

I feel a sharp stick in my throat on the left side - more prominent if I lean or look left or look down and left. Have self palpated it and get pain etc on left side of face and around the eye, etc.

Left eye is always bloodshot and it is teary sometimes.

Periodic jaw and throat spasms - seem to be triggered by movement of the head or neck particularly to the left, or saliva in the back of mouth. or talking while I have saliva in the mouth.Ear / Jaw on left side seemed to be involved and seem to trigger spasms sometimes...I'll get a short electric buzz feeling under / in the left ear/jaw and simultaneous jaw and/or throat spasm. If I lie on my left side I'll likely have a spasm whereas lying on the right side I don't or not nearly as much.

Hyper salivation - it has become a shade better over the last couple of days but it is hard to manage . I swallow it which hurts sometimes or spit.

This condition is debilitating and I'm determined to find the right surgeon or clinic asap to try to help me. .

Questions:

I'm seeing an oral surgeon on Thursday and an ENT - Del Gaudio at Emory here in Atlanta next Wednesday.. Anybody have any experience with him?

Does anybody have any other Docs in ATL or anywhere that handle ES?

How about the major clinics like Mayo or Cleveland?

Any other suggestions?

Thanks !

Eddie

Eddie
Your symptoms certainly could be related to Eagles. I have read posts about Dr. Del Gaudio on this site so I imagine you will get some responses about him. Hang in there, it sounds like you are on the right track!

I am unfamiliar with Atlanta....but there is a list on this site of doctors that were given thumbs up by actual ES patients. I am from Michigan and am going to Chicago for help. There is a very popular doctor that I learned from this site who resides in Columbus, Ohio. His name is Arick Forrest and had done a lot of ES surgeries. The University of Michigan is where everyone in Michigan goes when they have something requiring more expertise. Yet they had no one to treat Eagles Syndrome! The key is finding an ENT who is familiar with ES before you even bother going........many never have come across it in their career.

Sounds to me like you have a lot of Eagles symptoms!! Good luck in your search

Thank you JKL :)

JKL said:

Eddie
Your symptoms certainly could be related to Eagles. I have read posts about Dr. Del Gaudio on this site so I imagine you will get some responses about him. Hang in there, it sounds like you are on the right track!

Ivy, Dr Forrest is now on my list. Thank you so much ! Eddie

Ivy said:

I am unfamiliar with Atlanta....but there is a list on this site of doctors that were given thumbs up by actual ES patients. I am from Michigan and am going to Chicago for help. There is a very popular doctor that I learned from this site who resides in Columbus, Ohio. His name is Arick Forrest and had done a lot of ES surgeries. The University of Michigan is where everyone in Michigan goes when they have something requiring more expertise. Yet they had no one to treat Eagles Syndrome! The key is finding an ENT who is familiar with ES before you even bother going........many never have come across it in their career.

Sounds to me like you have a lot of Eagles symptoms!! Good luck in your search

Hi Eddie,

Here's the link to the doctor list from this site:

Eagles Syndrome Doctors.xls

Hope you find this helpful!

Awesome - thanks !

Isaiah 40:31 said:

Hi Eddie,

Here's the link to the doctor list from this site:

Eagles Syndrome Doctors.xls

Hope you find this helpful!

Eddie, if you type that doctor’s name into the search box on the Discussion page his name has come up in many earlier conversations.
Good luck



eddieh said:

Ivy, Dr Forrest is now on my list. Thank you so much ! Eddie

Ivy said:

I am unfamiliar with Atlanta....but there is a list on this site of doctors that were given thumbs up by actual ES patients. I am from Michigan and am going to Chicago for help. There is a very popular doctor that I learned from this site who resides in Columbus, Ohio. His name is Arick Forrest and had done a lot of ES surgeries. The University of Michigan is where everyone in Michigan goes when they have something requiring more expertise. Yet they had no one to treat Eagles Syndrome! The key is finding an ENT who is familiar with ES before you even bother going........many never have come across it in their career.

Sounds to me like you have a lot of Eagles symptoms!! Good luck in your search

Hi Eddie! Since you're having foreign body sensation and pain upon palpitation, it's likely you'll get immediate answers from electronic imaging. And you know about ES. You're not alone!

Hi, all I can say is yes to what you have written, Mine is on the right side. I had some surgically removed in 2001. I now have calcified ligaments and will hope to get some relief with neurology. I am going to try gabapentin. helps with nerves. also some antiflamatories. Then surgery again. My doc is at Duke and will be going for some surgery herself so it wont be until the summer, but I cant wait. Just keep tuned in on this site. It is a relief to find people who expereince this and I am not crazy.....neither are you.

Thank you !



Nel said:

Eddie, if you type that doctor's name into the search box on the Discussion page his name has come up in many earlier conversations.
Good luck


Thank you!
minnesota said:

Hi Eddie! Since you're having foreign body sensation and pain upon palpitation, it's likely you'll get immediate answers from electronic imaging. And you know about ES. You're not alone!

Yellow Moon, Thank you so much for your response - it really helps to know that we are NOT alone!

yellowmoon said:

Hi, all I can say is yes to what you have written, Mine is on the right side. I had some surgically removed in 2001. I now have calcified ligaments and will hope to get some relief with neurology. I am going to try gabapentin. helps with nerves. also some antiflamatories. Then surgery again. My doc is at Duke and will be going for some surgery herself so it wont be until the summer, but I cant wait. Just keep tuned in on this site. It is a relief to find people who expereince this and I am not crazy.....neither are you.

Eddy, someone just posted a doctor at Emery University in Atlanta named Dr Charles Moore. Said he was good. He has done the surgery

Thanks Ivy ! I'm seeing Dr Del Gaudio next week at Emory. I think Moore either retired or stopped working with Eagle's patients. Thanks again ! Eddie

Ivy said:

Eddy, someone just posted a doctor at Emery University in Atlanta named Dr Charles Moore. Said he was good. He has done the surgery

Drs. Rishi Gupta- vascular neuro and Michael Vick ENT both with Wellstar. I went to Emory and it was a dead end. I'm having surgery Monday at Kennestone.

My doctor with Dr. Richard Gillespie @ Cornerstone Ear Nose and Throat is located in Monroe NC. We are approx 3 hours from Atlanta. I could not have asked for a better doctor and/or recovery.

@eddieh hi I know the is a very old post but having similar symptoms and also on klonopin . would you mind elaborating " I went through 3 months of pure hell with the Klonopin before withdrawing totally. The first few weeks I was over swallowing, dry swallows, having a lot of trouble trying to manage the saliva, pain etc swallowing food etc." You think those were caused by the klonopin?I was also prescribed lexapro and couldn’t handle it . thank you and hope you might read this message .all my best

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