I have turned my CT scan into a 3d rendering. I did not have contrast. I had a dentist say my styloids were elongated and it said so on the first radiologist review. But then i had the ct sent to hackman and his note on the ct on mychart says they are not elongated. My ears feel like they are being stabbed inside and i have tinnitus, head pressure, swallowing problems, pain behind my jaw under my ears, shoulder pain and neck pain, and i get disoriented, lightheaded and presyncope, sinus headaches around eyes, loght sensitivity, pain under chin, tightness on throat. If I lay down I feel like im going to pass out or die. I have so much activity going on with heart and top of head and facial pain when i lie down. This all started with constant vertigo for 8 months and then different types of dizziness for 2 years. My neck has been straight for at least 15 years. Does anyone have any opinion about the renderings? Are my styloids too long? Too thick? Angled wrong? Idk about the stylohyoid.
They do look longer than the average to me, both look as if they have a little joint on them which could be the way they’ve grown, or could be that the stylo-hyoid ligament has calcified where it’s attached to them.
I’m surprised that Dr Hackman didn’t agree as he is usually very helpful and has doesn’t revision surgeries for members who’ve had their styloids shortened, but not enough to eliminate symptoms, by other surgeons. It sounds like you could have Vascular ES from some of your symptoms, a CT with contrast would show that, so it might be worth trying to see one of the doctors on the list who are more experienced with that, like Dr Hepworth in CO, Dr Constantino in NY or Dr Fargen who I think might be NC also.
You’re right that your neck does look very straight; @vdm has posted quite a bit about that which you could use the search function for, it might be worth trying some exercises if you haven’t already, as restoring some of the curve to your neck could alter the angles of the styloids away from the blood vessels and nerves?
If you’ve not tried nerve pain medications, that might be an idea to help with the ear pain- it sounds like glossopharyngeal neuralgia. And try sleeping a bit propped up as that can help with head pressure.
I hope that you can get some help from one of the other doctors!
Really nice job with your 3D images, @Carlak! Besides what @Jules said, I noticed the greater horns of your hyoid bone look quite long & are nearly touching, if not potentially touching your spine. They can cause carotid artery compression which can also produce many of the symptoms you have. I would imagine lying down, especially on your back could bring your hyoid into closer contact w/ vascular tissues & your spine.
Dr. Cognetti does hyoid bone resection. I would also recommend sending your images to him to request a consult on both your styloids & hyoid bone.
Thanks for your response. I have an appointment with Dr Hackman Tuesday. Ive been waiting 3 months to get in. I’ve never spoken to him, I only saw he wrote they werent elongated on mychart. It was very hard for me to get a hold of someone from his office to get the appointment. At the time, I was told Hepworth was not accepting more patients. I am very nervous about which doctor to pick and I only have medicare and dont have much money to spend. I have done a lot of pt and neck exercises. It generally makes my symtpoms worse and have had 4 pts drop me after months of working with them. One said I could come back if I got a neck mri to make sure nothing else was going on besides loss of curve.
Thank you. Should I ask Hackman about how long the greater horns of the hyoid bone are? Does he not do resection? Do you know if Cognetti accepts Medicare?
Yes, you have to be careful with pt, it can make symptoms worse, it’s best to see someone who is aware of ES. As far as I’m aware Dr Hackman doesn’t do hyoid resection, let us know how you get on with Dr Hackman today! (I misunderstood, sorry, I thought from what you said he had turned you down).
I’m almost positive Dr. Cognetti takes Medicare. He is a doctor in a public hospital (Thomas Jefferson University Hospital) in Philadelphia. I don’t think any public hospital refuses Medicare as insurance.
It’s definitely worthwhile asking Dr. Hackman if he does hyoid bone resection as long as you’re seeing him. He also works in a public hospital - University of North Carolina Hospital so your Medicare insurance should cover you there as well.
