Hi Eagles Family!! Hope everyone is having good day.
I had another consult today. I saw Dr. Brad Desilva, who is on the “Eagles list”. I wanted to let you know of my experience, as this information could help others. Initially when we talked he seemed very nice. But as we delved further into things he became increasingly harried and dismissive. I brought in a CD (head/neck angio) that I requested he upload and look at…which only increased his frustration. I tried to show him some of my 3D images, and that didn’t fly either.
He thinks it’s unlikely that I have Eagles because my styloids don’t look long enough. He said I may have hyoid bone syndrome but couldn’t confirm either way. He said we could try a hyoid bone reduction and see if that helps the symptoms. A neck CT without contrast was ordered. And that was the end of the appointment.
I miss the pre-covid days of the doctors being empathetic and really taking the time to dig to the bottom of trying to find of what’s causing the pain. I know there are still some physicians out there that do this, but they are far and few between.
My neurologist thinks I have Eagles or glossopharyngeal neuralgia. So, on to see the neurosurgeon next week. I’m wondering if there is a test that can show if a nerve is being compressed by a blood vessel.
Take care everyone! I hope you’re having better luck than me at finding answers.
I wouldn’t be so quick to run away from Dr. DeSilva. Based on the concerns about possible carotid impingement by your hyoid bone, if Dr. DeSilva is willing to do a hyoid bone reduction, that might be a good place to start. We have had members who thought their symptoms were being caused by the styloids (which were slightly elongated) but were also diagnosed w/ hyoid bone syndrome. Once the the greater cornua (horns) of their hyoids were reduced, symptoms fled. It may be you would have the same good results.
Not many doctors do hyoid surgery so you are blessed to have visited a doctor who potentially offered that to you. Elongation/deviation of the hyoid can also affect the GN. We saw in your frontal 3D CT image that your hyoid is deviated out of normal position so it could indeed be the cause of your GN issues. I think it would be very worthwhile continuing to pursue the hyoid problem & put ES aside for a bit.
P.S. You are still welcome on our forum if it turns out you have HBS instead of ES as it is very similar to ES so we are still able to support you & encourage you.
That’s fair advice. My problem is, he wouldn’t entertain looking at my images. I, too, thought the left hyoid bone was clearly out of place. However, he made nothing of it. He reviewed the CT angio CD briefly and said it all looked fine. Yet what I see shows something out of place. So, I will move forward with the neck CT and go from there.
I think part of my problem is, I want a quick answer. But this is a journey, and I need to start to accept that. Thank you for your advice and support. It is greatly appreciated.
I don’t blame you for wanting a quick answer. Your symptoms are bad & have plagued you for long enough. Now it’s time for answers (which aren’t coming fast enough)!!
In my opinion, you’re making the right first step w/ Dr. DeSilva by getting the scan he’s ordered. Maybe he just needs to feel like he’s in control of what he’s looking at & it’s not info coming from another doctor’s orders. There are doctors like that. Kind of silly & a waste of time & $ for the patient. On the other hand, maybe the scan he’s ordered is looking for something more specific than what yours showed (can’t imagine that scenario since yours showed EVERYTHING! in great detail). Ya just never know until you know.
It is all too common with these ENT doctors to dismiss you if they don’t see long, calcified Styloid. They are not looking at angle and the curvature of it but I would say do not give up. I am pretty sure you are onto something. Your Styloid are thick and might have some calcification based on what I saw on the 3D images. I am also sure you have Carotid entrapment by the hyoid bone.since it is there. I also suspect your right Styloid since it appears to be bigger and angled inside towards the Carotid artery. So your symptoms are consistent with nerve and carotid irritation and I would go to another open minded doctor like Hackman or Hepworth. Those guys tend to be the best for vascular eagles. Do not be disappointed. We all went through this.
BTW, I don’t buy the idea that the new CT without contrast will show something that the contrast CT won’t but hey that is my opinion.
@Isaiah_40_31, I hate to have the radiation exposure, however, my old CT head/neck angio is 18 months old…and it doesn’t have styloid measurements. The new neck CT will include measurements and will also show the hyoid bone.
@KoolDude, thanks for your information! I’m not giving up, and I definitely agree with you on all of the above. I think there are things worthy of further investigation. Unfortunately, Hepworth isn’t taking new patients. Hackman will require a CT with measurements, so a new CT will need to happen. I’m considering trying to see Dr. Covello next.
Just so you know CT without contrast will show bones but won’t show vascular system very well. So while measurements can be obtained from the CT without contrast, it won’t show if it is compressing or or touching Vascular systems.
One option you can try is to send your Current CT scan to secondary radiologist to take the measurements if that is what these ENT doctors are after. I am sure it will be cheaper than a whole new CT.
I think what is more important than measurements is if it is touching or compressing your vascular systems and nerves.
Is Dr. Covello the neurosurgeon? Dr. Hepworth is supposedly accepting new patients starting sometime this month. It would be worth it to call his ofc to check if you haven’t. Whomever you do talk to next, make sure they also do hyoid work & not just styloid. Since it appears you potentially have both ES & HBS, it would be nice to get both taken care of at once. It will be a tougher recovery but at least it won’t have to recover twice.
I’m so sorry that you felt you were dismissed- obvs not being there I can’t say but at least he’s willing to consider the hyoid bone surgery. The others have given you could advice, can’t add any more to that but can send you a hug