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Eagle Syndrome and Dysautonomia - Questions

Just wondering if anyone has had symptoms of dysautonomia because of Eagle Syndrome or have both Eagle syndrome and dysautonomia.
[Dysautonomia or autonomic dysfunction is a condition in which the autonomic nervous system (ANS) does not work properly. This may affect the functioning of the heart, bladder, intestines, sweat glands, pupils, and blood vessels.]
For me, 5-10 times a day, I experience “clicking” in the left side of my neck with random neck movements. I describe it like cracking your knuckles but with pain that goes away immediately. On occasion, I have fainted or near fainted with these random neck movements. Lots of different tests and I was diagnosed with vasovagal syncope (dysautonomia) by doing a tilt table test. I was diagnosed with Eagle Syndrome by my ENT who said that my left styloid is 4.5 cm and right styloid is 4.2 cm (this is based on a CT from 2 years ago).
The only trigger I have for the dysautonomia / vasovagal syncope (fainting) is the clicking in my neck. People can have so many triggers - heat, crowds, blood or medical procedures, etc. But, for me, it is the clicking. Therefore, my theory is that the styloid process (or ligaments) is compressing something, and either the compression or severe pain that accompanies it is causing me to faint/ almost faint.
The symptoms I have of dysautonomia are: nausea, fainting/ near fainting, fatigue ++, and a falling back sensation (like doing the wave at a baseball game, over and over).
Do you have symptoms of dysautonomia? Which ones?
If anyone has had symptoms of dysautonomia, were they lessened with surgery for Eagle Syndrome?
Thanks in advance.

If you search for dysautonomia in the discussions, using the magnifying glass icon you’ll find a few discussions from other members; there’s some good info in them from members far more knowledgeable than me! Here’s a link to one, but there are more:


Hope this helps!

Hi sunflower!

We have had a number of members diagnosed w/ dysautonomia & at least some of those has seen symptoms reduction after ES surgery. Several of the problems you listed as being associated w/ dysautonomia are controlled by the vagus nerve - heart, bladder, intestines, sweat glands & maybe blood vessels as it controls blood pressure. The vagus nerve is one of the cranial nerves most often irritated by ES thus having the styloids/calcified stylohyoid ligaments removed would enable the vagus nerve to heal which in turn should help reduce your symptoms.

The clicking in your neck sounds like the symptom that has been mentioned by several of our members who had calcified stylohyoid ligaments. It would be good for you to get a new CT scan w/ the goal of looking at your styloids AND your stylohyoid ligaments. Having the styloids removed but leaving calcified ligaments behind will not help you much. Both need to be taken out.

There are now several doctors on our list from your province. We have two members - Weezie65 & BFresh who had their surgeries done by Dr. Dan O’Connell ([https://headandneckclinic.ca/page.php?id=1#4]) a couple of months ago & though still healing, both are feeling much better.

I have dysautonomia in addition to ES as well as EDS and they are all players together. It doesn’t get rid of it completely, but improves some things for sure and there is a connection. especially if there is compression of the jugulars or carotids, glossopharyngeal and vagus nerves

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Thank you!

Thanks. The CT scan showed compression of jugular vein.

I checked and Dr. O’Connell is from Alberta, a different province from where I live. In March, I did see some doctors who seemed to know what they are talking about. However, everything has been on hold due to COVID-19. Just waiting for appointments to resume (fingers crossed).

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My mistake, sunflower. I thought he was in Ontario. I just put more info about him on the Doctors’ List. Won’t make that mistake again!

Glad you have some leads more local to you.

No problem. Thanks!

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HI Sunflower,
My daughter has dysautonomia and eds and was full evaluated at Vanderbilt. She was diagnosed with vasovagal syncope at young age then later dysautonomia. Although I dont have full blown dysautonomia, I experience mild light-headiness and other symptoms. Now that I have my left styloid out, I am getting the clicking or cracking when I rotate my head on the right. Doc wanted to take out right first but my left was so painful he said ok on the left first. He says the right is longer also. It doesnt hurt but it doesn’t sound right. Your description of knuckles cracking is a perfect description.I wonder if the calcification is cracked or segmented and possibly broken from rotation? My initial severe pain started on the right but shifted to the left. I have no explanation why it shifted.
I’m curious, when they did the tilt table test, did the determine you had dysautonomia was present only with positional or head rotation? If not, then I would assume you have two things going on at once and the compression worsens the dysautonomia symptoms. I also wouldn’t think that just compression of jugular would cause full blown dysautonomia. It is strange you dont have the other dysautonomia symptoms.
Usually the fainting with this is caused by the blood pooling in the legs and the hearts inability to pump the blood to the heart fast enough upon standing thus causing dizziness or pass out events, Orthostatic intolerance is “inability to remain upright” when having these symptoms. If you had the tilt table test, I would assume they did other testing that confirmed the dysautonomia diagnosis. I would look closely at all the other testing results that were done at the time of the tilt table test.
Like many of us, we have such a wide variety of symptoms, that we often don’t know until after surgery what will improve or go away. If you know you have compression, I would safely assume, a decompression will be of value and surgery will give you some positive results.

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Thanks, Snapple. In the last line, you say “a decompression will be of value.” Are you referring to surgery or another procedure?

more info - During my tilt table test (TTT), i did not get the neck clicking. After 10 minutes, both my blood pressure and heart rate went down. (Because both blood pressure and heart rate went down, i figure it is not POTS.) The staff put me in a laying down position before I fainted completed. It is so curious because, other than the TTT i have only had fainting / near fainting episodes with the neck clicking.
The dysautonomia symptoms of nausea, fatigue, and falling back sensation, along with low blood pressure, only happened when the clicking in my neck started.
After my tilt table test, I asked to see a dysautonomia specialist but my cardiologist said that he is the right person and no need to see anyone else. He really has been trying to figure things out. I had no other testing relating to dysautonomia. i did spend a week in hospital in a seizure unit because, with some of my fainting episodes, i had head tremors (when i was unconscious). I did have an episode of clicking in hospital where i almost fainted. It was determined that I do not have ‘seizures.’
Thank you.

Hi Sunflower,
Decompression was referring to surgery. IE: jugular compression.

Personally, I would see a neurologist who has a specialty in dysautonomia or seek out an autonomic disorder clinic.Usually there are some teaching hospitals where they do all these advanced testing that can confirm the diagnosis. I would not take the cardiologist opinion in full and do a strong push back on that. A cardiologist is not a dysautonomia expert and limited use in caring for a patient who has it. In fact, it really is not in their wheelhouse at all. It is not a heart issue.
Im curious where you had the tilt table test. Was it at the cardiologist’s clinic?
We (My daughter and I) volunteered for a 10 day inpatient study at Vanderbilt in Nashville where they did a battery of tests that confirmed the dysautonomia diagnosis. They actually induced a fainted spell and even the nurses thought it looked liked a seizure. They later determined it was not. It sure looked like a seizure to me. One of her current docs is a neurologist who runs a dysautonomia clinic and has a background in epilepsy.

We also flew back to Boston Children’s hospital and got another evaluation (Im on west coast) and there is a New York Clinic who is doing studies where you can get advanced care for essentially free if you sign up for a study. Some even pay you a daily rate. Both seem to get good reviews from other patients.
This is a tough one. You know your body better than anyone and if this happens during rotation and you know you have a jugular compression, I got to wonder then if the Eagles surgery might take care of it. I really wonder about the dysautonomia diagnosis. I am assuming after a week in hospital, they never determined the cause of the tremors? That would be a little unsettling after all that. Keep pushing to get more answers.
This doc below works alot with Vanderbilt with their studies (we met him) and is a super sharp guy. I was impressed and I dont say that about many docs. He is listed on many studies and knows this well. He has an office in Alberta. I’d recommend him in a heartbeat. I put him up there with top 10 docs in the world on dysautonomia.

Doctor

Dr. Satish R. Raj
Canada
Libin Cardiovascular Institute University of Calgary 3280 Hospital Drive NW? Calgary, AB http://libin.ucalgary.ca/
Calgary Alberta Canada
Phone: 403-210- 6152

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Hi Snapple 2020, Thanks for your reply.
My TTT was done in a hospital. The cardiologist was present to do a carotid massage (My understanding is that normally he wouldn’t be there). Nothing happened during the carotid massage portion.
For the tremors, nothing really happened and they weren’t explained.
It was one of the doctors overseeing the seizure clinic who finally seemed to listen to me (about the clicking in my neck) and queried Eagle syndrome. He ordered a CT scan on the day i was discharged from hospital. Even with that, though, there wasn’t a diagnosis until much later (about 2 years), after seeing multiple ENTs with some doctors not knowing about Eagle’s, thinking Eagle’s does not exist or is controversial. Especially, with my symptoms, which doesn’t fit into the ‘classical’ type of ES.
It’s tough, because with so many doctors, there hasn’t really been one doctor overseeing it saying You have dysautonomia or You have Eagle’s Syndrome and here’s what we can try.
At first, it was a back and forth between neurologists and a cardiologist. The neurologist saying, I’m not sure, go see the cardiologist, and then the cardiologist saying the same thing, go see the neurologist.
So, I’ve had to advocate for myself (and I’ve been so fortunate for my mom’s support). Been a journey! And with COVID-19 thrown in, it has delayed things. But the journey continues. :slight_smile: Have a great day!

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Hi Sunflower,
I guess we are all familiar with the merry go-rounds with different docs. It took me 5 years to get my ES diagnosis and I only got there armed with information from here and the the fate of meeting a neurologist that had just enough knowledge of ES to suggest it. Once I learned about Eagles, I began my research and I was off and running. My PCP reluctantly ordered the CT Scan and chalked it up to TMJ. I proved him wrong. It took me 7 years and multiple docs to get my daughter diagnosed with POTS. It was a chance encounter with a new pediatrician whom was familiar with it and referred us to those docs with a specialty in it. Getting to the right docs is critical.
This can happen when you have docs that little experience with these medical conditions. Going from doctor to doctor who just have no knowledge about this. I think if you get yourself to (2) doctors who are considered experts in Eagles (ENT) and Dysautonomia (Neurologist) which will be both separate specialties, you might get to the bottom of what is going on and get the right help to solve and manage it better. As you already know, we don’t get there without advocating for ourselves. Did you get a copy of your CT scan on disk as well as the radiology report? Also all the records from TTT and other testing? I gather all my medical records as I go along and study them but then again I like to do research. I guess I have learned to, given dealing with inexperienced docs. Good luck on your journey and my motto is “never give up”.

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