Hi all,
Those who frequent the form have likely interacted with me or have came across some of my comments helping people with their imaging over the past few months.
Months and months ago I posted my own journey to the forum and what I thought was happening to me. I have a whole constellation of vascular ES symptoms - head pressure, pressure headaches, ear fullness, sound sensitivity, eye pressure, dizziness, vertigo episodes, breathing difficulties, collapsing episodes, involuntary eye movements, lateral upper neck pain, and more.
I had discovered that my IJVs are compressed - especially on my left side between my left styloid and C1 transverse process. I also have posterior cervical collateral/compensatory veins on my left side.
I ended up sending my CT scan to Dr. David Cognetti and his front desk called me and booked me a surgery consult with him for January. So I never received any official diagnosis, but I knew if one of the top ES surgeons in the US is booking me in for surgery consult, than there must be something going on with my styloids.
This could explain the intracranial hypertension symptoms, but didn’t explain my stroke-like symptoms.
We (myself and members of this forum) then discovered that my left greater horn is in direct contact with my left ICA and entrapping my left ECA. This area of the left ICA is particularly important because it is important in regulating heart rate and blood pressure. Sometime doctors will place their fingers on a patients neck in this area to test their vasovagal response (to see how it alters blood pressure). So it’s likely that the greater horn is causing my blood pressure to rapidly drop with certain head movements and swallowing. In thinner individuals, the vasovagal response is particularly exaggerated, so for someone like me who is a 5’11” male but only 160lbs (135lbs now due to being bedridden and muscle loss) a bone coming in and out of contact even lightly with the carotid sinus area is enough to cause me to buckle. This and in addition to my left vagus nerve likely being compressed, my heart rate and blood pressure has been all over the place.
Literature-wise, this seems even more rare than ES. ES is already next to impossible to get diagnosed in Canada, little alone this random freak anatomical nightmare of the greater horn.
A few months ago I went to an ENT and he shut me down pretty quick about ES and hyoid bone syndrome saying that it is very rare and that radiologists haven’t noted it as a problem. I was discouraged, but decided to come back to him with all the research on ES and hyoid bone syndrome. All the case studies and radiology research. If Western based medicine is operating upon evidence-based research, I was going to bring all the research.
I stumbled into his office a few months later. Fortunately (and unfortunately) my dizziness was out of control that day and he found me in his office’s washroom with my head in the toilet. He saw first hand how debilitated I was. I crawled my way to his office chair and started spilling the research. I could tell his demeanor about ES and the hyoid bone being a culprit. He decided to refer me to another ENT surgeon he knows who is familiar with ES and has skull-based expertise.
I met with that ENT yesterday. And oh my god, this storm if misery and suffering may be coming to an end. He sat down with me and went through my full imaging. He saw my left greater horn pressing against my ICA. He saw the left IJV compression by the styloid and the posterior collateral veins. I stared complaining that my radiology report stated that my styloids are 3.3cm but the radiologist followed it up by saying they aren’t elongated. I started talking about the definition of ES and he said that don’t worry and that I don’t need to convince him about that. In other words, he knows 3.3cm can be problematic.
He is booking me for surgery asap for both the left greater horn and left styloid. He said that this is just the low hanging fruit and if I don’t see resolution of my symptoms there is always the right side. Transparently, he said he can’t guarantee how much surgery will help. He said my constellation of symptoms are a bit more complex than most ES patients so he didn’t want to lie about suspected results.
I made sure to ask the important questions. He does transcervical approach. Given his skull-base expertise he has lots of experience with styloidectomies and tumor removals at the skull-base that required styloidectomy. I told him that I don’t care about cosmetic results and he happily and jokingly replied “but I do” - so I can be fairly confident that he’s going to make the scar as least noticeable as possible so that’s great. He cuts above the level of C1. He has done 50-60 styloidectomies and reported that he has had no issues. I don’t have any reason to suspect that he will botch me. I also get to save tens of thousands of USD (the conversion of Canadian to USD is terrible btw) compared to going with Cognetti. Cognetti is a spectacular surgeon by the sounds of things, but 50-60 styloidectomies without any poor outcomes is a large enough sample size for me that I feel safe with the decision.
He’s removing the greater horn (didn’t actually get into how much of it he’ll be removing but frankly I’m not concerned about that - as long as it doesn’t touch my carotid sinus I’ll be good) and styloid through the same incision. I don’t have an appointment date yet, but I suspect it will be soon (whatever that means in Canada lol) and will update you all.
). Your own research & self education about scan reading has not only benefitted many of our members but now you, too.
I will also be praying that a surgery date will be offered to you extremely soon & that this one surgery will be positively life changing for you.
