Hyoid bone syndrome, here I am again

So sorry that you’re no further forward with your pain…I hope that you can get some answers & some treatment! Hugs and prayers :hugs: :pray:

I tried Dr. Congetti today and unfortunately couldn’t even get an appointment. I even resorted to emailing them personally myself and did not get a response.

I know this isn’t my post, but just wished to remark on how excellent, helpful and knowledgeable your reply is! (A quick question - I can’t quite work out what cross section axis of the neck is shown?)

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Interesting about Dr. Cognetti. Did they give you a reason for not giving you an appt. @1speechpick ?

@Blodyn - I’m glad what I wrote is helpful for you. Jules wrote some good longer posts about ES symptoms & their causes that are in the Newbies Guide section under the Welcome category on the Home page (click on the butterfly avatar above left to get there). They’re well worth reading to get a better understanding of what may be causing symptoms you have. Here’s a link to one of them:

I assume it’s a slice from a CT scan. The image appears to be looking down at the hyoid from the above as opposed to from the side.

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Thanks Isaiah, just can’t work out the orientation & what’s where!

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Hi @1speechpick, first I would like to welcome you back and I am happy that you are feeling bit well now. I really can’t say whether it does or not since I am not a doctor but given your past medical challenges, it is hard to attribute headache (which has many causes) to hyoid tip rubbing against a cervical bone. Pain around the neck, yes.

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Thanks @KoolDude. I happened to find this photo which shows the depression of the hyoid on the right, especially the right greater cornu. My suspicion is that the suprahyoid muscles get really really right causing some of the pain, then the headaches. As you can see the suprahyoids are likely stretched beyond capacity.

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I see that but the mechanism of that causing headache is bit over my head. But then anything can cause or contribute to the development of a headache. How do we know, for example, that CSF fluctuations (increases or decreases) is not to blame in your case.

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Well, the saga continues. I’ve continued to have progressive symptoms. I met with Dr. Chettry and he thought I had something additional going on, stating that HBS symptoms aren’t progressive. As it turns out, he was totally right. I landed in the hospital for 3 days where they did a lot of testing, and I learned some things.

Meet Esmerelda (pictured below). She’s a 7mm x 5mm pituitary adenoma secreting growth hormone and causing early-stage acromegaly. No wonder I’ve continued to get sicker despite medical intervention. I’m working on scheduling her eviction but don’t have an exact date as of yet. On the upside, the brain MRI and MRV all looked good. Hope everyone is well.

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@1speechpick - WOW! WOW! WOW! What a sneaky little devil Esmerelda is (I love you gave your adenoma a name :joy:)! While you had your brain looked at for vascular constrictions, she was subtly growing in the background & causing other problems. Any possibility that the extra hormone secretions contributed to your other problems? How fantastic that Dr. Chhetri recognized your symptoms & caught this early!! God is good!!!

I hope this is THE END of your health challenges & you experience full recovery of your ability to enjoy your life & family fully. You’ve had quite the interesting medical journey. Thank you so much for staying in touch & allowing us to support you each step along the way. Please keep us in the loop during your recovery, once Esmerelda is removed. :pray: :hugs: :two_hearts:

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I do have HBS but Dr. Chhetri pointed out he thought something else was up, because HBS is not a progressive condition. Ironically, I’ve been talking to my neurologist about possible endocrine issues for a few months. Finally I demanded a pituitary MRI, and there was Esmerelda. This fills in a lot of gaps. My endocrinologist says that elevated IGF-1 levels (in acromegaly) can cause the brain to not re-absorb CSF well, causing higher pressure. But honestly I haven’t researched it. I hope everyone is well!

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Good job advocating for yourself!! Will Dr. Chhetri take care of the HBS surgery for you & has he referred you to a surgeon for the adenoma removal, @1speechpick?

Goodness, what a journey you’ve had! I hope that Esmerelda’s eviction goes well, let us know when you do get a date. More prayers and hugs for you :hugs: :pray:

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Look at my pictures, how the hyoid bone presses, but does not compress the artery, and the common carotid artery already presses and compresses the left internal jugular vein. The horns are bitten off, this is a very simple operation. Headaches cannot occur if it does not compress the blood vessels. It is unlikely that the nerve is being compressed; the nerve is thin and evasive, and the horn of the hyoid bone is also thin. Compress IJV almost without Eagle syndrome(basic large transverse process С1 ) in triangle atlas C1 and digastric muscle and Musculus stylohyoideus, TOS and hyoideum bone identify on your own despite doctors’ diagnoses - #2 by Filatov





@anon67578920 - Actually, headaches can occur even without vascular compression. I have had migraine level headaches caused by my trigeminal nerve. It seems once nerves are irritated by ES, they can maintain a level of hyper-sensitivity long after the styloids are removed or the hyoid bone’s greater horns are reduced in size. Many of our members take nerve pain medications far beyond the time of their surgical recoveries simply because nerves haven’t fully healed or are too easily excited & continue to cause pain.

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There is only direct injection of a substance into the nerve from its pain, blockers. After operations, there is swelling of the muscles, which puts pressure on the nerves and also on the blood vessels. There are no nerve blocking pills; there are blood thinning and muscle relaxing pills. :smile:

need Dicom files CT

Anti-seizure & anti-depression medications are used to help stop nerve pain regardless of the source of the pain. True that most nerve pain will go away on its own when caused by swelling, but when it doesn’t, nerve pain medications can be very helpful in breaking a pain cycle which can ultimately promote healing.

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or general tranquilizers that reduce overall neuroconnectivity. but not pills which block one nerve :smile:

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