POTS/Dysautonomia and Eagles

[Karen]

Hi Everyone,

Thank you for allowing me to join this group, I’ve been reading posts and playing with the 3D modeling software and it’s been extremely helpful these past few weeks.

So I’m ready for my first post… and questions to follow at the end…

takes a deep breath

I had a CT scan looking for cause of pain at the back and sides of my neck and radiologist suggested Eagles Syndrome on his report which has lead me to search online and find this group.

I’ve had multiple neck and back injuries and “oddities” over the years. I have minor scoliosis, and a cervical rib that may or may not contribute to issues with hyper-mobile shoulders. I Landed on the back of my neck and “kissed my belly” when thrown off a horse at 15, was thrown from a horse twice more before I gave that up. At 24 years old I was rear ended by a truck when I was stuck in traffic, and at 30 (last year) I slipped on a step and caught myself with my right arm, jamming and partially dislocating it and kind of jarring my neck. Since then my neck pain has been increasingly intolerable and unrelenting to the point where I can’t stand.

Along the same timeline starting after the first time I was thrown from a horse, I had shingles twice, and a multitude of issues such as painful peripheral neuropathy in both hand and feet with loss of sensaton, extreme chronic fatigue, brain fog, GI issues, and “morning sickness” - ALL mostly resolved with a Celiac Diagnosis at 24 years old.

7 Years of eating strictly gluten free has put my celiac disease into controlled remission (as long as I adhere to a strict gluten free diet) Chronic fatigue has been lingering and worsened after I slipped on the stairs last year and dislocated my shoulder. I was diagnosed with Idiopathic Hypersomnia in the spring and put on stimulants to help keep me awake and alert during the day. Through all of this I was able to get a degree and start a career while raising two girls as a single mom for years on my own.

Lately my neck pain had been getting worse and I’ve been experiencing more brain fog which I just attributed to not stretching enough or getting enough “self care” during product launch season at work.

At the end of October I started feeling unwell and called in sick with dizyness, nausea, and my apple watch was warning me of a high heart rate of 168bpm, and this was happening only when standing. As soon After a month of testing my heart, bloodwork, electrolytes, adrenal function, autoimmune function all seems to be ok. We are looking at a POTS (postural orthostatic tachycardia syndrome) diagnosis but I keep thinking about Eagles Syndrome comment on my CT scan from earlier in October. I’ve been busy reading about dysautonomia and POTS on other support groups as well. I’m waiting for information that someone had mentioned from an ILC Conference in Toronto that took place this month where a Doctor had mentioned ES in one of his dysautonomia lectures. This fueled my fire to keep pursuing ES. I’ve been off work for 4 weeks now and I’m trying to methodically figure out a way these symptoms might be connected. The main problems being proximal atrial tachycardia when standing, and severe neck pain.

My thought process is that I may possibly have a vascular form of Eagles Syndrome.

Plan of attack at confirming / ruling out:

CT of C-spine w/o contrast 3D Model using the slicer - I became comfortable with the software and was able to pull some 3D models from my CT scans. All I can tell from my humble and Google fueled opinion is that I have styloid processes that go more downward than forward, and one looks like it may be broken (but also may be just the imaging)

MRI w/o contrast - Yep - I traveled to Michigan from Windsor, Ontario to get this done and paid a lot of money for it and they didn’t capture the styloid process because my family doctor wrote “cervical spine” and they literally captured ONLY C-spine and not a centimeter more - so no styloid processes. I’m in the process of asking for a retake to appease my doctor but I’m thinking its a waste of time?

CT Scan of C-Spine WITH CONTRAST - now booked at my local hospital for December 13th. Am I correct in saying this is the imaging required for a better look at Eagles?

Family doctor has names of Dr. Witterick otolarygologist head and neck surgeon at Mount Siani Hospital in Toronto that I pulled from this forum. We are waiting for CT w/ contrast and radiologist report to send referral. Is this the doctor in Ontario that I should be asking for?

If you’ve read this far, I appreciate you staying with me here… any thoughts, comments or opinions are welcome… I’m also just trying to get confirmation that I’m possibly on to something. So if you think this is kind of “off base” I’d like to hear it too

Heres my CT after 3D rendering using the slicer tutorial with front of jaw cutaway for better view

[Isaiah_40_31]

Hi Karen!

Welcome to this awesome forum! I’m glad you found us. I must say I’m quite impressed. You’ve done your homework well & are totally “on base”. You have certainly had some major injuries to your neck & spine that could contribute to your ending up with ES, and your suspicion of possible vascular ES definitely aligns w/ your POTS type symptoms, chronic fatigue, brain fog & tachycardia. These can all result from (a) compressed internal carotid artery(ies) or jugular vein(s) which are the vascular tissues most commonly affected by ES.

A CT scan without contrast is the best diagnostic tool for showing the styloid processes & the stylohyoid ligaments (if they are calcified). When contrast is added, the vascular tissues can be seen & vascular compression can be diagnosed. You’ll need to have the scan w/ your head in a provocative position i.e. the position that best promotes the vascular symptoms you’re experiencing. If your head is kept in a neutral position (unless that is the provocative position), it’s unlikely vascular compression will be seen, & you’ll get another “worthless” scan like the unfortunate MRI.

You did a great job with the 3D slicer program. I agree that your styloids look to be growing in a more straight down direction. Your left one in particular looks pretty long. The right one also looks problematic. Whether it is broken, or the styloid is a normal length & the stylohyoid ligament is partially calcified will need to be determined by the radiologist who interprets your upcoming CT scan. FYI the definition of Eagle Syndrome is a) elongation of the styloid process(es) OR b) calcification of the stylohyoid ligament(s) OR c) a combo of a & b.

Unfortunately, there is a note in Dr. Monteiro’s information on our most current ES Doctors list that says Dr. Witterick is no longer doing ES surgery, however, there are several doctors listed in Ontario. Your best bet is to use the magnifying glass search tool above & type in each doctor’s name to see what has been posted about our forum members’ experiences with them. There may not be posts for every doctor. I am including the link for the most current doctors’ list here: Doctors Familiar With ES Countries Outside US

I believe you are on the right path to finding a solution for the things that are currently bothering you the most. It’s truly amazing how one or two little bones in the neck can cause so much trouble. They tend to tangle w/ cranial nerves that run through that area of the neck & create crazy symptoms that often don’t lead anywhere but to a diagnosis of hypochondria.

I hope all this information is helpful to you. Please keep asking questions. We’re here to answer them!

[Jules]

Very impressive doing all this research yourself, & managing all these health problems with being a single working mum!
We’ve had several members with Pots & dysautonomia, but don’t know how surgery has affected them/ helped that I can think of.
I agree with Isaiah- don’t waste any more time& money with MRIs, but a CT with contrast can help. And agree the SPs look long, possibly broken one side unless it’s a section of calcified ligament.
Dr Witterick was the best hope for members with ES in Canada, but unfortunately he’s concentrating on cancer surgery. Some members have considered travelling to the US & funding surgery themselves. In addition to the list Isaiah posted the link to, member onelessstyloid has helpfully looked up some research papers on ES, & found Dr A Alkakkan, a Neuro at the Uni of Toronto was author of a paper about Vascular ES, & Dr Tarek Ayad, an Otolaryngologist at the Uni of Montreal was a co-author on another ES paper. It does seem to be a struggle for Canadian members! Hope that you are able to get to see someone!