I am new to the group. Finally after many hoops with the insurance I have found a head and neck ENT surgeon to operate on me with my neurosurgeon. My appointment is not until Oct 15th and from there I can schedule my surgery which I hope is not further then a month away. Until now, I have been just barely getting by with choking and swallowing. I have completely changed my diet. But I no longer can lay on my back or put my neck up because I feel I am choking. But now i barely can get any texture down without choking. My eyes are completely bloodshot from all the coughing. Any tips- and did this happen to you.
Another thing- I keep reading comments about tinnitus. However, although I have it, mine seems to be so different. I can be randomly sitting there and out of nowhere a very large high pitch sound happens. Then my hearing becomes muffled for a while after.
On days where swallowing is really bad, it seems the tinnitus is prevalent. Just want to see if anyone has experienced this.
Glad to hear you have a surgery consult coming up!
Swallowing difficulties is very common among those with ES. Typically has to do with irritation/compression of the hypoglossal and/or glossopharyngeal nerve.
Tinnitus is also very common among those with ES - both the pulsatile (whooshing) tinnitus, and the typical (high pitch ringing) tinnitus that you are describing. The muffled hearing (and the tinnitus) is likely due to IJV compression between your styloid(s) and C1. I can help you assess for compression if you have your CT imaging handy (and if it included contrast)
Hi & welcome!
Trouble swallowing is one of the most common symptoms of ES, although not always as severe as yours sounds! Hopefully others who have had this symptom will chip in, I didn’t have that…
There’s lots of info about surgery, what to expect, questions to ask your doctor especially if they haven’t done many ES surgeries, suggestions of what to get ready beforehand etc, here’s a link: ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Tinnitus does seem to be common with ES, but it can be caused for other reasons, so not necessarily caused by the styloids.
@Gaby - Choking on food was my first symptom of ES. I had to have the Heimlich Maneuver done a couple of times which saved my life. I wouldn’t be here now to type this now if not for my son & a friend who were able to act quickly when I started choking. I had an upper GI thinking something was wrong w/ my esophagus, but it was fine. It was a couple years later that I began having other ES related symptoms & could feel my styloid under the left side of my jaw. I thought it was an inflamed salivary gland. When I poked it, it caused pain in the front of my neck (odd!). Though I didn’t have any further scary food choking incidents, I did choke frequently when taking a drink. I also had the problem of not being able to sleep on my back because it would feel like my throat was closing up. I still have that problem to some extent but have learned to situate my pillow so it puts my neck in extension when I’m on my back & then I can sleep that way without a problem.
I agree that your tinnitus/muffled hearing symptom could be related to possible IJV compression. If that shows up in your imaging, you’ll want to consider one of the few doctors on our Doctors List who do IJV decompression alongside your styloidectomy as it’s a more specialized surgery than a styloidectomy alone. As @TML suggested, letting us or TML look at your imaging, we can help you have a better idea of what’s going on. We’re not doctors but are quite experienced at recognizing things radiologists & doctors miss or dismiss as insignificant which have significance in cases of ES.
If you want to convert your imaging to 3D you can use radiantviewer.com (PCs) or Bee Dicom Viewer App (Macs). 3D imaging can also help you better see what’s going on in your neck.
Yes I have this with esophageal dysphagia and now having trouble with swallowing bread and some liquids. I feel a lump in my throat. I also have ear pain when I swallow.