The head and neck surgeon said my symptoms (stabbing ear pain, sensation of something stuck in throat, and pain behind mandible) are related to Eagle’s syndrome. The MRA showed the internal jugular was being compressed by an elongated styloid as well as the transverse process at C-1. The 3-D scan revealed the left styloid measures between 3.5 to 4 cm.
The head and neck surgeon ordered a hearing test and the audiologist asked if I ever had an injury to my left ear as one part of the test was abnormal.
The neurosurgeon believes I have either glossopharyngeal neuralgia or nervus intermedius neuralgia. He believes I could benefit from a micro vascular decompression. He reviewed a CT from 2 years ago and said I had an elongated styloid at that time. The neurosurgeon also noted the gag reflex was absent in the left side.
Somewhat frustrated that the opinions vary. However, the head and neck surgeon felt the external approach may bring some relief. I am set for surgery on June 13.
Hi Alexandra,
There is a Ben’s Friends site ‘Living With TN’, which you might find interesting to look at- there is a lot of info about neuralgia symptoms and MVD surgery, so you know what is involved with that. Here’s the link: http://www.livingwithtn.org/ Ben’s Friends also has a GPN site: http://www.livingwithgpn.org/ I know of one member here who’s doctor wanted to do MVD first, and that made no difference to her symptoms. She went on to have a styloid removed as she felt that that was causing the problem to the TN nerve, not sure how that went. Both GPN and TN are known to be caused by ES, so it seems like a good call to have the styloid removed first.
I have decreased hearing on the side I had the worst symptoms, I know of another member Isaiah40:31 who has too; obviously I don’t know what exactly they found with yours, and whether that’s another unusual symptoms of ES…
Anyway, it’s great that they’re prepared to operate, and not too long to wait! Hope that all goes well, will be thinking of you, and keep us posted!
Since a styloidectomy appears to be the least traumatic of the surgeries, it makes sense to try that first. Even if I receive some pain relief, I would be happy. I would be thrilled to eliminate the crushing sensation in the throat.
The immittance audiometry was abnormal on the left side. I don’t yet know the significance of that yet and am researching a possible connection to ES (if any).
Have you had surgery- did all go well, and are symptoms easing? Sorry, normally I try to keep up with members and would’ve messaged to see how you were getting on, but had my surgery and wasn’t on for a bit…
I hope your doc can keep in mind that things such and TN can be a Symptom rather than a primary cause. Also the styloid, neck muscles, vasculature, and hyoid are not stationary like the pictures in your results.
Subtle things in lifestyle changes such as spending more time at the computer, new activities doing a job, changes in posture, changes in you back legs or hips, All Sorts of stuff can cause an asymptomatic anatomical variant to become symptomatic.
A few questions tho, why were you being imaged? If this area wasn’t already creating problems 2 years ago the doc wouldn’t have a comparative picture.
Also, do you know what they mean by “decompression”? Are they referring to stenting?
I hope you find some answers soon, especially with it rubbing you jugular, you’ve gotta feel pretty rough.
TJ here, just q quick suggestion. RUN AS FAR AND AS FAST AS YOU CAN from the NS. MVD rarely is effective long term for folks who have actual nerve compression because of the surgery itself creating scar tissue. It is a last resort surgery for TN-1., as it at the best creates WORSE problems at least 20% of the time. I say this as much for our membership as anyone as it appears you are on the conservative course and smelled a rat with the NS.
You don’t have TN-1. At least not from ANY of the studies thus far. The MRA didn’t study any of the vessels involved (unless I missed something or you didn’t post everything. If was to guess you have a NS who needs 100grand in hurry for something. NO ethical doc leads with option without trying just about everything else first. Putting a teflon pad in your brain sure won’t help your styloids. Sounds like your ENT has it. May take some time to work all through with him, but will be worth it. Hopefully by now you had a successful surgery and are back to living life…
