Just had first consult, questions for anyone

I went to an oral surgeon on 5/4 because my jaw was out of alignment and constantly chattering following excruciating ear pain. this happened roughly four weeks after an auto accident where I had a concussion and whiplash. the oral surgeon did a panoramic xray that did not show jaw abnormalities, but did show a calcified s-l. it was the oral surgeons belief the calcified s-l was hitting a muscle causing a motor response with my jaw. found this group after that appointment and found Dr Hackman from the list as the closest Dr to me. got an appointment with him 6/22. I went to the appointment yesterday and tried to explain everything going on to Dr Hackman, but he told me that he believed all of this was wreck related and that my eagles was asymptomatic. I tried to get him to understand that I didn’t have all of these symptoms pre wreck, but I did have right side ear neck and shoulder pain for years that I never went to the Dr for because I just could never afford it really. it was just an. uncomfortable part of life. it’s progressed since the accident to basically every thing this person says in post 8:

i feel all of this now and am utterly miserable every day.

Anyway, he sent me for a CT scan that came back with no other abnormal findings than 4.2 cm styloid on the right side, abutting the internal carotid artery.

so, my question: do all eagles cases abut the arteries? and has anyone else had a problem with jaw chattering associated with their eagles?
Dr Hackman ask to see me back in 3-4 weeks, but did not have an available appointment for seven weeks and I feel like I need to be more forceful for scheduling surgery for close to that appointment now since we have confirmation it’s abutting the carotid artery and it took me six weeks to see him the first time and seven weeks for the second appointment.

Hi tp12,

Muscle tremors can be caused by nerve damage. It seems you had ES prior to your car accident, but getting a whiplash injury may have caused the position of your styloids to shift a bit & begin compressing nerves & vascular tissues that weren’t previously bothered.

I’m glad you persisted w/ Dr. Hackman & made a case for further investigation which turned up the carotid compression & justified your request for surgery. I’m sorry he’s delayed that by requiring a return visit first.

Not everyone who has ES has vascular compression. It all depends on the angle the styloid is growing, its length, & to some degree, the thickness of the styloid. We are each uniquely “designed” so every case of ES can have some symptoms that vary from those of others.

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I hope that you’re able to see him earlier than 7 weeks- could you ask to be put on a cancellation list? Some members have had luck with that.
I was diagnosed with ES & for over a year didn’t consider surgery, until I developed vascular symptoms, & that made my mind up to have it, so I can understand that you’re concerned seeing that on your scan.
Best wishes.

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Dr Hackman has let me know that the CT does confirm a length and angle that may result in symptom approval after removal, so thankful for that. Hoping this will help secure me a referral to his scheduler to at least start that process before 8/11? I’ve ask for that or any open earlier appointments, we’ll see. thank you for the replies!

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That’s good news! I hope you can get an earlier appt!

HOORAY for acknowledgement! So glad Dr. Hackman reviewed your scans & changed his tune. I, too, hope there’s a cancellation so you can get in for surgery sooner.

I’m not sure how I typed approval instead of improvement up there but you guys figured it out.

his nurse let me know that he was on leave in July and I wasn’t going to get in any earlier and I’m not entirely sure why they won’t set a surgery after my 8/11 appointment so it’s on the books, but they won’t do that either. I don’t really feel heard at all, but at least the CT scan confirmed it and is getting me to surgery. I do think the wreck and whiplash shifted everything in there because the right side pain I’ve had for years is completely gone right now, it’s moved to more center/left and up and down. i went to the Dr at our work clinic when I realized I’m probably 14 more weeks out from any chance of change and that this probably was in fact keeping the whiplash angry. she was kind enough to prescribe me a steroid that has improved my quality of life more in the last two days than I’ve felt in months. I am hoping the effects linger long enough to carry me for a bit. a lot of the pressure and pain in my head has subsided and I can actually lay my head on a pillow because the pain has decreased so much. thankful!

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Great that the steroids are helping, hope it does last; some people have had steroid/ lidocaine injections into the styloid area which has helped, that might be something which you could consider if a local ENT could do this while you wait? It can be done under ultrasound…

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Dr Hackman referred me to his scheduler. scheduled for 8/13! so excited to have a day!!

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So exciting to have a date. I’ll put it on my calendar & will pray for you especially that day. :sparkling_heart:

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Great news! :smiley:

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hope this works? I got the 3d slicer to work and I think they’re interesting to see, so sharing

Well done! Looks long, & the curve looks interesting, it looks like it’s going inwards from that angle, unusual! It looks likes there’s compression between it & the C1 process.

That is one gnarly looking styloid, @tp12! It’s both thick & oddly curved. No wonder your symptoms are so bad. It’s great you’ve started the countdown to your surgery though! I hope the days seem to pass quickly till you get there. :hugs:

the majority of my pain originates from where the c1 is and radiates out, so that would make so much sense.

tp12, glad you have an appt on the books. Its too bad they wont schedule surgery now especially since he has seen your scans and confirmed you may be a good candidate for surgery. Some docs practices just run that way. I usually like to meet the doc in person before I agree to let them cut on me. :sweat_smile:
I found steroids to take the edge off my first pain flair as well as it was excruiating. I now get regular injections/nerve blocks by a neurologist I was lucky to find. Some pain centers can do them as well. 8/11 will come quick. I hope you can keep this at bay until then.
Did they say how long out surgeries are being scheduled? ie: # of week after appt on the 11th? I know, with my doc, I was able to schedule surgery within 3 weeks. There is light at the end of the tunnel. Hang in there.

I did have an appt with him in person 6/22 (it took six weeks to get an initial appt) but he thought that since so much of my pain radiates from the center back of my head that my eagles was possibly asymptomatic. I went to him only with panoramic xrays from the oral surgeon (that I also waited six weeks to see!). So we needed a CT - which I expected/hoped was going to happen after the first appointment. I was just upset in the initial post because he ask to see me back in 3 weeks but they scheduled me 7 weeks out for my 2nd appointment bc that was his first available appointment and if they they had waited to schedule surgery until after the second appointment - I was looking at 13-14 weeks for surgery - so I was in painful defeat in the first posts of this thread.

thankfully, they did go ahead and put me on his surgery schedule for 8/13, so it’ll happen right after our 2nd appointment

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wait snapple, have you had surgery yet?
I just read your bio. I also had a wreck and whiplash and this started as excruciating exploding pain in my ear a few weeks after the wreck. we’re assuming the styloid shifted after the wreck because I had a constant mild shoulder/neck pain for years that has completely disappeared since the wreck. you’re still having to get the shots even after surgery?
:frowning:

Hi tp,
So glad you got your surgery scheduled!!!
My whiplash was decades ago and I have had decades of neck/skull pain. I also have ehlers danlos-hypermobility and had years of neck instability. I think the whiplash (w EDS) very young in life set me up for years of problems.
I had 1st Eagles surgery in April 2020 and the 2nd in Dec 2020. I do still get injections for my jaw / TMJ. I have osteoarthritis in my jaw.
Its been hard to tell what pain in my neck is from Eagles and what has been from TMJ. When it all hurts and the muscles tied together, I think it plays off each other. My plan was take care of Eagles, then move on to treating the jaw. The day I flew out for Eagles #2, I saw TMJ doc and found out my jaw out of alignment as well as bone loss. I just received the appliance about 1 month ago.
any of us here have TMJ and Eagles.
Unfortunately after 1 year of injections - a combo of steroids, nerve blcoks and botox (for jaw) and 2 surgeries, I had some major crown work done. Then more pain started to developed. I had a failed attempt at a root canal where they couldnt get me numb - it was torture. I then moved on to have the tooth extracted/ bone graft and 3 days later back in oral surgeons office in extreme pain. he refused to give me muscle relaxers and would only give me pain meds.
Well to make a long story short, I saw my dentist twice, my TMJ doc for injections and then to the ER for ear pain and dizziness - even my eagles surgery site was hurting. I told me dentist, Id rather have my neck cut open ie: Eagles surgery. Eagles surgery really was a breeze.
Well it turns out the oral surgery triggered shingles in my trigeminal nerve. This is rare. And I even had a shingles vaccination last fall! Well I am over the worst of it but it has been truly horrific. Anytime you have nerve pain in the neck, skull or jaw in my opinion is close to unbearable.

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Sorry for going off on my drama. The point is the steroid shots saved me. They are not exactly fun to get but it really has helped me multiple times.
My first major nerve pain flair in 2015 from Eagles started in my neck and shot up to my ear - excruciating like what you describe. I was given then oral dexamethazone then (after several rounds of docs and MRI) which really knocked the pain down quickly.
The my pain shifted back and forth from one side of neck to the other from 2015-2020. During this time, I got many neck adjustments from a chiropractor, lots of massage, accupuncture and cranio-sacral work. I then got desperate and started the injections.