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