A Few Questions- Potential Procedure - (Vago)glossopharyngeal neuralgia/ Anyone in Omaha?

General
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Hi all. It’s been a while.

I was diagnosed in early 2017 (I think? Late 2016? Gee. I don’t know); though I met with a head and neck oncologist who knew about and had performed procedures for Eagle’s Syndrome, he was hesitant to do a procedure.

My styloids are not outrageously long, but I definitely feel them/they became a more annoying and painful issue in the last few years. Even then, I was on the fence. This surgeon was willing, but only if I really wanted to go through with it; he made me aware of the pain and the risks, and says that he has had more people who had success with it, but also some who said that their condition worsened after the fact-so he wanted me to be sure.

I think he wasn’t convinced that my pain was enough to go through with a tonsillectomy / this procedure - he wanted me to try the steroids first, which didn’t do a whole lot for me. Which is fine-again, he was willing, but I think he wanted me to be sure that it wasn’t something I could live with / avoid surgery as a young person (I don’t know). I understand why he would want to save someone who wasn’t totally at a loss yet the trouble; but here I am now, ready to commit.

Here’s the deal: I haven’t had a whole lot of issues with this, but I did contract a virus about two weeks ago, and came up with the most bizarre sensations / pain on my right side (my problem Eagle’s side) - with seizures and some scary, scary residual neurological (I’m concerned even cardiac) issues that thank God, have cleared up more every day that the virus went away, but that are so concerning and not completely gone. It’s been a ride; my patience has been tested-learning just how much patience and sometimes trust you have to have when you can’t get to the right specialists right away. Ugh. Yikes. It’s been hard and scary.

It became clear that these seizure episodes (?) were being caused by this neck sensation that, I originally, thought was the elongated bone itself causing the issue- when you have to wait three weeks / don’t know what you’re dealing with before you see your specialist for this stuff / don’t get a great response or urgency with anyone else, you do some research.

Typing in the very specific sensations, I came across glossopharyngeal neuralgia, and the symptoms fit to a tee; I saw immediately that this could be triggered by viruses, and (so nuts!) can be irritated by Eagle’s syndrome, even if distally-this just matched the minute I read it, and was the about the only result from the adjectives that I was using. I saw that there was even more to it, with the potential vago-version of it, that I am hoping that is not full force (but again, I am getting better every day, still with some lingering concerns)-I did have some arrhythmias and chest pressure, and when it was really bad, it seemed almost threatening to my heart/blood pressure. I never passed out or had syncope, but it felt like it could’ve happened any minute. This condition just makes sense considering all things, and I have decided that I am just not dealing with this threat again; no way. This surgery has to happen. I’m donezo!

I have no idea if Dr. Coughlin (anyone?? Omaha?) will be thinking this before I suggest it (I am not going to be afraid to share my thoughts with him after waiting this long, no way), and if it may be an urgent matter or if he will be scheduling this surgery a few weeks from now (gosh, I just want it over with).

He said that he would likely proceed intraorally/ maybe he will change his mind after this; I am hoping that he is educated on not just the fracturing. This is my concern; any suggestions to ask him / demand answers from his process? He didn’t mention nerve monitoring–I don’t believe. I am just not sure there is anyone else in Omaha who does this procedure, and it is getting to be potentially a time-sensitive situation. I will go ahead with it with him, but if anyone has thoughts or suggestions I am open to them. It was also only to be done to my right side though I do have bilateral elongation.

Thank you all!

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Sorry to read that your symptoms have worsened over time, unfortunately it happens to lots of us…
There is one other doctor on the list in the Doctors Info section in Omaha- Dr Dan Lydiatt, University of Nebraska Medical Centre, Methodist Clinic- if that’s any help.
I think you’ve answered your own questions about what to ask your surgeon- check that they understand as much of the styloid process as possible needs to be removed, check that they will smooth over what’s left, not fracture & leave bits in place, & monitor the nerves during surgery…
I would just say that if you’re not happy with him & his answers then it’s worth considering travelling to see someone with more experience- I appreciate that these new symptoms are worrying for you, but it’s better to get this surgery done right the first time.
I hope that things settle down while you wait for your appt., & let us know how you get on!

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I agree; this is a concern for sure. I think the biggest factor is going to be if he is concerned about potential cardiac symptoms that I am having with this-pretty awful seizures too. If it’s time-sensitive in that manner, that will be where I have to maybe trust this surgeon (in the case I have no choice)-he is at the same clinic as Lydiatt and they do work together, which is good to hear. Otherwise, if this resolves and subsides, now that I am seriously considering this, I will look to travelling. Is there an indication on the list who are the real specialists? I know Dr. Samji’s name. Thanks for your help!

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Dr. Samji & Dr. Cognetti (Philadelphia) are the 2 most experienced surgeons in the US (at least seemingly so from this site). Dr. Samji is at the top of the list in my book. Just to “comfort” you, I also had heart palpitations, blood pressure drops, feeling like I’d pass out but never did, shortness of breath. These symptoms became common when I exercised so I stopped. The seizure issue does sound scary but if your styloids are compressing vital vascular tissues & cranial nerves simultaneously seizures might be possible. You might have experienced some inflammation from the virus that set you up for worsening ES symptoms.

It’s possible that the people Dr. Coughlin operated on who didn’t have good results had bilateral ES & opted not to have a second surgery for the remaining styloid because the didn’t have symptom relief after the first styloid was removed. Sadly we’re finding that even more experienced ES doctors don’t realize that ES symptoms don’t necessarily go away after 1 styloid is removed because there’s still 1 remaining that’s making itself known. Instead of encouraging their patients to have a second surgery to remove the remaining offending bone, they assume as do their patients, that surgery has been unsuccessful so no other surgery is recommended. Be aware that your remaining styloid though potentially not symptomatic now can begin to alert you to it’s presence once the other styloid is removed.

I’m sorry you’re going through all this but our bodies do have a habit of trying to tell us when something is wrong so we can try to fix it/get it fixed. I guess yours is making a major proclamation.

Hoping & praying you have a good a great outcome from your surgery!

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I really appreciate this.

That could definitely be, with his past patients. I’m the final hours of waiting before I grill him on questions about his procedure methods, haha!

I know he had mentioned that remaining styloid could be an issue; it’s one he has seen before-guess that question then is, is he willing to remove the left side eventually (heck, how about just set a date?).

I was able to find one patient on this forum who used a surgeon from KS, who has performed 10 procedures by 2015; she said he was adamant about cutting back and filing down, & she had great results. That surgeon is much closer if needed.

Now that I think back, I had a second appointment with Couglin & it was because I was having trouble IDing the cause of my reoccurring sinus infections; we looked to the CT that I had done, & then talked a little about how the Eagle’s stuff was going-I think he thought that we may just remove the tonsils with all of the issues that I was having & that may have been why he opted for intraoral as the option for me at the time; I have a feeling he will be more willing to discuss extraoral tomorrow. I just have some questions for him.
Extraoral is the way I want to go if it’s done with the correct standards.

While I’d love to just show in Philedelphia or San Jose this week, I am not sure what is feasible; I am certainly not going to shut those options down in the case that this isn’t urgent. As of right now, though, these symptoms are pretty severe & interrupting my life completely; if I could go under the knife right now, I would! But I will be discerning too.

Thank you so much for the prayers. They mean a great deal. I have faith I’ll get this issue resolved & in the right way.

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Mkalicet what are your cardiac symptoms?

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Hi please can someone explain to me how vagus nerve can be affected and what the symptoms are?

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The vagus nerve is one of the cranial nerves, so it comes out from the brain & down into the body close to where the styloid processes are, so could be irritated or damaged if the styloids are rubbing against it or compressing it. The vagus nerve controls heart rate, it also controls some stomach functions, so if it’s damaged or irritated it can cause unusual heart rates, nausea & vomiting, lower stomach acid, & can affect blood pressure. It can also affect the throat & voice. Here’s a link: https://www.healthline.com/human-body-maps/vagus-nerve#problems

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The vagus nerve also plays a role in manipulating anxiety levels. Here is an excerpt from Psychology Spot:

"The vagus nerve intervenes in the sensitivity of the respiratory mucous membranes and transmits the rhythm, strength and frequency of breathing. It affects the pharynx, the larynx, the esophagus, the trachea and the bronchi, as well as administering nerve fibers to the heart, stomach, pancreas and liver. But it also carries out the inverse mission; that is, it receives signals from the internal organs and sends them to the brain to be processed.

Although perhaps the most interesting thing is the relationship between the vagus nerve and anxiety as it also transmits signals of nervousness or calm, anger or relaxation." https://psychology-spot.com/vagus-nerve-disorders/

There are also some very technical articles online covering this topic but I liked the simplicity of the Psychology Spot article.

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Thank you Isaiah and Jules your always so helpful.

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July123,
Glad to be here for you!

:blush:

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Well, if it were me with all that going on, I would call Dr. Samji’s Office in San Jose and get in touch with his nurse Kimberly. Explain what is going on, get a CT to Dr. Samji and he should get you in fairly soon.
I am in San Jose right now, recouping from my first side, on the left , for a styloidectomy that Dr. Samji preformed this past Monday.
I live in Texas, and I must say the whole experience has been truly amazing. I am almost 3 days post op and I feel so much better. Of course I am on some pain meds and steroids, but I can definitely say without a doubt, that it is worth it.
Mine was long and sharp he said , and nerves were wrapped around the styloid. He took it completely out in pieces. I can’t believe this difficult journey is coming to an end. FINALLY!:woman_facepalming:
Out of 17 symptoms I made a list of before I went under the knife, 10 of them have completely disappeared!!
Dr. Samji knows what he is doing. He has performed over 300 of these surgeries.
Get a plane ticket, arrange for a place to stay and someone to drive you back to the hotel and then back to your post op visit !!
I return to Texas in 1 day. I’ll be back in three months for the other side!!!
I hope you can come to grips with this soon, I know your pain.
Hang in their- gbr

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Thanks for the encouragement. I have my pre-op with Dr Samji a week from tomorrow. I leave from Louisiana next Thursday. I’m not looking forward to the long plane ride as I have sciatic problems but I’m looking forward to getting some relief from this dreadful ES. I’m so happy for you that your surgery went well. From reading other posts on this site, don’t get discouraged if some of your symptoms come back when you get off the steroids. It may take time for your nerves to heal completely. Please keep us updated.

God bless!

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Really glad that your surgery has gone well & that you’re already noticing some symptoms gone, that’s brilliant! Take it easy & hope the rest of your recovery goes well! :bouquet:

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Mkalicet
Dr Keith Sale does skull base surgery. He operated on someone on this website with a great recommendation. He is at University of Kansas, Kansas City. I called his office about his insurance because I am on medicare. Because I am so far from CA and PA, I thought about reaching out to him. It would only be a 2 day drive for me, but I am sure it is closer for you. I have not contacted him, though. I may have found my doctor in Louisiana. If you search for Keith Sale, you will find the discussion about him and the member who recommended him. Good luck

eaglesnest ---- on my prayer list, best wishes

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Thank you emma for putting me on your prayer list. Prayers are always welcome. I will be praying for you also. Dr Samji told me he has done close to 250 surgeries for this. My surgery is next Monday. :pray:

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I really appreciate this; Dr. Keith is on my list to contact.

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I was having some pretty freaky sensations / palpitations / near syncope with my GPN attacks. Still no confirmation on the cardiac or vago part of this, but I am improving; it was very scary at the time.

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Thanks Jules (+ everyone else reading this!)
I ended up finding out that the issue was very likely GPN, with some pretty wacky neurological symptoms with it that were sort of nondescript (kind of TIA-like symptoms, kind of seizure-like, but neither-terrifying nonetheless. Definitely have some PTSD :upside_down_face: that I’ll be working through). Likely flared up by a mystery virus that I contracted. Viral symptoms went away after about a week while the GPN and the creepy neuro symptoms have been going away much slower (but are much, much better); pursuing chiropractic and taking some nerve relaxing meds that my Eagle’s doctor (Coughlin) prescribed me for the time being.

Going through this, like I said, pretty much solidified the decision to pursue a procedure. It’s nothing that I want to do, of course, but I definitely feel like at this point, all things considered, I need to.

Dr. Couglin has agreed to pursue the procedure with all of this going on (he is the one who diagnosed the GPN), and at my last appointment agreed that the external route is the way to go (P.S. Dr. Couglin and Dr. Lydiatt are in the same office)–they are having a radiologist look more closely at my CT scan to see if there is any evidence into what might be getting irritated (not sure if they’ll find much, but I am glad he is being thorough)—he has just wanted to be as thorough as possible before I pursue something that I need to understand “has risk to make it worse”–which I appreciate; he also mentioned that he will cut the bone back to the skull as long as he is able to, and understands how this is important. He also monitors nerves. He really is an excellent surgeon (generally a head and neck oncologist) / his team is awesome, but I still want to ask all that I need to ask. I think he has done maybe 7 procedures or so—I know some intraorally, so perhaps those patients were the ones that he mentioned were having issues come back. I know that it’s a risk no matter what. I will ask him a few more questions before I pursue this, and I am looking into the possibility of seeing Dr. Samji or Congetti if it is feasible—most definitely will get this procedure done with one of them if the cost is not outrageous. I expect to pay more than I would locally, but since I am still dependent on my parents’ finances and insurance, and because I am a college student racking up the loans, I have to make sure that I am considering all of my good options. I also have Dr. Sale in Kansas to contact. Will be getting my ducks in a row here, as it will likely be most cost effective to pursue this first side this year (clock’s ticking!) I made a point to explain to my parents that the second side might need to be taken care of at some point as well. I am just thankful to have had these meds to calm this issue down and to have had improvement of some kind everyday. Scary, scary stuff, y’all.

I am writing a new post with some questions about extraoral surgery recovery.

Let me know if you have any more thoughts on this thread or what I’ve written here! Sorry this is a choppy reply, a bit tired at the moment–you get the gist :wink: Hope you are well.

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Sounds like you have a good, thorough doctor, but it’s a good idea to look into costs of others too. I’m glad there are slow improvements in your symptoms… I hope that the weird ones improve after surgery too. Thinking of you…