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Eagle Syndrome - Online Support Group

It's been a long road

#1

Hello to all of you lovely ES suffers!
First off, I am writing for my husband and I know I will totally forget to leave out something. The amount of doctors, tests, scans, injections and basically monkey business over the last 2 years has been insane! He isn’t a fan of social media or typically joining discussions but I have found this is really the only way to get good information as most doctors do not have all of the real world symptoms that you guys/us go through. With his excitement I found you guys through the occipital neuralgia group on Facebook. I’m just so happy to have found you!

So, here goes a little history on him:
This all started, we thought back in Feb 2017, when his head pain was so great that I brought him to the ER. Turns out, he has had crazy symptoms for years that we have never put 2 and 2 together as problems until his pain all came to a head one day. In the ER, they did CT scans of his brain, crazy pain medications that didn’t help and a spinal tap. Everything showed he was ok so he was admitted to the hospital for 5 days while they ran more tests. All types of head and neck MRI, MRA, MRB, CT and X-Rays were done and nothing was found. Basically everyone was clueless on what could be causing his ‘headache’. Which, btw, is not a headache or migraine. It’s more head pain. After the hospital we were seen by a neurologist that basically said, you’re healthy, I don’t know what’s wrong with you. So we set up appointments and were seen at the Mayo in Rochester. That neuorlogist listened to his symptoms for about a hot 30 seconds and said, you have occipital neuralgia. He then set my hubby up with nerve blocks and then a radio frequency ablation on the occipital nerve. Yep, that didn’t help at all! Then he wouldn’t see us again, said there is nothing more he could do. After the Mayo, we have been to 6 more neurologists, 2 different pain clinics (we have been through every nerve block that can be done in the head and neck plus trigger point injections as well), 2 neurosurgeons, chiropractor, physical therapy, shoulder surgeon (shoulder surgery was done to see if that helped), sedation dentist (4 crowns, all fillings were removed and replaced), acupuncturist, general, physical medicine (for botox injections), gastroenterology (did the fun throat tube/scope test) and 2 ENTs. All of these doctors to try and grasp at a straw to help him figure out where this pain in his head and neck was coming from!

This last ENT I was lead to because of your lovely doctor listing I found… Dr Ondrey at the U of M here in Minnesota. He ordered another CT and asked them to measure Joe’s styloid and behold… one side is at 38 mm and the other is at 37 mm. So he has ES. So now what…
The doc told us he would do surgery. We were stunned and unprepared at that appointment so we are going back on May 7th to ask the follow up questions and schedule the surgery. Why not, we’ve done everything else! He is also the only one we met with that actually knows what Eagles Syndrome is. That is crazy to me! We are really hopeful that this surgery will give Joe some type of relief. The more and more I read I think there is a high likelihood that ES might be causing all of his pain and problems.

To make my post longer here are some of his symptoms that he has been facing: hard time swallowing, choking feeling, now we add throwing up (like he coughs like he’s choking and ends up throwing up), head sensitivity (can’t handle wind which is the trigeminal nerve but we have been told it isn’t trigeminal neuralgia), pain on the right side of the face that starts on the upper neck traveling up the ear to the temporal area, top of the head pain and sensitivity, side pain that travels down and sometimes across the chest (we are thinking the vagas nerve is causing this), pain increases when he uses his right arm, pain also increases when he turns his head and also when he sits down. So many odd symptoms but in reading peoples posts most of these symptoms are listed.

I know we aren’t doctors but if any of you have head pain like this, could you let me know so I don’t think that we are on the complete wrong track with this? It just seems SO viable and with ruling so many other things out this is one thing that is actually making sense! Thank you so much for taking the time to read this extremely long post!!!

#2

I am so sorry for all you guys have dealt with. Your post reads like a medical horror story, like so many. All I can tell you is that I had lots of random odd pains too - and the first things I noticed after surgery (4 months ago - did external left side) was that the left side of my head didn’t hurt and my left jaw didn’t hurt. Lots of stuff still did and things do - but the left side head pain went away and I so badly want the right side to go away now!! Easier to deal with less pain - but odd to have half your head hurt. Best of luck - as I am sure you have read, getting a good diagnosis is more than 1/2 the battle!

#3

Thank you sjlash! I am so happy to hear your left side is somewhat under control after the surgery. That is awesome! Here’s hoping you can get the right side done.

His doctor said he would do the external and his would be on his right side. Then he would do the left side at a later date if needed. OH and he can’t handle vibrations either which makes me think that the styolid is hitting a nerve or something like that. He has a hard time in any vehicle that has vibrations. The oddities are just crazy!

I will have to tell you that I have everyone with this syndrome my full respect and you guys are amazing people for having to deal with chronic pain! Truly the strongest people I know. Watching what he goes through and how this had totally changed his life is terrible.

#4

Briefly, I had occipital neuralgia which turned out to be down do neck tension, I had exercises from a PT which really helped, haven’t had it for ages…I also have type 2 TN, constant aching on all 3 branches (& wind makes it worse, I have to wear a hat!), & I presume it is down to ES; it’s easier since surgery but not completely gone- medication helps luckily!
I feel for your hubby, & am so glad for him that you’re so supportive, great that you’ve worked this out together! I hope reading about what to expect from surgery & what to ask the surgeon helps you with your next appt. Best wishes!

#5

Wow sjlash, what an incredible story I am so sorry! The good news is you have ruled out so many really really bad things it could be (not that ES isn’t bad) and it sounds like your husband has the symptoms ES can present with, certainly long enough styloid to qualify! It is brutally exhausting to endure what you both have been through, one day at a time. Please let us know how your May 7th appointment turns out - sending lots of good your way!!

#6

Hi beane!

It has been a long road for the two of you. How tenacious of you to keep pressing on until you found a diagnosis that makes sense! I applaud your diligence! :clap:

I had head pain but not exactly like your husband’s. Mine was at the base of my skull on the back side in the area from which the styloids grow. I also had pain at the top of my head, jaw, behind my left eye, etc. Sometimes it was relentless & others, less so. It all left w/ my styloids. I’m now 4.5 years out from my first surgery & have had no recurrence of symptoms.

Your assessment of which cranial nerves are irritated seems pretty accurate. If your husband has shoulder/arm pain, then it’s possible the accessory nerve is also involved. The coughing/stomach issue could be vagus nerve as well as it can affect heart function, throat & gastrointestinal function & anxiety levels (that’s very summarized).

How great to hear about Dr. Ondrey & his willingness to help you! It is my opinion that your husband will see resolution of many of his symptoms if he has ES surgery. It will take time though. Often symptoms resolve gradually for up to a year post op. In bilateral cases, the symptoms caused by the remaining styloid often flare up as the first side is healing sometimes giving one the idea that the first surgery was unsuccessful. If significant symptoms remain or start up after the first surgery, there is a great likelihood a second surgery will be necessary.

I’m so glad you’re follow-up appt is coming soon. I’ll pray for you both to have wisdom as to how to proceed.

#7

Oh, bless you!!! Having all of those neuralgia’s plus ES… you are one strong person! One of his problems is he can’t even wear a hat because of the sensitivity to his head. I told him that he should start carrying an umbrella to block wind. He hasn’t started that yet because he said it would be a blow to his man hood. lol! I understand completely though! So we just plan around the weather. This site and everyone here has really helped up be armed with information. At least we will be armed with knowledge so we won’t be going into this blind!

#8

It is great news that we have ruled out so many things! Although, it doesn’t feel that way some days. But, we keep plugging along! I will update you guys about how his appt goes this coming Tuesday. Our hopes are high, which scares up because we have been let down so many times. Alas, we still hope! :slight_smile:

#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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