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.