Update on my consultation with Dr. Schindler.
I had a zoom meeting with Dr. Schindler. He asked for my story.
I told him the slightly abridged version - that I started having throat pain that felt isolated to the right side near the roof of my mouth. Looked for help at my PCP in 2018. Tried controlling acid reflux and allergies but the symptoms persisted. Made life changes but the systems persisted. Was refered to an ENT. They said everything looked normal.
After a while I ended up finding a mass near the front of my right tonsil that felt too big and solid to be anything I have ever heard of while I was feeling around my tonsils to see if it was tonsil stones. Heard about Eagles Syndrome but wasn’t sure if it was the cause of my symptoms but stopped seeking medical help during the pandemic.
Jump to this year, the feeling of something stuck in my throat was driving me insane. I spent hours googling what could be wrong with me. I found another site about ES that described my feelings to a ‘t.’ I went to my dentist and asked the dental hygeinist about it without any mention of styloids or ES. She told me it was normal and from clenching my jaw. So then i went back to my PCP about 5 years after the first visit. She referred me to an ENT in town and I also asked for a referal to Dr. Schindler which landed me in the office with Dr. March. I believe everything that occured during that visit is listed above in a previous post.
So Dr. Schindler started off by saying that ES is hard to diagnose because there isn’t any one indicator that it is the problem. Rather, other problems should be ruled out until ES is basically the only explanation. He also said that surgery wouldnt necessarily help as it could be some other problem, and that surgery comes with risks.
He asked if I had any other surgeries before. Just a wisdom tooth removal and some minor dermatological “surgeries” to remove a cyst that was mainly just cosmetic.
He said that I have the right symptoms. And that from the CT scan the right styloid is definitely elongated. He said he measured the left one looks of normal length. So he had a pretty good feeling I was likely having symptoms due to the styloid.
But… he told me that he would like to verify and make sure by feeling around for the styloid that can be felt in my mouth. He said that usually in his experience his patients that can feel it in the side of their throat tend to “jump out of their seat” upon him making contact with it. And if that is the case for me that he feels basically 100% certain that the surgery would help me. But that based on what I have told him that he thinks I would likely be a good candidate for surgery.
I told him that Dr. March already felt around and confirmed it but that if he needed to himself that I understood. I also told him I tongue the thing quite often and it isnt so much of a shock so dont expect me to jump out of my seat in pain and its more of a dull/itchy pain feeling unless you rub around on it for a while (i havent tried pushing hard, seems kinda risky with a talon shaped object.)
He kinda winced as he realised and said that he somehow missed that the other Dr. had already confirmed it. He apologized and said that he saw it in the notes after that and also that she wants to be a part of the process to learn more, which he thinks is a great idea if I am on board. He said he has a lot of faith in her and that if the says she felt it then thats good enough for him. I told Schindler that I would love to help others learn from my experience and she would be more than welcome to join.
Dr. Schindler went on to say that he feels very strongly that an transoral/intraoral approach would be a better decision. He said that they wouldn’t have to remove my tonsils because the styloid (im paraphrasing) kind of goes past it towards the cheek. He said it would be a very simple process to make an incision, run a tool he called a curette (?) up the styloid as far back as he can get it, and then break the bone at that point and remove a significant portion of it. He chuckled a bit and said that pulling the bone out is kind of fun after breaking it off.
He went on to say the transcranial method is much riskier as more tissue has to be cut through and that there is a lot of very high value real estate in that area. He described it as like taking off the siding in a commercial jet and trying to cut a wire that is clustered in with a bunch of other important stuff and if you make a mistake the plane goes down. He said the healing process is a lot longer and that he thinks removing the whole styloid would be unnecessary.
He also mentioned the styloids are a lot thicker near the base and he would need a different tool(i think he mentioned like a drill and one other thing) that could be harder to use in such an important area.
I told him that I had heard kind of the opposite - a risk of infection that is different because it is in the mouth, and that removing just a portion of it may not solve my symptoms.
Dr. Schindler shook his head when I mentioned infection and said basically that the risk of infection from the transcranial is just as bad or worse. He explained that they feel that the transcranial approach would be for a more complicated and specific type of ES where there were nerves tangled around the styloid or something like that. I am assuming people with more vascular symptoms and compression.
He mentioned that the styloid is used in swallowing and that there is a ligament attatched to it, which I already knew. And that he would prefer not to try to remove the whole structure if it isn’t necessary to do so.
He told me that he gets probably around a dozen ES referrals every year, but that he only does one of two surgeries a year because they usually find something else that they think is the cause.
He said with my case, when you can feel it in the mouth and see it on the CT, and the symptoms + duration, that he feels like it would be one of those one to two cases a year he treats. He said he feels confident that I would be a good candidate for the surgery and that he feels strongly that I would feel relief from the process.
Also that since it is easy to locate in my mouth that it simplifies the approach over transcranial.
He said he won’t refuse to do the transcranial approach if I insist but that he thinks that it would be a really simple extraction through the mouth since you can feel exactly where to make the insicion.
He told me the stitches should dissolve on their own and that I’d be on a soft diet for a week or two. He said some patients felt relief before even leaving the office, which he found strange, but that many of them feel better within days. Told me I should have a sore throat for a week or two. He said I would go in after about a month for follow-up.
I told him I would love to take a chance at feeling normal again. He said his office would call me soon and we could schedule something but that he thinks he could have it done by the end of the summer.
All in all, sounds a lot like a wisdom tooth extraction to me.
I have a fear that my styloid could grow back with that approach, but Schindler seemed like he had a lot of experience and and I felt pretty comfortable talking with him, no bad vibes. He seemed like he was having a busy day but was very understanding and seemed to be most concerned with my comfort and well being, including wanting to take as little risk as possible to my health.
I forgot to ask him if I would be under anesthesia for the procedure and how long I would be off my feet. I don’t think I brought up what would happen if they ran into a problem with the oral procedure and couldn’t see very well. I also didnt mention anything about my right shoulder and arm pain as I am not 100% sure it isn’t from posture / repetative motion and lack of stretching.
With a Dr. as experienced as Schindler, I kind of figure he knows what he is talking about and I can trust him more than a pill-pushing PCP.
But I was probably going to message him a few questions about recovery and the procedure itsself.
So what do you guys think? I feel pretty good about his offer. But many of you have been down this path and I value your imput as well. Do you think I should mention it hurts to sleep on my right side, and see if he thinks it has any connection? Are there any glaring omissions that you noticed?
I kind of want to go back and read the report of the 17 year old on this site that had a procedure with Schindler again.
