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Eagle Syndrome - Online Support Group

It's been a long road

#9

Isaiah, that is absolutely amazing you are 4.5 years out! We have learned way too much about all of the nerves, how they work, what they effect and where they are. That is so interesting about the accessory nerve, I hadn’t put that into consideration. We will for sure be researching that one if those pains continue. Upward and onward… always!

We are thinking both sides will have to be done. It is so nice to hear from so many people what we can expect with the side not operated on may start to flair. It is also nice to know that recovery can be a year. Great info going in so that we don’t feel like we are wasting time and at least our expectations are realistic.

We can take all of the prayers that come his way! Thank you SO much!

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#10

I will add…be sure you have a doctor that not only knows of Eagles Syndrome but has done many successful surgeries for it. The doctor that diagnosed me said he only did about 1 a year. I ended up finding Dr. Annino at Brigham and Women’s Hospital in Boston. He did my right side and will be doing my left side in August. External surgery and uses a drain to reduce swelling. There is great information on the National Institute of Health website. Best of luck to you both.
https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome

#11

Hi beane,

You may have noticed, if you’ve read a lot of posts, that a number of people have traveled out of their home states to see an ES surgeon w/ a lot of experience. We do suggest that a second opinion from one of the more experienced surgeons on the forum is a good idea (but not mandatory). You can get a second opinion appt by phone so you don’t have to travel. There is a charge for this but often health insurance will pay all or part of that cost. (The phone appt doesn’t obligate you to see that doctor later.)

#12

Hi All!
Well, my husband had his appointment yesterday and all went great! We wanted to go in and ask follow up questions about the surgery to make sure we were informed before we set up the surgery. Dr Ondrey has done many of these surgeries and has tons of ES patients. God must have heard all of our prayers because by a large miracle he will be going into surgery this Monday, May 13th!!! Wanted to let everyone know. We are both excited and so very nervous about surgery but we can only pray that at least some of his pain will be taken away from this. I can still pray and hope all of his pain will be taken away with this surgery but at least we are going in informed and armed with knowledge of what to expect. Plus, we both know that this is not a guarantee but we can always hope!

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#13

That’s great, very soon! Will be praying for your hubby, & hope all goes well!

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#14

Thank you SO much Jules!!! So scary and exciting all at the same time.

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#15

Hi beane,

God is in charge & has given you the gift of a good & knowledgeable surgeon close to home. I will be praying He will also guide Dr. Ondrey’s hands as he operates on Monday & for your husband to feel immediate relief. Some pain/symptoms can take a few months post op to subside so don’t be disappointed if it doesn’t all disappear w/ the styloid(s). If only one side is being done this time, the remaining side often causes symptoms to flare until it’s removed so don’t feel like the first surgery didn’t work if that happens.

:pray: :sunflower:

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#16

A little update for everyone!
My hubby went into surgery yesterday for the ‘extraction’ of his right styloid… The doctor was digging around in his mouth trying to feel the styloid process through the inside while he was under anesthesia and when he touched his right tonsil it erupted and oozed/shot out a bunch of cottage cheese like substance. His tonsil was over twice the size it was supposed to be and severely infected… We are guessing. They removed the tonsil and are going to dissect it and also send it into pathology to make sure it isn’t cancerous. His surgeon said that an enlarged tonsil can mimic the ES symptoms so we are going to let him heal up and see if the symptoms go away. If they do not we will set up surgery to be done externally in August. Super interesting though! No one caught the infected/enlarged tonsil and the surgeon said from looking at the outside of the tonsil it looked healthy. Wonder how long this has been infected and causing problems!? Also, could this have been so swollen that it was pushing on nerves so that is what was causing his head pain? We have lots of questions and only time will give us our answers.
I thought you guys would like an update.

#17

Wow - I truly hope this is it and it is done! You are both in my prayers:)

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#18

Yes, headache and pain just like that! Just to let you know, I had ES diagnosis and neurosurgeon was overruled so I am still searching for a diagnosis that pans out. Sometimes also feels like my head is heavy that my neck won’t hold it up and like a fist is squeezing inside my head then randomly hitting the inside of my skull.

#19

DeeG -
Your symptoms sound very suspiciously like vascular ES. Keep searching & asking questions. When you reach out to a more ES knowledgeable doctor, hopefully you’ll find an answer that helps justify your symptoms. I’m also interested in the results you get from your scheduled injection. Hoping for great results!

#20

Hi beane -

WOW! What a tale you have to tell! I, too, hope your husband’s symptoms all head for the hills & the thought of ES surgery will be history. I suspect at least some of his symptoms will be less severe than they were w/ that rotten tonsil in there!

You’re right - time will tell. Patience will be required. Having a tonsillectomy as an adult is a much bigger deal than when we’re children. I will be praying for your husband to heal quickly.

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#21

I will bring it up at next appointment. Doctor said something that went right over my head… The films show issues on left side, but all my pain is on right. Forgot about that until just now. I really appreciate you checking in. I’ve lived with this so long I go through the phases where I am actively researching then I just get in the “whatever” phase. I guess the “whatever” comes on when sleep is not going well. Thanks! Hope you are having a good day!

#22

Thank you all so much for the support and prayers!!!

@ DeeG - I completely understand the ‘whatever’ phase! We have visited that phase so many times!

#23

Deeg. Neurosurgeons are not the right doctors for ES. Find a head and neck surgeon that specializes in Skull Base surgery mostly for cancer patients. This is a very specialized field.
I have a neurosurgeon, wonderful doctor, never heard of Eagles syndrome, did not see it even though it extended very close to the spine. Reason. Eagles does not show up on MRI and neurosurgeons use MRI.
However, he was very interested when I brought him my surgical report after my external surgery and my 3D CT picture of the Eagles. He concluded that perhaps neurosurgeons could consider this before doing cervical surgeries. He was interested enough to spend a bit of time with me and asking for my surgical report.
Beane, I hope things improve from this point. At least, your doctor seems qualified. Would you please go to the doctors category and start a discussion with his name and then give us details. I believe he may be a great addition to our doctors list in the future. Your addition cod mean hope for others.

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#24

Hi Emma!
He is actually on the list already. He is Dr Ondrey at the U of M in Minnesota. He is very qualified and has been such a help! If you would still like me to go to that section I will but he is on the list. The doctor’s list is how we found someone near us to set up an appointment with. What a wonderful research tool!

#25

Emma did lots of the work on the list, we have her to thank for it, & Christian22 & heidemt.
Best wishes to your hubby, I hope that he heals quickly & that maybe this is the answer to his symptoms…

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#26

Hi DeeG,

Keep in mind that even though your left side may look more like ES due to styloid length or s-h ligament calcification or both, a shorter but thicker or more angled or twisted or very pointy styloid can still cause ES symptoms. Many doctors don’t take those things into account. They only look at styloid length or ligament calcification/lack of it. You should ask anyone who views your CT to look at the contour, angle, thickness, pointy-ness of your right styloid & not just the length. Also verify if you have any s-h ligament calcification on that side. Some doctors don’t take s-h ligament calcification into account either. Remember, too, that we are each uniquely designed so your cranial nerves & vascular tissues are likely differently positioned on the right than they are on the left thus any difference in the afore-mentioned physical features of the styloid or a calcified ligament could, therefore, affect those more profoundly on one side than the other.

#27

Hi DeeG,
I recently met with my surgeon who was the first one to tell me that my calcified ligament was thick and curved on one side and longer and pointy on the other. The thick one is the one causing most of the problems.

It makes sense that a surgeon who believes in ES and does many surgeries knows what they are looking at and can see the minor differences that a “regular” surgeon doesn’t see.

all the best to you.

#28

No need to post on the doctor discussion. I did not know he was on the list. I was too sick for about 2 years to track the list. Still only posting from my cell mostly when lying down.
Just thrilled that Eagles is getting some attention. I am noticing new websites with information on Eagles. Mayo clinic an a few others. Nothing as good as ours, but we are making headway and just in the last two or three years.

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