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Today is my last day with no neck scar. Tomorrow I have surgery to remove my styloid process. If it works, I’ll be able to eat solid food for the first time in 2022.
I’ll also have a bitchin scar on my neck.
I’m not usually one of those kinds of people who solicits “good vibes” but I’d be thankful for any good wishes thoughts feels you’ve got.
Today, 10 months after being told i need a styloidectomy and venoplasty i finally had my consult (and surprise ultrasound) with the vascular surgeon who will work with my ent . (there were mix ups and his office just does NOT answer their phone 95% of the time and didnt call back for months??) I'm now all cleared for surgery, tho the last time this was scheduled (and canceled ) it was a 7 month wait 😭. But there's a chance my vagus nerve is all tangled up in there and im v excited to see if theres any dysautonomia difference after all this is done.
https://www.instagram.com/p/CGjb7IJD3wi/
Pre-opp appointment for my styloidectomy and venoplasty today! The dr was concerned that my #LongCovid symptoms stuck around so long and that we may have gotten it twice (didnt test in time to be sure) so he ordered some tests too. Ive never thought i had any autoimmune thing before though so im guessing the results will be fine...
https://www.instagram.com/p/CKNBiEcDnQO/
As soon as i layed down like this i immediately was hit with pulsate tinnitus and what i can only explain as a feeling of blood congestion in the back of my head/neck suggesting blood was trying and failing to drain (maybe through my collateral veins that developed when my jugular became comptessed. Just over a week til styloid yeeting time!
https://www.instagram.com/p/CKfG6V9DPPh/
Case Report
"Eagle’s syndrome has been traditionally defined as an elongated styloid process causing symptoms of cervicalgia, otalgia, and throat pain. These symptoms can also be caused by the proximity of the styloid process to the transverse process of the cervical vertebrae even in the presence of a normal length styloid process. In our series, the transcervical approach is safe and effective for styloid removal, and is preferred when the styloid demonstrates normal length and is in close proximity to the transverse process of C1."
"Although all 4 patients eventually had excision of both their styloid processes, the fact that all 4 had symptoms on the side with the shorter styloid process and more significant compression demonstrated to us that, in addition to the length of the styloid process, its relationship to the cervical vertebrae also played a part in symptom manifestation."
"Other than the pain and discomfort that may be due to styloidogenic impingement of the jugular vein and associated neurovascular structures, several studies have looked at chronic internal jugular vein compression and its proposed sequelae. Associations have been made with multiple sclerosis, migraines, and pseudotumor cerebri. A study by Dashti et al reported 2 cases of internal jugular vein compression by the styloid process causing pseudotumor cerebri that were resolved with styloidectomy. Patient 1 in our series also had a diagnosis of pseudotumor cerebri that was refractory to multiple spinal taps. His symptoms of headache, dizziness, otalgia, and cervicalgia, however, resolved after excision of his styloid processes."
Vascular Eagles is even less known and understood by professionals than regular Eagle’s, so it’s great to see this paper pointing out that even non elogated styloids can cause problems, like mine!
For #RareDiseaseDay I want to share some info about my most recent diagnosis: Eagle's Syndrome. There are two types: classical and vascular.
In VASCULAR TYPE (which I have) the styloid process may be elongated beyond 3cm but isn't always (mine isn't), but due to anatomical variation, the styloid may still be pressing on the carotid artery or jugular vein, and often the vagus nerve, too. Often the jugular & vagus nerve are squished in between the styloid process & the c1 vertebra, as mine is. (Some people the styloid process isn't involved but instead certain over-tight muscles in the area create the same effect. Idk if that's technically ES, but it should be imo)
This can causes problems with: getting oxygenated blood into the brain (carotid) or draining the deoxygenated blood out of the brain (jugular, which needs to happen before oxygenated blood can get in there via the carotid) leading to intracranial hypertension & possible cognitive & vision impairment; tinnitus (including pulsate tinnitus); pain and discomfort around the compressed area; possible ear problems; etc. The vagus nerve compression may contribute to dysautonomia as well (including syncope).
In CLASSIC TYPE, the styloid process is elongated beyond 3cm, &/or the stylohyoid or stylomandibular ligaments are calcified.
These can then cause a lot of trouble in the throat region, including: stabbing (sometimes all the way THROUGH the throat), face and neck pain, palsy, difficulty swallowing, tinnitus, TMJ, the feeling of something being stuck in the throat, syncope, and sometimes can even dissect the carotid artery, etc. As the NIH's rare disease page says:
"About 4% of people have an elongated styloid process. However, only a small percentage of these people (between 4 and 10.3%) have symptoms. The incidence of Eagle syndrome is therefore estimated to be about 0.16% (1 in 62,500)"
(there is no estimates I can find on vascular type, but drs know about it even less than classical) ---- Eagle's syndrome is not well known by doctors. Dentists actually seem to catch it more than anyone else. There have been a lot of people with super long styloids poking INTO their throats and still the doctors refuse to acknowledge that Eagle's can cause problems. That's a huge issue for basically everyone with any kind of #RareDisease-- doctors can be aggressively ignorant. We need more awareness so more doctors know about it, and more regular folks know about it so they can seek out ES knowledgeable doctors in the meantime!
More info: https://rarediseases.info.nih.gov/diseases/9401/eagle-syndrome https://radiopaedia.org/articles/eagle-syndrome?lang=us &
Eagle Syndrome Group Eagles Syndrome
(Also, though I haven't seen it, I hear a couple weeks ago Eagle's Syndrome was featured on Season 3, episode 14 ("Influence") of The Good Doctor! (https://abc.com/shows/the-good-doctor/episode-guide/season-03/14-influence))
Background: There is conflicting data on the effect of carotid revascularization on cognitive function. Objective: To examine cerebral blood flow and …
I know some folks with vascular Eagle's have carotid compression. This is about fixing stenosis, but I'm guessing that they are pretty similar in their reducing the amount of blood flow to the brain. Anyway, this shows that fixing that significantly improved cognitive function!
Has anyone here had carotid compression + surgery? Did you notice a difference afterwards?
