That’s rough, a long wait…good you’re on the cancellation list, we have had members get in sooner with doctors…you don’t want to annoy his office staff, but maybe a polite phone call to remind them you’re happy with a cancellation appointment every so often might help?
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Thanks @Isaiah_40_31 , that’s really relieving to hear that I am scheduled because there is actually a problem (and most likely ES or hyoid). Was worried I’d wait until January just to find out I was somehow fine. All my previous consults and testings is what has me looking forward to change, and so now I can have hope for better health at least until January. Just sucks that it’s so far out.
I hae a wedge pillow that I’ve been using for about a month now. Works pretty good. I’ll ask my ENT or family doctor about blood thinners. I’m worried about their reluctance though. Not totally sure how I’m going to discuss with them about Dr. Cognetti yet. They are either going to finally open their eyes or think I’m wasting my time.
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I had the same thoughts @Jules . I’ll give them a jingle every once in a while.
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Honestly @TML - It doesn’t matter what your doctors at home think about you consulting an “outside” doctor. What matters is they didn’t offer to help you &/or aren’t able to so you had no other choice.
Maybe approaching the blood thinner as a known help for symptoms like yours would at least put a positive spin on why you’re asking for a blood thinner Rx. I don’t know if there is any research that mentions blood thinners helping reduce IH symptoms, but you could take a look at our research paper list (on the home page - click on the white butterfly in the upper left of this page to get there) or do an internet search to see if you can find a research paper justification to take to your doctor.
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@Isaiah_40_31 any chance there is a list somewhere or you know about any surgeons well versed in hyoid bone syndrome? I was hoping to send my scans off to a surgeon (beyond dr. cognetti of course) to get their opinion. That way I know how to cope with my symptoms best until I get the rundown by Dr. Cognetti. Might even be able to get a Canadian ENT to do the hyoid stuff if i get enough evidence!
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@TML - Dr. Dewan in Louisiana is the hyoid expert on our Doctors List. She doesn’t deal w/ ES though, only hyoid bone & thyroid cartilage issues. She requires in-person initial consults, but since you’re outside of the US, you could request an exception. Sadly, I don’t know who in CA does hyoid bone surgery so you’d have to do some research on that.
•Dr. Karuna Dewan, Ochsner LSU Health Shreveport - Academic Medical Center - Specializes in Hyoid Bone Syndrome surgeries
1541 Kings Hwy, Shreveport, Louisiana, 1-318-626-0050
Karuna Dewan, MD | Ochsner LSU Health
Needs a PCP referral
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There are a few other doctors on the list who we’ve been told do hyoid surgery, Dr Dewan is the one most members have seen but in case you can’t see her:
Dr Dinesh Chhetri, UCLA, Los Angeles (ENT/ Otolaryngologist, Head and Neck Surgeon) Dinesh K. Chhetri, MD - Otolaryngology - Head & Neck Surgery | UCLA Health (Possibly not doing Eagles surgeries any more [1/13/24], not sure if he is still doing Hyoid Bone Syndrome surgery)
Dr Coniglio, Rochester, John U. Coniglio, MD | Rochester Regional Health does hyoid bone surgery & works with Dr. Taka Higashimori for VES and C1 shave, also does hyoid trim if needed.
•Dr. Taka Higashimori,
Dr Brad deSilva, OSU Wexner Hospital, Brad DeSilva, MD | Ohio State University Wexner Medical Center He has also done hyoid bone surgery.
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Thanks @Jules ! I think I am going to reach out to Dr. Coniglio, as NY is fairly close to Nova Scotia. I see they are accepting new clients as well.
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Thank you for posting a much more complete list of surgeons who deal w/ HBS, @Jules!
Hope he can help, are you able to chat with his office beforehand to suss out whether he could?
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Just an update. I’m FINALLY getting somewhere with the Canadian health system. I paid for a second radiologist opinion for my CTA. My request was for them to look further at my hyoid bone with respect to my carotid arteries. I didn’t even mention my styloids to them because I didn’t want to bark up that tree since I’ve been dismissed so many times about them and didn’t want to lose any credibility about my hyoid concerns. And I already know my styloids are an issue because I have an initial with Dr. Cognetti. I really just wanted some feedback on the hyoid piece so that maybe I could get that dealt with here in Canada for free. See attached the report saying that left greater horn is in contact with left ICA and that the left styloid (which I didn’t even bring up my styloids to them) is in close proximity, and that it’s conceivable that certain head movements can cause left ICA compression. This is a huge step for me. I’m not even going to fight them on the carotid sinus nerve, or the internal jugular veins that they didn’t mention. I got the report faxed to my ENT surgeon and if he asks to do more imaging in certain head positions I’m going to fight him on it to just trim the damn hyoid - I’ve gotten 3 head/neck CTs, neck MRI, 6 neck xrays, abdominal CT, and abdominal xray all within the past 8 months or so. I don’t need more radiation when it’s pretty obvious at this point my hyoid and styloids are causing my symptoms. I also have about 10 sets of bloodwork showing that my electrolytes and whatnot are fine. Hopefully my ENT just finally listens and does something about the hyoid.
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And don’t get me started on the radiologist saying my styloids are 3.3cm and then following it up stating that they are not elongated lol.
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@TML Definitely a HUGE VICTORY! 
Absolutely you should stand against any further scans! You’ve been through enough already!!
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Well that’s something, at least they’ve confirmed the hyoid involvement! Interesting how a 3cm styloid could reach C2 level! I hope your ENT is helpful; do you know if anyone is practising hyoid trims , or if your ENT has ever done it? I don’t know if the same advice we give about using a doctor with experience applies to a hyoid trim, if it’s an easier surgery…I know you’re stuck in Canada with your healthcare system though & obviously don’t want to keep paying for surgeries in the US…
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@Jules I think 3cm is definitely long enough to reach C2 depending on the angle of the styloid. The more straight down it is angled, the shorter it would need to be to reach C2 (and the straighter down it is the more likely it would compress IJV between itself and C1).
Yes I really hope I can get the hyoid dealt with here. I certainly can’t imagine that hyoid surgery would be as invasive/risky as styloidectomy. Hopefully my ENT has trimmed some before or knows someone who has!
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I can relate to your symptoms very well…i feel all symptoms you mentioned about..my styloid is of 42 mm on right and 30mm on left…my main and unbearable symptom is brain fog,lack of attentiveness…https://drive.google.com/file/d/135So5QzXnlKkl3GpxjWMrrS7Y2fwKVTM/view?usp=gmail this is my scan
@madhavshrma I’ve seen your scans a few times now. Glad your doctor is on board with your styloids and hyoid causing your problems!
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@madhavshrma any updates? Have you had surgery for your styloids and/or greater horns?
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Would you be willing to look at my CT angiogram? I only have the files from the disc saved to my computer if so. Would that even work?
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@Michelled yes I can take a look tomorrow for you. If you can, create a google drive folder and copy and paste all the CT files into it and then private message me on here a link to the folder
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