yup!! interesting article
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Hi @churchyardyew 
I am so sorry to hear that you are back in bed awaiting further progress for your CSF leak/s. I hope you can get some positive outcomes soon on lining up a specialist team. All the best!
Iām still having difficulties and canāt help but think itās still has something to do with the front of my neck. I have an appointment in Australia lined up for next month with Dr Elliott but thatās more of a ES /jugular compression consult. Iād also like to pursue the front of neck/hyoid area with a specialist. When viewing my 3d ct I can see I have a large amount of calcification to the thyroid cartilage on the outer edges and Iām wondering if this might be compressing or damaging the carotid sheath as it moves. Aside from pain on the larynx when I touch it, I have pain that comes and goes (triggered by lying down and tilting my head down) right where the thyroid cartilage sits in behind the sheath. The symptoms that are bothering the most are an increased heart rate (pounding) and persistent sweating/feeling hot. I am thin and so feeling hot while my fingers and toes are cold is strange.
Before I had my left styloidectomy I had an intense feeling of my face being pulled toward my skull on the left side and I can see my thyroid cartilage sits slightly to the left even post surgery.
All of my symptoms started 12 years ago but I think this may have been something that started during childhood. I donāt have flexible joints so I havenāt pursued an EDS diagnosis but have had a lot of pelvic trauma (small injuries) early in life. My pelvis has been locked up for years and Iām just starting to get some movement back in it through physio. I also have just been diagnosed with a extensive right hip labral tear from an old sports injury 16 years ago, so at this point Iām thinking my posture has been affected and my neck has been taking the brunt of it. I also have three cysts (one a Tarlov cyst) on my s2 - not sure if these are could be causing a tethering type issueā¦
Will post some images of my calcification below
I think there is a hyoid and thyroid issue. Your right side of the hyoid in particular looks like itās in contact with the carotids. And, yes, extensive thyroid calcification. Some as you age is normal but I think thereās probably an excessive amount due to the hypermobility that is pressing on structures. Can you get to Dr. Dewan in Louisiana? I know she has seen people from as far away as Australia. There are other surgeons, too ā¦ You may have to do an international search. Thanks for the well wishes, Iām having a different surgery on Friday, leaving tomorrow, so I wonāt be back at the computer for a while. But my advice would be to contact Dr. Dewan and start the process of scheduling because it can take a while. Sending hugs.
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Hi @churchyardyew thank you so much for your reply and giving your thoughts. I would love to book in to see her but know the costs will be huge, even just for travel from New Zealand. I feel like I read about someone having surgery in Australia around the time I first joined the forum in October so will look into this first. I think the one sided pulling Iāve had due to the bilateral elongated styloid has caused my larynx/hyoid to pull to the left and now itās freed from the ligament, I can feel the pain now independently of the styloid regional pain. Wish I could just twist all the anatomy back the other way!
All the best with your surgery and thanks again 
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I agree w/ what @churchyardyew said, @BraveKat. In one image your right greater hyoid horn also looks very close to your vertebra, but itās hard to tell for sure because the angle of the image can deceptively make things appear worse or better than they really are.
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That makes sense!! I was looking through hyoid bone papers to see what other surgeons or specialists exist in the international landscape and there were more than I expected. If you are searching that way, you have to remember that this is a resection of the greater horns, transection of SH ligament at the lesser horns, and removal of excess hyoid/thyroid cartilage build up, NOT the typical hyoid surgery people talk about (suspension which involves taking out the middle of the hyoid). Anyway you probably know all of that but hopefully someone who reads this thread later will find it helpful. Best of luck finding a surgeon closer to you. God knows this doesnāt need to be any more difficult for us patients than it already is!! 
Hugs
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Thank you for your thoughts @Isaiah_40_31. Do you both mean my āleftā side (but the right side in the images)?
This is the image shows your right side better than your left & the right greater horn appears close to your cervical vertebra to me. Your greater horns look close to carotids on both sides, but I canāt tell how close your left one is to your vertebra in this image. As I said before, what Iām suggesting may not be accurate at all due to image angle. Iām not totally sure about what in the picture is thyroid cartilage calcification.
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Yeah, I think it is a little too hard to tell with the angle. This one makes it look like the right side is quite bad.
But then the first and fifth images from the top kinda make it look like the left side is worse ā¦
I think a sequence of axial images would help us be more specific but overall, definitely looks like my imaging did and I had bilateral surgery.
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Hyoid issues are almost as hard to get dealt with as styloids which is crazy to me. So rare that doctors donāt take you seriously. I want to tell them just because you havenāt seen it doesnāt mean itās not the issue. Iāve shown this photo of my left greater horn digging into the area of my carotid sinus nerve and my ENT STILL needs another radiology opinion. Like wtf. Itās clear as day. Iām seriously confident that I could spend a day showing grade 4 children carotid sinus anatomy and they could spot my bone digging in. There is literally no other reason why I, a healthy 27 year old with perfect lab results, should be experiencing stroke-like symptoms. Just trim the damn bone doctor. Itās infuriating.
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@BraveKat I think it was @F_t who had hyoid surgery in Australia, & I think did well with this doctor:
Dr Richard Lewis, ENT, in Perth, has performed some ES surgeries apparently but also hyoid bone surgery for clicking larynx and venous compression.
I canāt find the discussion at the moment thoughā¦
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Here are some links to @F_tās posts:
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Hi @BraveKat that would indeed be me! Had surgery about a year ago with Dr Richard Lewis in Perth. It has totally changed me! The pain and discomfort I was feeling is very much diminished. While I still have some residual click when swallowing, it is so much better than it used to be. Dr Lewis removed the back part of my hyoid bones and resected 2mm of cartilage at the front. In my opinion, he could have taken a LITTLE bit more from the front just to really get rid of that abutting of bone, but you just donāt know until you do it, how much meds to be done. I may go back in the future to have another surgery but at this stage for me, I can deal with the slight annoyance. I would definitely go back to Dr Lewis and have recommended him to others, including those overseas. As he had two patients in one week for hyoid bone resection, he says he is very interested in it and is happy to take on more patients. I know Perth is a fair way from NZ (we just came back from holidays there) but if you plan your trip well, you can soak up a bit of West Aussie sunshine during your recovery. Let me know if you need any more info, Iām more than happy to help.
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Thank you @F_t for coming back to share info, and so pleased that the surgery has been successful for you !
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