Pelican doctors - Eagle syndrome?

[Nevergrowup]

Since I'm always blown away by the knowledge in this group, and because my wife asked me to get your opinion as I'm always telling her about informative threads I've read here - do any of you have any knowledge about Eagle (or Eagle's) syndrome?

My wife has suffered from severe headaches, choking sensation, numbness in the face and other symptoms that have always been explained by doctors as migraine, fibromyalgia or simply hypochondria. She has always had very complex health issues (endometriosis, back pains and depression being some of them) so I guess some symptoms or pains could easily be dismissed as being just another issue - real or imagined.

However, an examination at the local hospital (this is in Norway, by the way) revealed by an x-ray, I think, that she has Eagle syndrome. Which is bones growing under the jaw, potentially pressing on nerves and blood vessels, and COULD explain some or a lot of the issues she's experiencing.

The local doctors didn't dare to do anything, as they didn't have the experience or skills. Fair enough. So she was referred to one of the biggest hospitals in Oslo, who also didn't know what to do. And a third hospital claimed to have expertise, but it was largely blown off by the elderly doctor who had done these kind of surgeries but meant that it had nothing to do with her headaches. Contrary to the research we had to do ourselves. But she did get an MRI. And here are the images:





The bones are about 6 cm long, or just over 2 inches for you non metrics. It almost looks like she's growing pedipalps or turning into a Predator!

Jokes aside, we have found a doctor at a hospital some 250 miles away, who has done these operations with success. So her RGP has forwarded her file to him, and we're awaiting a response these days.

Has any of you had any experience or knowledge about this syndrome, and the procedure to remove them?

[billybek]

Wow that is really interesting.
No knowledge of this but will follow your thread.
Hope she has good luck with the treatment.

[Sooner or later]

Damn

[KFC911]

Somber read....Take It Easy.

Best to you both....that's all I have to offer.

Good luck!

[sc_rufctr]

I've never seen or heard of anything like this. It must be rare.

But I hope this helps. They look relatively easy to remove. (compared to other spine issues)

Hoping for the best or your wife.

[Evans, Marv]

I wonder if the cause(s) of this is some kind of vestigial growth. Odd you couldn't get more info from some experts in Oslo. I'll be watching for replies out of curiosity. Wishing the best for your wife.

[GeorgeK]

Lots of things can attach to these things, muscles mainly.
Lots of precious nerve and vascular structures nearby, making getting to them quite a feat already.
Make sure the surgeon has done several before, and with good results.

That's a CT btw, not an MR.

[Nevergrowup]

Ah, CT. OK, thanks! And thanks for the support, guys. It’s quite rare, according to Wikipedia only 0.16 percent of the general population has this. I hope we get a quick response from the specialist at St. Olavs Hospital in Trondheim.

[Tobra]

WTF, styloid process from hell. Lot of stuff in your neck for that to press on too.

Styloid process is normal to have there, but normally is small

[jwasbury]

I'm not a doctor, but have found good clinical study medical data on the NIH website in the past. The study linked below shows very promising results for surgical correction of this condition. Good luck to you and your wife.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2637062/

[Tobra]

Perhaps helpful to see a more normal sized temporal styloid process. As you can imagine, a lot of vital structures around, but it might be a matter of cutting that bone and sliding it out. Pretty sure that is attached right near where the carotid artery enters the skull. It is very interesting, almost appears to be articulated, like a finger. I wonder how it is attached to the muscles in the neck. There is normally a ligament that connects it to the hyoid bone in the neck. It is sort of like a thin horseshoe shape, with the open part facing the back. Only bone that does not connect to or articulate with another bone. The long styloid process is pressing on things that don't want pressed on, like nerves and vascular structures, probably pulling on the hyoid bone too. When she turns her head, or looks up and down, it is moving those bones around, like a cocktail stirrer in a big glass, but there are two stirrers and the glass is your wife's neck.

You would be depressed too if you had endometriosis, that is some scheisse I am glad I am immune to as a dude. Good luck with the wife, she sounds pretty tough, or she would have already quit.

[Nevergrowup]

Thanks, Tobra. I’ll keep you all informed when we get any news.

[Nevergrowup]

A small update. We were contacted by the hospital in Trondheim and will fly up for a consultation December 13th, and operation(s) will follow hopefully soon after Christmas.

We will fly up Friday morning (one hour flight) taking our 5yo who has never been on a plane before, and go out and be tourists that evening and night after the consultation. Sleep at a hotel and fly home on Saturday.

How we’ll sort the logistics for the operation(s) will be decided later. First things first.

[john70t]

It sounds like such a rare condition that probably only a few specialists work on it.

Here are a few medical journal articles:
https://www.pulsus.com/scholarly-articles/elongated-styloid-process--report-of-two-rare-cases.html
Although 4% of the population is thought to have an elongated styloid, only 4–10% of this group is symptomatic

I hope it is able to be fixed.

[Nevergrowup]

It’s been a while, so It’s time for an update. We went to Trondheim in December, but did not get to talk to the doctor we wanted, only his younger colleague. He was frankly a little dismissive about her symptoms and wanted her to apply for a pain study he had ‘heard of’. Short version - you get an injection to a pain center at the underside of the brain.

We were not completely happy about the consultation, and decided to pursue an operation as we know the bones are there, but not if the study will be effective and how long it will take. And a quick google about the study showed that the doctor we talked to was in fact his OWN study, so clearly he had an agenda.

But, I wrote an email to the doctor we actually wanted to see, and told about my concerns as a ‘worried relative’. And he replied the very next day and said that ‘of course she can get an operation’.

Yay! But he was not specific about a time frame, and in Norway you can get stuck waiting for a procedure for a long time, even for severe cases. So I phoned them twice to check status and vocalize my concerns, as my wife is completely incapacitated these days due to pain, feeling of suffocation etc. And two days after my last call we finally got a letter scheduling surgery March 25th! Nagging pays off!

So now we just cross our fingers that the damn Corona situation will not fill the hospital and postpone the surgery. Or that none of us gets infected before then. We will not travel by plane this time though, for a number of reasons. It’ll be a road trip.

[Sooner or later]

Good news. Hope it works out.

[Bugsinrugs]

Wishing your wife a successful outcome.

[MBAtarga]

Sending positive vibes your way!

[masraum]

Great news! Progress is good!