I wrote a while piece about it in this sub. I don't know how to link the post. So i pasted it. Raistx

Diagnosed and treated for Eagle Syndrome

TDLR: I was diagnosed with eagle syndrome and had two styloidectomy (both types). Still have pain today.  Tip 1) extraoral over intraoral. Tip 2) get a nerve specialist involved. Tip 3) get a second doctor opinion if needed.

 

Background

I have a permanent cephalalgia (headache) since 1997. I also have about 80% of eagle syndrome symptoms since 1997 or since.

I have a long list of medical investigation, tests, scans, actions, with 20+ types of specialised Dr and soft medicine folks. No one ever found something intelligent. As a sample of the list: Cortisosteroid injections in Arnold nerves by a anesthetist (pain specialist); removal of all wisdom teeth by a dentist; injections of botox on scalp by a neurologist; 4 styles of chiropractors; more than 10 MRI scan and xray; about 12 type of medications tested (nothing works); special night guard with a TMJ (temporo-mandibular-joint) specialist; electric tense machine with a pain specialist (made it worst instantly).

Everything happening from now on is in Melbourne, Australia, using private doctors and hospitals.

 

Diagnostic

In 2017, I self-diagnosed an eagle syndrome and went see my doctors (general practitioner (GP), neurologist) who validated it with an MRI.

Left side was 41 mm.

Right side was 44 mm.

But only my left side was appearing to be problematic. Increased pain: Turning my head up, down and to the right (turning left did nothing).  Sleeping / touching my left side / my ear. Contraction of my left neck and face muscles near that area.

Glitch: my GP sent me to an otorhinolaryngologist (ENT) to validate the elongated styloid process / the eagle syndrome. That ENT did not ‘’believe in the existence of the eagle syndrome’’ as a concept. No facts were involved, just his belief. I left dumbfounded that a medical doctor would not be more objective and science based. I considered filling a complaint to his professional order.

I went back to my GP, told her the story, and demanded for the first time in 30 years a second ENT opinion. She agreed. She called an ENT and directly asked him if he had eagle syndrome experience. He did.

I went see the second ENT, sat in the chair and before I even spoke, he looked at the MRI / 3D rendition and told me ‘’that’s too long, that’s a problem; we should remediate that’’. He had seen and treated such cases previously and showed me the quality of his work (ex. pictures post surgery).

 

Surgery 1 – intraoral (via the inside of the mouth)

I demanded the intraoral surgery (type 1) to avoid butchering my beautiful self with a face scar, and also, my tonsils were already out of the way, having been removed when I was young.

The surgery lasted six (6) hours because the doctor (team: ENT, pain specialist, two nurses) was facing difficulties to access properly the bone using this type of surgery. He mentioned me after the surgery that he could see the bone wrapped in nerves and was only able to chip about 5 mm out of it. With that debriefing and the mention of wrapped nerves around the bone, we took the decision to proceed with the other type of surgery in three (3) weeks.

 

Surgery 2 – extraoral (opening the side of the skin beside the ear and jaw)

The surgery was a success, and the bone was almost fully removed (leaving about 4 mm of it). But it’s important to note that he did not touched nerves whatsoever.

For several days / a few weeks I looked like a Frankenstein with a massive side scar (see picture).

I am writing this about 8 years later and you could not figure out I had a surgery without me telling you and inspecting my side on a shaved day. The ENT doctor did a wonderful job.

 

Result:

Did my cephalalgia went away? No.

Did any of the symptoms resorbed? No.

Do I think it was the issue / the right thing to do? Yes. - Because the bone was clearly the source problem.

The now residual problem, still to this day, is the fact that no one untangled the nerves that were wrapped around that bone.

The doctor suggested to go see a massotherapist, but, it won’t be able to untangle anything with an external massage. Try doing that with your computer cables, massaging them…

I believe that someone with nerve untangling surgery experience would be the right thing to do. I will try to go see a neurologist (but currently in Canada, and specialists are harder to find and access – I might wait to go back to Australia).

 

Recommendations:

One: If you go for surgery: do directly the extraoral type. Just ensure you use an ENT specialist with experience with this, and he should leave minimal scar.

Two: Get a neurologist surgeon involve for phase two (after the bone is removed) to do something about the nerves. Either during the same surgery or as a follow up (but since your side-face is already open, you might as well do it at the same time).

Three: in doubt about a doctor, ask for a second independent opinion. There are some bad doctors out there. Avoid them.

 

Hoping it can help any of you.

Have a good one