I have been reading your posts for the past couple of days and as many of you have said before-thank you, thank you, thank you whoever put this support group together. It has given me so many questions to ask and ideas for how to help my husband. It also allows me to better understand the pain he is experiencing. He has always had trouble adequately describing the pain and now I know why.
The last 10 months have basically been hell for him. Was curious if others with Eagle Syndrome or Hyoid Bone Syndrome (or both) have had a tumor develop on surrounding tissue? My husband had a schwannoma tumor (benign) removed off the outside of his submandibular gland (saliva gland) in March of 2019. It appears that the submandibular gland is adjacent to or sits on the hyoid? Perhaps they were rubbing on each other and caused a tumor or tissue build up? His incision is right where you folks have your incisions for Eagle Syndrome. Unfortunately the removal of the tumor did not help his pain.
He had the steroid injections on both sides of his hyoid July 22 and it has helped so much. He is not 100% better by any means, but feels a lot better.
Thanks for reading!
I’ve not heard of anyone else with a tumour as well as ES on here; your poor hubby & you going through all this, but thank goodness it was benign.
A CT should show whether it’s the hyoid bone processes which are elongated, or the styloid process, if there’s calcified stylohyoid ligaments, or a combination of all 3! If he’s already had one & has a copy you can upload it here- we’re not doctors but can have a look. It’s good that the injections helped, but you’re obviously aware it’s not a permanent solution. There’s lots of info in the Newbies Guide section about surgery & what to expect, & the past discussions can be helpful too, you can search them.
The Doctors list in the Doctors Info Section has names of doctors familiar with ES if you do need to see anyone else.
Hope you can get some help for him soon…
Begin by inserting all appropriate caveats here about my not being a physician. I am so sorry to hear about your and your husband,s struggles. As you most likely are well aware, schwannomas are tumors that only grow directly within nerves. Perhaps you are saying his tumor was on a nerve that feeds the submandibular gland rather than on the gland itself? I am wondering whether the surgeon feels that the nerve damage from the tumor and then the surgery in this very sensitive part of the body fully explains the pain or whether you are being told that there is an additional problem related to the hyoid bone. It seems like it would be so rare for someone to have two such different conditions in very close proximity anatomically, although rare is the name of the game on this site. I so hope that you are not really looking at his having both the tumor and Eagles syndrome!
Thank you Jules! I have gotten so many ideas. He has had two CT scans so will try and get my hands on them. Not sure if they had contrast or not. He is going to pick up a CD of his MRI scans on Tuesday. He had one with contrast and one without.
That is a good point and one I will need to narrow down with the surgeon. The tumor was listed as a schowannoma on the pathology report but perhaps they just classified it as such. I didn’t think it was on the nerve itself so something to look into. Thank you!
It would certainly be disturbing if the pathology report was incorrect! Schwann cells are support cells that wrap around neurons to form among other things the myelin sheath. Hopefully the doctor can give you some clarity about whether this pain is bad and expected or bad and unexpected…