My ES Path (in one long thread)

(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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Thank you for your update! I’m so pleased for you that you met with such a helpful pain management doctor, and I hope that you can be reassured by him telling you the nerves are still healing…I’m sure it is hard to find that the pain’s still there, but we do see this alot on the forum. There was a really good discussion with info about the pain cycle a long while ago but haven’t been able to find it. It’s very interesting…
Sending you a hug & thanks for your honesty, & your ongoing support of others going through this :hugs:

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Amazing post, @Tjmhawk01! Thank you for taking the time to give so much detail. The psychological issues that pain cause are very real & traumatic. Seeing someone who can help you unravel the emotions & understand where they come from will help much toward healing. Good mental health is invaluable, & those who help us get to & stay in that state are truly angels on earth. I’m so glad you found a doctor who understands that & was compassionate enough to encourage you to seek the counsel that will benefit you.

I look forward to keeping up with your journey as you have new information to post. :heart:

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Be careful with the Lyrica. My mother was just diagnosed with kidney damage from Lyrica and she actually became toxic on it. Try to stick with the lowest dose that you can get some relief with. I hope you are able to see some improvement over the coming months!

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How long had she been on it & at what dose if it’s ok to ask? I expect to be on 200mg daily at most. Which he said is still very low.

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400 mg daily for 15 years. She has trigeminal neuralgia.

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I’m very sorry to hear about your mother’s situation, @beachlady. Does the doctor know if the kidney damage is irreversible or could her kidneys recover if she no longer takes the Lyrica?

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The kidney damage does not require dialysis which is good. There’s no way to reverse it though. The nephrologist reduced her from 400 to 150 a day. We were so thankful for her to have the Lyrica all these years to help her with the TN never knowing what it can do to the kidneys. The ER doctor told us “Lyrica can kill you.” I was shocked. Nerve issues are so tricky to deal with. :weary:

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Thank you for sharing.

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I’m glad the problem was caught before her kidneys suffered more damage. I hope the lower dose of Lyrica will still be helpful for her.

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Very hard for your mum, as @Isaiah_40_31 says, I hope that the lower dose is enough to help, or otherwise if an alternative can be found to work…

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Hi all,
I’ve been a little removed as I’m still trying to navigate this process. I’m about 12 1/2 weeks post op and all the old symptoms are still pretty much there so to me, it feels like the styloid perhaps not the true source.

Lyrica is controlling the nerve pain by a fair degree. My PM doc said there’s room to go up in dose but again, this is merely a bandaid.

There’s clearly still something going on cervically - I’ve been visiting with a myofacial PT for almost 6 weeks now and doing deep neck flexor strengthening religiously for several weeks and I’m not sure I notice too much of a difference- maybe I am but because it’s always there, I just dont notice any subtle improvements. They tell me the left side is in protection mode and reference anywhere from C1-C3. Most recently stating that upon extension it’s like my vertebrae skips a beat at C3 when my neck flexors aren’t engaged. When they are, extension moves seamlessly.

I’m meeting with a more traditional PT in a couple weeks who has a strong focus in orthopedic manual therapy to see what he can tell me.

I’m also going to try & schedule with a different Chiro. I’m not a firm believer in Chiro care because most I’ve met with to this point feel like used car salesmen and the treatments have never been beneficial. However, I found one who has excellent patient reviews, being described as “humble” and who uses several therapy types…not just adjustments (I’m hopeful he’s also at least somewhat familiar with ES).

It’s all about building a team and see where it goes.

So there’s the update, folks. I’m a bit bummed this surgery didn’t give me the relief yet that I had hoped but I can rule out the left styloid which was definitely impacted by whatever it is that I have going on.

Peace to all :v:t3::blush:

Thank you so much for your update @Tjmhawk01. I hear your disappointment & frustration. I’m very sorry you’re not having more significant improvement from your ES surgery, but there are still some months ahead where you may notice positive changes. (Hope springs eternal in my world. :innocent:)

The “hiccup” in your c-spine w/ neck extension is an interesting twist. Have you had a dynamic scan of your neck to see if there is anything visually detectable that could be causing glossopharyngeal nerve issues?

I have high hopes the new PT & chiropractor will be able to offer you healing therapies. Please continue to keep us posted. I will keep praying for you. :gift_heart:

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Thanks for the post! Please update as long as you keep seeing the changes. I’m sure you’ll be fully recovered!

Peace.

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No scans, and this is something I’ve inquired about - specifically asking if there’s any value in further imaging, and being told no. I’m in disbelief over this but is also where I reference “building a team”. A Chiro and/or and orthopedic PT may see it differently

I first need to have a more concrete opinion/diagnosis as to what’s going on with my spine and by someone who’s more qualified. It could be that it’s just a matter of having a multi-disciplinary approach. And being chronic, it may not come easy to correct. I’ll get there…I’ve come too far to not expect answers with solutions. :wink:

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So sorry that surgery hasn’t resolved your symptoms, very frustrating for you…I’m in Isaiah’s camp that there is still time! I can’t remember, & I’m sorry, but did you have bilateral ES, or was just one side symptomatic? We have had members who’ve not had an end to their symptoms until both sides were done, but obviously you have other issues going on with your neck which need looking into. I hope at least for you that the lyrica keeps the pain under control while you explore this other stuff…hugs and prayers :hugs: :pray:

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Yes, bilateral but the right has no symptoms. So many questions to answer before I can consider removing the other side.

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Yes, you don’t want more surgery if not needed, but worth bearing in mind if you don’t get any other answers… :hugs:

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Hey all, been a bit since I checked in. I wanted to wait until I had something more than nothing to report.

  • I wrapped up PT a few weeks ago with a cranio-sacral group. The two therapists I spent time with have summed up that C1-C3 are “in a strong pattern of dysfunction (protection)”. They believe my cervical spine and associated structures is not the source but cause a lot of secondary strife.

  • I saw a PM&R who ordered an MRI. That came back pretty normal with mild to moderate facet arthritis in the upper cervical segments, a mild bulge and mild degeneration at lower segments. Also very mild lordosis. This all is a result of normal wear and tear and age. Take anyone my age off the street and this is what you’ll see. So basically, the MRI is normal and checks out with my CT.

  • I had a steroid injection a few days later anteriorly into my SCM. They say 7-10 days to work and I still feel like I have this tight, inflamed issue deep in under my SCM (where that styloid was).

  • I was less than impressed with this PM&R so I visited with another this past Monday who specifically works with neck and spine. He reviewed my MRI, agrees that results are quite normal and feels my pain is not related to the mild-moderate facet arthritis because of where the pain is, because my mobility is fine and there’s no pain in the facet area. He said he’s putting his chips on the table that it’s a muscle/myofacial/trigger point issue. Which brings me full circle to where I was going with this 2 yrs ago. He put me on low dose Celebrex (temporarily) to work on controlling the inflammation- which I believe has helped some but may take another week or so, and I’ll be going back for another steroid injection 9/2 (hopefully not in the SCM as I dont feel this is the culprit and I explained this to the last doc). I’m also going back to dry needling now that I have new knowledge. The Dr put this in great terms: “if you take a large tree down, you don’t cut it in one cut, you attack it from different angles and this is how we’re going to treat you…medication to control inflammation as well as another injection. Then we’ll asses again”
    Also stating, “if this were a small fire that was just recently lit, you could put it out easily with a cup of water. Since this fire has been burning for so long, a cup of water may take care of surface flames temporarily, but not the hot coals underneath”. Both great analogies!

So, my path continues…I’ve come a little ways in the last several weeks. I hope to see this come to an end soon…I’m just waiting for that moment when something bites and the pain just goes. I think of you all often, I’m still ever so grateful for the guidance, support and love here!

Love & peace :v:t3: :two_hearts:

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Good analogies, & makes it understandable that things are going so slowly for you, have been thinking of you & wondering how you were getting on, was going to pm you…Good that you have seen small improvements & hope that this continues, good that you have ruled out other issues with your neck after the MRI at least!
Take care of yourself :hugs: :pray:

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