(long) I wanted to start a simplified new thread on this journey of mine. I know sometimes seeing multiple posts littered here there and everywhere can lead others on a forum goose chase and if they’re anything like me, wanting to know the full story from start to end without having to piece threads together. So while lengthly, I hope its still of benefit and I’d like to continue to update here to keep things in one place:
March 2020 when CV19 broke, I developed neck tension, one sided sore throat, ear fullness and a short time later the throat burning began. This was unprovoked from any type of injury, only some anxiousness due to this new pandemic.
It took weeks into months before I could be seen in a doctors office. Long story short I’d been given prednisone, had multiple ENT/GI appts which gave way to a phone diagnosis of LPR and different reflux medications. When I could finally get in office, the ENT did a hearing test which was fine, and a scope which showed my vocal chords were “puffy, but not angry”. I was advised to limit my diet to find the trigger foods – I went down to pretty much eating chicken, rice, bananas and water for weeks losing a very rapid amount of weight to no avail. The ENT suggested that ultimately if meds & diet didn’t help, I should speak to a surgeon about Nissen Fundo surgery. I had the GI scope which also came back pretty normal and the barium swallow test showed that I was refluxing right up to my throat – the doctor suggested a Ph test was unnecessary given the barium showed my issues plain as day. I wish I’d done the Ph test as I’m certain it would’ve come back normal sending a red flag on this diagnosis.
I had the surgery July of ‘20. After getting home from the hospital, all my burning came back 10-fold. I pleaded every other day with my surgeon that something wasn’t right. In the end, he said to my husband and I, “we’ve proven you’re no longer refluxing so it must be anxiety, get your anxiety in check and your symptoms should go”. Similarly, the ENT was of no further help going as far as to suggesting I had BMS and asking what I was finding online for treatment. Where the ENT also failed me is that there’s likely no way that someone with merely “puffy vocal chords” who was not choking up acid would be refluxing so badly that they’d have burning throat – if the burning were caused by acid, my vocal chords would’ve shown to be pretty ugly and I’d have to be choking up acid for this to occur. This is, unfortunately, a hindsight matter. I never went back to either the ENT nor the surgeon.
In the following 18 months, I saw 7 different PT’s, 3 Chiros, further GI/ENT appointments at Mayo Clinic Rochester only to have more meds pushed on to me, CT’s, MRIs and endless prescriptions with a lot of “I don’t know’s”. My physical and mental health were a mess. I began working with a very kind and compassionate Pain Mgmt doctor who suggested a number of therapies. During the same week, it was the last PT I was seeing who after several appts said to me, “have you ever looked up Eagle Syndrome? I don’t know anything about it but you seem to have pain in the area of your styloid”. He pulled out his medical guides and we looked together. This was what prompted me to go back to the notes of my Pain Mgmt doctors appt from a few days earlier and in his notes also stated, “pain in the styloid area”. I immediately messaged him and inquired if ES was a possibility. He said he’d already sent my last CT on to radiology for review. Three days later, on a late Friday afternoon, results came in and stated “longer than normal” with no other information.
I was nothing short of a mess! Now what? Dr. Google shows me how rare this is and yet none of the symptoms lined up with me. The images of surgery also scared the daylights out of me! A massive incision on my neck? I cried for two days straight before finding livingwitheagle.org. I mustered up what life I had in me and joined this forum around Sept ‘21.
I don’t have to refresh anyone’s mind about this forum – there’s nothing I can say that we all don’t already know about it’s amazing members. Its been my life line.
I spent hours scouring, asking, reading, understanding and best of all, getting a realistic perspective not only on symptoms but surgery. Suddenly, things fal into place and I began to believe that this is a fit to all I’d been dealing with.
SURGERY: after meeting with the two known specialists in my area from on the forum list, it appeared evident that ES was a likely diagnosis. I’m bilateral and with a revised maxillofacial CT showing the left measured at 3.5 and the right 3.2. The left was the troublesome side so out it came on May 4, 2022 with Dr. Omlie (vascular surgeon - despite me not having vascular symptoms). To my understanding, the ligament was very calcified and the SP actually measured 4cm upon removal. Surgery was pretty easy – in and out in an hour and a half and a night in the hospital. I was advised that all but the facial nerves are located BEHIND the SP so nerve monitoring wasn’t really used. So given the facial nerve being anterior, it needed to be manipulated a bit - as a result, I’ll likely have a numb earlobe forever like others here. I’m hoping in time it becomes less and less but overall, it doesn’t at all bother me.
RECOVERY: recovery from the surgery itself hasn’t been too big of a deal. As long as common sense is applied, I felt I pushed through it pretty well. I ate appropriately, spent a couple weeks resting, drank a ton of water and took really good care of the incision. My post-op appt with Omlie was 2 weeks later and I felt like I’d made a good decision! The ES symptoms of course were/are still there and quite uncomfortable, but less intense as pre-op. I even had a couple days where I felt 80%.
Today (10 weeks post op), it still feels like scalding hot coffee in my throat however, it now covers less territory in my throat, feels “swollen” in the back of my throat and the pain kind of moves around. I hope some of this is a good sign but it sure doesn’t feel like it right now. I also still notice the “fullness” on the left side of my neck is still there. I’d tapered the gabapentin and switched to a very, very low-dose of Lyrica and have seen some very minor improvements then saw more slight improvements after increasing the night dose but it’s all still very much there and still gets worse as the day goes on. I’ve learned by my own questions here and investigations that likely the burning is a result of the Glossopharyngeal nerve being compressed/irritated - there may be a chance that the neck/ear fullness could also be related as I read here that the auricular branch is a part of that Glosso bundle too which intervates the ear. Whether this is true or not, I’m unsure.
As of current, I’m in a position where my surgeon has done his job and unless my inquiries are directly related to the surgery itself, he’s free and clear of any post-op support. This was made pretty evident from his nurse earlier. And as of recent, we’ve learned Dr. Omlie is no longer “allowed” to do ES surgery – this is a shame because despite the lack of aftercare support as it relates to ES, I believe he’s a fine surgeon. So if he is able to continue these surgeries in the future, I would certainly endorse him. Its unfortunate too that I may need to have side #2 done at some point and my surgeon is no longer available.
Yesterday, I met with my Pain Mgmt doctor again – first appt since diagnosis. We hand an hour long meeting. He suggested that it’s encouraging that when I began taking 25mg Lyrica in the a.m and 50mg at night I was seeing a reduction in my pain noting that this is an incredibly low dose. Furthermore, I noticed a decrease in that “fullness/inflamed” feeling in my neck which eludes to me, also a nerve-related issue. He wants to see me at minimum, 100mg 2x daily which he said is still a very low dose ultimately eliminating the pain so I can “live”. Further discussing how the brain may possibly need this medication to “break the pain cycle” given its been constantly sending those signals for two years now – which is a topic I’ve not really seen much of on this forum and might be worthy of a separate thread. Despite not knowing much about ES, he echoed what everyone here says, “10 weeks is still very early in the nerve healing phase and it will take months”. I don’t know why, but having a person sitting across from you and physically hearing those words makes it sink in so much more.
After I wrapped up with my own questions he said he had some questions of his own: “How are YOU handling this emotionally”. I was unprepared for this question and the tears just unleashed. I said this is the hardest thing I’ve ever gone through to this point in my life. The unknown, the turning over of stones, the fear, the pain, the lack of help, lack of knowledge, the anxiety, misdiagnosis, surgery and still having symptoms, the anxiety induced pain, the hiding behind locked doors to cry out of frustration and because it just hurts….I could’ve gone on more. I felt SO validated in the above-mentioned when he acknowledged me. We talked about pain psychology and recommended I meet with someone. He said this isn’t to assess my mental health, rather to coach me on how to cope. I’ve done this through Mayo Clinic and was less than impressed but am willing to try again perhaps with someone who’s a better fit for me. This man is good at his job. He is an excellent provider and is interested in my well-being. He’s requested several follow-ups from a couple weeks out to a couple moths out.
My takeaway was this: As much as I don’t want to fill my body with meds and just fix the root problem, toughing it out is not an option. For now, I need it to continue my healing journey to see where it goes and to hopefully break any pain cycle that my brain potentially may be in from over the last 2 years. I need to meet with someone outside of my regular support system to gain perspective and guidance. This isn’t to assume I’m a metal health disaster, rather doing something healthy for ME. All good things knowing that I’m still quite early in the game.
This isn’t to say, I’m not discouraged by the pain at this stage. I feel it should be “less” at the very least. And maybe it is, but I just haven’t fully acknowledged it because it’s still always there. I’ll just have to push forward the best way I can.
***To others who are in that diagnosis phase reading this, my advice will still remain to talk, ask questions, do your due diligence and cover all your bases. Don’t assume, bring another pair of ears with you to appointments, ask “why” a lot, expect the unexpected, take the advice here with good faith knowing others have incredible experience behind them to offer you, be kind to yourself, and if you find yourself mentally/emotionally exhausted – it’s ok to seek out that “coach” to help you. This isn’t an easy journey for some but most will do really great over time!
I’d like to update this thread as the weeks/months go on with the hope of adding encouraging and positive notes. I’m also still on a mission to help educate others the best I can and continue to help folks here as I’m able.
Much love & peace!
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