Confirmed ES with Dr. Omlie today

Dr. Omlie officially diagnosed me with ES today. I am very pleased with his demeanor. There was nothing clinical about him and he came into the exam room with photos to show me exactly what he does and the anatomy of the area. Very compassionate, very realistic yet very professional. His assistant nurse was equally compassionate and very up front. Dr. Omlie stated he’s done about a dozen surgeries recently and has done thousands of carotid artery surgeries in this area of the neck so is very comfortable and experienced working in this sensitive area.

He is suggesting a left styloidectomy, removal of some mild calcification that he believes he can see on CT and division of the digastric muscle - division, he said just means he makes an incision down the middle of it but I’m a bit vague on this so please don’t quote me. Also, stating my symptoms aren’t typical to what he sees and because my pain is very local to one side, not having changed in the last 18 months and has not been causing any headaches, dizziness or fogginess, he is NOT currently recommending I consider removing the right…UNLESS it becomes symptomatic (I know this is possible - but we’re both hopeful it won’t be).

He used an example of a stroke patient he treated who had elongated styloids. From the special imaging he does in vascular cases, it was the shorter styloid causing compression. The longer side he said was quite a bit longer and was left in never to cause any issues that he’s currently aware of.

As described by Dr. Omlie - he will use a nasal tube for intubation to keep the neck area free since the head must be turned. He and the oral surgeon (his nephew) will work together. His nephew will sublux (not dislocate) my jaw to allow more room to work. This will mean he will pull my jaw forward with wire that I believe he said would be secured around my teeth (?)

He traced a line with his finger from just behind my ear at the base of the skull to just around the curve of my jaw to indicate where the incision will be. He said it will be about a 2” incision and about an hour and a half surgery. He explained that all nerves are posterior to the styloid except the facial nerve which is anterior. He said they’ve learned a great deal on working around the facial nerve and now use a “spring” tool that will minimally impact/disrupt this nerve thus I expect and hope for minimal impact on nerve irritation.

In the end my biggest question for Dr. Omlie was this: “What is your comfort level that this is the issue because I’ve already been poorly diagnosed and had a surgery that did not rectify the issue. This is of HUGE concern for me”
His response was this: Based on CT, my symptoms and the plethora of avenues I’ve already gone, he feels this is the right diagnosis and if it’s hurting, remove it…it’s not needed” While surgery is never a perfect system, I’m going to remain cautiously optimistic.

I expect a call in the next weekish from the schedulers after they call the Oral Surgeons office to verify schedules and in-network coverage, which they are NOT in network for me (Dr. Omlie IS in network, however) - the nurse advised me of this being a strong possibility. She said that it can be expected to pay about $4k out of pocket for the Oral Surgeon. I do have out-of-network coverage but I am also going to call my insurance to inquire on an out of network waiver given the rarity of this and the very few specialists who are educated and experienced to diagnose and treat ES. This will likely require a referral application from Dr. Omlie - it’s worth a try.

The downer of all this is that currently, Fairview Ridges/UofM is having scheduling challenges due to bed availability/CV19/staffing. I was advised that they hope to have me scheduled within the next month or two (and this sounded optimistic). I will be sure to let them know that I can drop everything on a dime if there’s a cancellation.

I had my mom with me for another pair of ears and when all was said and done, I felt such relief, cried a little and feel that there just might be a path to an end of this. Although, there is still this pessimistic side of me that is fearful that symptoms won’t resolve. I need to keep reminding myself that Dr. Omlie is experienced, he was looking at a 14 month old CT (it’s possible things could be worse now) and given symptoms and all I’ve tried, there’s very little if anything else I can try. So there we have it, folks.


That is an amazing story, Tjmhawk01! Thank you for sharing the details. I’m so glad you’re ES diagnosis has been confirmed & there’s a positive path forward. We’re here for you while you await your surgery date. I also hope all goes well w/ the insurance waiver.


Isaiah_40_31 - thank you. Regardless of how this ends, I’m forever grateful for this forum. It can be a scary, lonely path of discovery.

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So glad that Dr Omelie confirmed ES, is willing to help you & feels that surgery should help, very good news! Thank you for the detailed surgery info & feedback about Dr Omelie which I’m sure will be helpful to others.
I hope that they can get you in soon; there’s lots of info if you search for what to expect after surgery if you’ve not already read it. Let us know when you get a date!

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So here’s something interesting that maybe either of you might be able to shed some light on for me. I reviewed Dr. Omlie’s notes and in his notes he mentions this regarding thyroidectomy.

“would recommend that she undergo a left thyroidectomy with excision/revision of the adjacent ligaments and muscles and very likely removal of the posterior belly of the digastric muscle to allow safe visualization completion of the procedure”

He mentioned nothing at my appointmeant with regards to my thyroid. I do have this question in to him but perhaps I can gain some form of clarity here with what this means as it’s rather concerning. And as I mentioned, this was never discussed in my appointment with him and I have yet to read any similar comments from others who’ve had this surgery.

Not heard of that before, I guess that maybe your stylo-hyoid ligament is calcified from the hyoid bone up, so it’s a lower incision than would be done normally? Definitely worth clarifying before surgery…

I wonder if this may have been a typo and perhaps it should have read to “undergo a left STYLOIDECTOMY…” Id hope this is the case!

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I like the way you think Tjmhawk! That would be a significant typo but could happen!

I guess my thought about the digastric is that he speculating removal of the posterior belly might be necessary, but he won’t know till he gets in there & sees the true situation.

I just got this off Google (you may have already looked it up) - *"The digastric muscle functions during swallowing, chewing, and speech. The anterior belly of the digastric is one of the three suprahyoid muscles which stabilizes the hyoid during swallowing, an action critical in protecting the airway while eating.
The tendon that connects the anterior and posterior bellies of the digastric muscle inserts on the hyoid bone, which is a bone located in the front, middle part of the neck. The main actions performed by the digastric muscle are to lower the mandible and elevate the hyoid bone during a swallow .

It sounds like the anterior belly of the digastric is most instrumental in stabilizing the hyoid so if the ligament which is connected to the hyoid bone stays intact, removal of the posterior belly may have minimal impact. Regardless, I would definitely question why he might need to remove it as that sounds significant. I am aware of situations where people have had hyoid trouble after neck/throat surgeries, & the result has been permanent swallowing trouble. Make sure whatever his plans are that you won’t suffer the same results.

I haven’t heard of this scenario w/ others’ surgeries, but we are each built uniquely so the internal landscape is a bit different in each patient & sometimes unexpected things need to be done for surgery to be successful.

I’ll let you all know what I find out. Seriously have no idea where the “thyroidectomy” comes in and he did discuss “dividing” the digastric but this is where my notes are fuzzy. I’ve requested clarity from him and will report back just for basic knowledge :slightly_smiling_face:


Well, indeed the “thyroidectomy” was a miscode in my online notes. Whew! We’re back on track. And I must say, this staff at Dr. Omlie’s office has been so wonderful to communicate with! Just stellar all around and willing to help me in any way they’re able. I truly feel like we are a team working together to get the best possible results

I met with Dr. Ondrey today, the other ES doctor mentioned on this site. I wasn’t sure what to expect but I was pleasantly surprised. He was very friendly and a pleasure to talk to. He had a U of M student with in the exam room which thrilled me - the more young physicians who learn about this, the better! He is also quite familiar with this site…again, a good thing.

Out of the gate, Dr. Ondry suggested that ES is a reasonable diagnosis. He said he does intra-oral and transcervical surgeries. We really didn’t discuss intra-oral so I speculate his thought is that transcervical was the best route for me. He did say that when he does styloidectomies he takes the styloid process back to “normal” length at about 2.5cm, not to the skull base. This is because (and I paraphrase), he’s not a vascular surgeon and despite having much experience with this, he doesn’t feel as experienced as a vascular surgeon if he’s required to really get deep into that area. I respect this answer. He knows Dr. Omlie as well and speaks kindly of him.

He mentioned he was, lets say enthused to talk with me because my symptoms are more classic. He said sometimes he has a hard time with some vascular symptoms where he wants to explore other options before diving into an invasive surgery. This too, I respect.

He did try to palpate in my tonsil area but to no avail of feeling the styloid or aggravating any symptoms. Same results with the scope. He said he tried to get an estimate on measurements from my last CT and he was finding about mid-3cm’s for both - longer than my own at home measurements and more than what I was able to get from radiology. This prompted him to refer me for a maxillofacial 3D CT to get not only a current scan but a better idea of what length is at this point since my CT is about 15 mom old. I felt he was on my team in that he wants to give me as much diagnosing information as he can so I can make the best decisions. I also found it REALLY interesting that he has nearly 50+ suspected ES patients per year! Despite being suspected, that’s far more than I would’ve ever imagined!

Bottom line, I feel like I’m getting all the right information and that indeed this is without a reasonable doubt where my pain is coming from. This brings loads of comfort (for now). I intend to move forward with Dr. Omlie with surgery and can’t wait to get scheduled! I hope that scheduling call comes soon and the wait is minimal. :pray:


I’m so glad your appt. w/ Dr. Ondrey went so well & especially that he’s willing to be a part of your team even though he’s not doing your surgery. It’s great that you got some new information today & that a resident was able to be in on the ES discussion.

Please let us know when you get that surgery date!

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That’s so good to hear about both doctors! They both sound really helpful…so pleased that you feel confident with the diagnosis to go ahead with Dr Omlie, hopefully with not too long a wait!