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Eagle Syndrome - Online Support Group

New user with questions

#1

Hi All I am new to the group and undiagnosed at this point - but going to finally see a head and neck surgeon in Boston in a little over 2 weeks. It has been a rough road the last several months (though not as hard as some folks on here!). I have been experiencing all of the strange symptoms and I have been to 2 different ENTs with bad diagnoses or no diagnoses for my issues.

My first ENT took about 5 mins to say I had TMJ and referred me back to my dentist which quickly became clear that wasn’t the issue. I pushed to have a second opinion because I was getting more worried and got into another ENT that finally ordered CT Scans and fortunately confirmed that I don’t have any issues in my throat and glands, but basically said come back in 3-6 months if the pain is still there. Not only is it still there it has gotten worse and now I finally have an appointment with the head specialist at Beth Israel in Boston - Dr. Jalisi. Does anyone have any information on Dr. Jalisi? I have seen that he has been noted on several papers related to ES but I don’t see any mention of him on the site. I am finally hopeful to meet with him this month since I feel like things are getting worse.

Just some notes on my symptoms:

  • lump or something in my throat when I swallow
  • consistent sore throats for many years now
  • I have neck pain on both side but much worse on my left side
  • consistent pain near the end of my hyoid bone on the left side - also feel it on right side but much less frequent and painful
  • increasing pain under my ear around the sternomastoid
  • hearing loss in my left ear over the last few weeks
  • numbness in my extremities - especially left leg and foot and left hand over the last several weeks
  • headaches and pain in back of left neck behind the ear
  • also had periods of glandular pain and dry mouth

Has anyone else experienced some of these - especially the numbness and tingling in feet and hands? That one is particularly concerning and scary since I have never had these issues.

Thanks and happy to join this group - I will have lots of questions and hope to pass along what I learn!

#2

Hi, & welcome!
Not had the problems with hands & feet, do have Raynauds, as have some other members, don’t think it’s related to ES though. But that said ES does cause some wacky symptoms!
The other symptoms sound typical of ES…
Did you get the results from the CT, or are you able to get hold of a copy? There’s links to software on here that members have used to look at their CTs in 3d, very cool. And you could have a look yourself to see if the styloids look elongated or if the ligaments are calcified. Will Dr Jalisi be sent your ENT’s CT results; that will save you time?
We’ve not heard of the doctor, but that’s not to say he’s not experienced- at least he’s knowledgeable if he’s published research papers, & head/neck surgeons are a good bet.
If it does look like you have ES, there’s info about what to ask Dr Jalisi, but briefly you could see if he takes the styloid processes back to skull base, & if not does he smooth the ends. If the ligaments are calcified will he remove them too? I presume he does external surgery being a head & neck surgeon. And obviously how many surgeries he’s done!
Some members have found that it scares doctors off if you mention weird or wacky symptoms, so it might be best to stick to the usual ones if you discuss this during your appt.
Will be very interested to hear how you get on, it would be good to find another doctor for our list!

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#3

Hi EaglesinBoston,

Glad to hear you have an appointment with a head and neck surgeon soon as your symptom list falls into the ES bag! Your numbness in the left hand and foot etc are a bit trickier though, neurological symptoms can be hard to figure out. Innervation of your foot is from your lower lumbar spine and the hand is from your lower cervical spine so not likely the ES. Medication reactions and side effects could be part of the problem if you are on anything out of the ordinary but that would not likely be one sided. The good news is a head and neck surgeon would be able to screen this for you and make the appropriate referral to a neurologist if he thinks it is not related to elongated styloids. Wishing you the best on this journey, just have to hold on for the ride. Know you are not alone!!! Let us know what you find out please :purple_heart: nicole

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#4

Thanks so much for the replies… very helpful advice as I prepare for the appointment with Dr.

To your question, I have not seen the CT scan and I will be asking for it and to make sure Dr Jalisi has access to it for the appt. I am very interested to see and hear about the Styloid processes and the ligaments. I am nervous about potentially needing surgery but the thought of feeling better at some point after this nightmare gives me some hope. I will share everything I learn and let you know what I find out given the drs experience. I have heard fantastic things about him and was actually surprised I was able to get in to see him.

Thanks also regarding the numbness… I was hoping it might be related to something else and glad to know it’s not something related to the ES.

Thanks again for all the info and kind words. This has been a rough journey that I wouldn’t wish on anyone but hearing all the experience and advice is so reassuring!

EIB

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#5

Hi EIB -

Actually, there have been a couple of people on the forum who’ve had numbness in their arm(s) & shoulder pain that seemed to be related to an irritated accessory nerve caused by an elongated styloid process. These people had resolution of the arm & shoulder issues post op but it did take some time for the nerve(s) to recover. Since we’re all “built” a little differently, we do experience different types of ES symptoms beyond the normal ones.

I can’t speak to the leg/foot issue for sure, but time will tell if it’s somehow related to ES. We can get crazy nerve referral symptoms from places in our bodies that are far from the source of the problem.

#6

Yes EIB, I have every symptom you named. Leg/foot was resolved with cortisone injection properly placed in lower spine. All the pain is now at my shoulder and up with numbness in pinkie and ring finger right side only. Feeling for you and sending out my good thoughts for a successful appointment! I am grateful someone suggested this site with great discussions and questions to pose to doctors.

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#7

EIB, have you done any x-ray at all on your neck or brain you could post on here? That may help others pick up things for you & I posted all I had then of a dental panoramic

image things were seen pointing to (ES)…Do you have access in Boston to a good dentist with Panoramic x-ray? Hope you get answers soon God bless you

#8

Thanks everyone for the well wishes. I am hopeful for once after a long time of complete uncertainty and anxiety. Especially knowing so many of you have successfully made the journey and found some relief.

Aiden I have only had the one CT scan with contrast done of my mouth and neck 2 months back and I have not seen the results. I did have an oral surgeon do xrays on my teeth and few months back as well as they originally suspected an impacted molar with the jaw pain. I have not seen that X-ray and I do not believe it was a panoramic X-ray. I will try and get a copy of the CT scan to share so I can have some folks here look for signs that could help. Hoping they show something that the ENT just didn’t know to consider or look for.

Thanks again!!
EiB

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#9

ok thanks EIB, I doubt the Ortho Doc used a Panoramic usually Dentists have these, if you cannot get your CT or other Scans I went directly to my Dentist requested a Panoramic & asked them to give me a copy by email then I uploaded it on here & it

does not cost much to get one either. My dentist office did mine for free & I uploaded it here on the Group page. I am still trying to get someone to do the proper images but have not had success yet…I wish you answers soon I know it can be frustrating not knowing…

#10

Thanks Aidan - great advice. I have a dentist appt tomorrow and I will inquire about the pano X-ray and try and get one and get copies so I can share them.

Thanks again!
EiB

#11

Hello, I got a pano, but it did not show what dentist needed to see, but, as of today, I do have my VA records in hand and tests on CD.

#12

That’s a great start, DeeG! You’re moving forward step by step!

#13

Unfortunately my dentist was not helpful. He had heard of eagles but wasn’t convinced and was not helpful in recommending somewhere to have the pano X-rays done or referred for me. It’s frustrating to see so many professional without any knowledge of this issue.

Oh well, I have asked for copies of my CT scan be sent to me and dr Jalisi for my appointment in a few weeks. Just hoping there is enough there for him to evaluate the pain and symptoms. Concerned I will need to wait for a batch of more tests before we can get anywhere. Just hoping for some resolution and plan soon.

Best of luck to those healing or having surgery soon!

EiB

#14

That’s a shame, but good that at least you have an appt. with Dr Jalisi coming up, keep strong …

#15

I don’t understand doctors who aren’t willing to help a patient however (s)he is capable of helping in a situation like yours. SERIOUSLY! It’s just a matter of giving a referral.

I also hope Dr. Jalisi is able to help you & is willing to refer you for another scan, or whatever is needed if the one you have isn’t “good enough” so he can better evaluate your situation.

Keep on keeping on! You’ll find the answers you need! We’re always here for you!

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#16

Thanks all… still frustrated but hopeful for appt in a few weeks. Very concerned about symptoms that have gotten worse over the last month but just trying to get to a doctor that understands the problem and can figure out what is wrong and hopefully have a plan to deal with it. Appreciate all the support and help. I will continue to try and get copies of my results and share them to get the groups knowledge and input.

Thanks!
EiB

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#17

Do you have pain when brushing back teeth. I hit my jaw inside with toothbrush and the entire right side hurt for an hour.

#18

That sounds horrible Dee. I don’t have pain inside my mouth other than sore throats. The pains I get are specific spots on the underside of my jaw… sharp nerve pains that will sometimes radiate up to my teeth but it’s not tooth pain.

#19

DeeG

I had pain/pressure under the back of my tongue on the left side. On the right, the roof of my mouth & along my upper gum line would spontaneously feel like I’d just poured scalding water on them. The feeling would last an hour or so then gradually go away. It was very weird. Totally stopped after ES surgery.

#20

Hi All,

I had my initial meeting with Dr Jalisi this week and unfortunately we didn’t get very far. My doctor did not forward the CT scans as I had instructed them to do twice so he was unable to evaluate much. He did indicate that he has performed many ES surgeries and published several articles on ES so he was very familiar with it but he ordered his own CT scans next week and I am going back to him in mid June for him to evaluate the bones and ligaments. He also requested that I see a neurologist about the neck pain, headaches and issues with the hands and feet. Very frustrated but I have some confidence that I will get an evaluation from him in a few weeks.

Looks like I need to wait even longer. I have had some further thoughts about my symptoms and other related things but I will start a different thread for that.

Thanks all and hope everyone is getting answers or recovering well!

EiB