Hello everyone and thanks for the warm welcomes and advice I’ve received from mods even before my first post.
The lead up to my severe symptoms has been a long road and I couldn’t quote the amount of time, truly. But I have been voicing concerns involving turning my head combined with talking and/or eating with feeling of presyncope to PCP’s and a cardiologist for 5 years or so. I did end up positive testing for POTS with the casual non-tilt table test and being prescribed midodrine. A neck area ultrasound of vessels did not uncover any related issues several years ago.
In the mean time, I have learned to minimize or stop bending down and forward and have had to modify many job and house work activities to avoid the fainting sensations.
During a Covid furlough period this past January, I was feeling strong and tired of feeling useless around the house to myself living alone. I decided to plug in the chainsaw and make a pile of smaller tree branches. I believe the repetitve bending forward of cleaning up that pile triggered the tachycardia in response to low blood pressure and led to severe symptoms for hours after the activity. I ended up calling 911 and the mobile EKG failed to find an issue. With Covid as strong as it was in Southern Calif. at the time, I declined a trip to the ER.
A few days later I had sudden pain and tightness seeming to come from behind my jaw and ear fullness all on my left side. These sensations soon spread to my neck along the left side. I certainly had and still have a globus sensation. These symtoms have led me to two Nuerologists, three ENT’s, an endocrinologist, an orthopedic surgeon/pain management doc and a couple PCP’s. MRI’s and another ultrasound, this time of the thyroid due to the second ENT feeling what he thought felt like a fluid filled nodule on the left side. Neither test uncovered anything of interest at the time. I’ll add that in the weeks after the 911 call I had a very rough time of being unable to sleep for days, having mini jolts/seizure like jerks while in bed trying to sleep. It took a great deal of self-convincing to brave the covid filled ER’s, but I did with my N95 masks on three times with the effect of being told my symptoms were due to anxiety. During this time I could not predict the terrible flare-ups and became unreliable at work, eventually being pushed onto temporary disability status. The only Dr. that would vouch for anything debilitating was a Psychiatrist; anxiety.
With the second ENT, I had a CT scan ordered but the test date was nearly a month out. Being that he still felt something, I couldn’t take the tension (childhood Leukemia survivor here) and asked him to review the previous MRI. He came back cancelling the CT scan, being satisfied with the quality of the MRI, unfortunately. Thanks to reading on this forum, I learned that CT is the gold standard and referenced the known listed surgeons.
This led me to Shane’s story and to the good news that Dr. Osborne’s practice is only about an hour and half away from me. For insurance billing reasons his office suggested that I again have the 2nd ENT order a CT. I was able to talk him into doing so, and then sped up the process by having it done at an urgent care center that had an open schedule.
After so many endeavors to find a diagnosis, and the general advice among friends that “Dr. Googling” isn’t doing my anxiety any favors, I really doubted the CT would uncover anything, let alone a rare condition like Eagle’s. Then the report came back with the line “Calcification of very superior (2 cm segment) of bilateral stylohyoid ligament. The findings are compatible with Eagle syndrome.” So I had my suggested Diagnosis!
I also had what I needed to set an appt. with Dr. Osborne. I found him to be very calm and re-assuring particularly compared with my 2nd ENT. While he explained there are factors of the styloid other than length, he was very clear that in his opinion no known testing can confirm vascular/nerve involvement to the point of making a promise that surgery will relieve symptoms. At the time, that communication made surgery more of a tough decision, but it wasn’t really an option with the Dr. until we could have the Radiologist provide a measurement and a delineation between the ligament and bone itself. I was sure that I would be ready to schedule if and when the addendum to the report came back. Then I was faced with the line “Upon further review, normal calcified styloid processes are demonstrated bilaterally. There is no calcification of actual stylohyoid ligament below the normal styloid process. The findings are therefore not compatible with Eagle syndrome and are within normal limits.”
So here I am on the roller coaster diagnosis ride. To my untrained eyes, my left Styloid process seems much thicker and kind of growing in an offset manner inward, or as Dr. Osborne put it, medially. Additionally, the distance between the C1 Transverse and Styloid seem dramatically closer together on the left side as compared to right. Again and perhaps unfortunately, the second ENT ordered the test with contrast, and I went along with it due to vascular involvment concerns that I have and were found clear by the radiologist. Now I’m thinking that even with the 3D rendering features of software like Horos for apple devices that I am viewing with, perhaps the contrast is making it a bit inaccurate to view in the bone only stripped down view from a resolution standpoint to pick up ligament calicification vs. bone?
I’ll attach some screen shots from the viewer of both left and right to compare and respectfully ask (plead?) for feedback and suggestions for next steps along with support. Dr. Osborne is requesting a radiologist that he uses have a look at the images, but I am waiting on word they are willing or not.
Sorry so long and I appreciate those that let me catch them up to current. Hopefully my journey can result in some lessons learned and information for the community that suffers through this unique syndrome or at least attempts to rule it out and move onto their individual root cause(s).
Starting with the right unsymptomatic side:
Now a few views of the left to emphasis the distance between C1 and Styloid: