In the June of 2021, I started to suffer from GI issues along with dermatology problems and went through a barrage of medical testing & treatment without much avail. This included my PCP, functional medicine, GI specialist, and chiropractor. Towards the end of summer, after a lot of dietary & lifestyle changes, my dermatological symptoms started to subside, but the GI issues remained. I was hopeful that I was moving in the right direction.
In October 2021 (after a bout with COVID-19 in September), I developed insomnia, visual snow, light sensitivity, and intense anxiety, literally overnight. My initial thought was that it was from COVID & would be temporary, but as the weeks went by and the symptoms remained, I started to look into other possibilities. As November rolled around, unilateral tinnitus was the next symptom to arise, shortly followed by ear pressure & Eustachian Tube issues. In December, blurry vision, migraines, and head pressure began. After multiple visits to the optometrist, my PCP, a colonoscopy, a ton of lab work, and multiple visits to local ENT’s, I was told there were no definitive explanations for my symptoms other than I might have TMJ Disorder.
I finally went to Caring Medical Florida to see Dr. Hauser in December 2021 because I suspected cervical instability as a factor after a slew of internet research (I was a multi-sport athlete, have a history of high-velocity chiropractic work, and I work in a fast-paced job that required a lot of “hunch over” time on a laptop & cell phone phone). After my testing in his office, he discovered that I had a completely occluded jugular vein when sitting upright & that it was still compressed while lying down. He ordered & CT with 3D reconstruction & venogram, which confirmed his suspicion of elongated styloids (4.1 and 3.7), and jugular vein compression (we also suspected nerve compression because my vagus nerve tone was significantly low). The right side was completely calcified & left was not (though that was the side that had way more compression). I also have been diagnosed with craniocervical instability in several cervical spine ligaments, which may or may not also play a role in my symptoms, so only time will tell. Dr. Hauser seemed to believe the cervical instability & eagles syndrome onset are related (one often exacerbates the other). Further, as I lost muscle mass in 2021 (over 25 lbs of muscle due to being sidelined from the gym for over 6 months), my neck and shoulder muscles weakening, along with ES & instability may have also led to my onset of symptoms.
Finding a Surgeon:
I was referred to Dr. Osborne in LA and he agreed to do my surgery, but due to not accepting insurance, and it being such a long way to travel (I live in Ohio) with a myriad of medical issues, including Eustachian tube dysfunction which made flying undesirable, I consulted Dr. Hackman at UNC in January 2022 after coming across this site (Dr. Cognetti could not get me in for consultation until late spring/early summer). In the consult, he seemed supremely confident in his ability to perform the procedure, and his track record is quite good. I opted to schedule my surgery with him. My bilateral styloidectomy surgery was performed on Monday 2/28.
The first 2 nights were quite rough. I was scheduled to stay one night in the hospital, but ended up staying two. My post op issues include: lots of swelling & pain which was expected, both ear canals were numb, including my left ear lobe, lots of facial numbness, my jaw could hardly open, issues opening and closing my right eyelid, and new onset tinnitus in my left ear (previously unilateral in right ear). I also had some reactions to the anesthesia (known as SUCK), which included burning eyes, nausea, and anxiety/panic.
After the first 5 days, the nausea & burning eyes subsided & the jaw is getting better slowly. I also started to notice my tongue seemed a bit “loose” on the floor of my mouth and feels uncoordinated. I initially attributed this to the removal of the styloid process & peeling of styloglossus muscle during the surgery, but wasn’t sure. If anyone has any insight into what happens to the styloglossus muscle (does it still function or not), I would greatly appreciate a comment!
On day 7, I started to have a clicking/popping and pain with swallowing (saliva, liquids, food) in my jaw & some pain/tension in my neck.
My 1-week surgery follow-up was on 2/8 (8 days post-op) and Dr. Hackman seemed confident that the ear lobe & ear canal numbness would subside in time, as well as the newly onset tinnitus (I still have a lot of inflammation & some fluid), other facial numbness, pain & clicking in throat, jaw mobility, as well as my issues with my tongue (which he believes is due to post op inflammation & muscle irritation, but still unclear as to styloglossus after follow up) would all resolve in time.
Today is day 9 post-op and my post-op symptoms are still pretty intense, I also MAY be experiencing the beginning of “first bite” but I am not 100% sure. Definitely having pain in the jaw when I begin to chew (hoping it’s just post-op soreness). But I am hopeful for a full recovery from the surgery, as it sounds like most of Dr. Hackman’s patients do!
As far as my initial ES symptoms go (GI issues, insomnia, visual snow, anxiety/restlessness, ear pressure, tinnitus, light sensitivity) I have not had any resolution yet (admittedly was hoping for a magical “YES!” moment when I awoke from surgery), though I have had a few decent nights of sleep (5-6 hours which is a lot compared to what I’ve been getting lately, though a far cry from my normal 8-9) post-op, which gives me some hope! I also plan to start treatment for my cervical instability this year, so I am trying to keep that in mind as well.
I plan to continue to update my recovery, and look forward to hearing from members! Hope this helps!