New. Scared. Welcome advice (maybe a little comfort?)

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Hi all-
May I ask a few questions of the experts here? Please bear with me as I navigate a long post:

For a year and a half Ive have left-sided pain like muscles pulling in and around C1/C2 and like it’s pulling on my inner ear and tongue burning non-stop all day every day…no other symptoms- no burning in my neck or face, no headache, no stabbing pain, not feeling throat pain.

Ive been through the wringer like everyone here. Imaging, meds, surgery because they thought my symptoms were from reflux, poor diagnoses, even asking ME what I’m finding online, many PTs & Chiros, exercises, meds (cymbalta, Gabapentin, amitryptaline, nortryptaline, muscle relaxers, anxiety meds - but a couple stiff drinks seem to help!) …the rabbit holes are endless. Ive had multiple chiros tell me there’s subluxation occurring in my cervical spine but no one can solidly agree on exactly where (C1-C4). One of my PTs says C1 is the culprit (which I can feel it protrudes more on the painful left side) another PT is less than happy about the C3/C4 mobility, a third PT agrees to C3/C4 mobility issues. I’ve also had many muscular issues in my neck (tight muscles/compensation/tone). No other issues, mild C6/C7 degeneration (normal for my age), no other falls, injuries, rotation is pretty good, etc

Here’s the fun part: I’ve recently just gotten an email response from my pain mgmt doctor that both Styloids are “definitely longer than normal” but the right is longer than the left (my left side is problematic) and in great doctor fashion, he shared little details like size. He did say it was hard to see what was causing the pain from the image (CT with contrast) and seems unwilling to further investigte. Only that he’s going to reach out to colleagues for injection options if I choose. You can imagine, I’m livid at the lack of detail and it sure doesn’t feel like an official diagnosis given Ive only had one consult with him. As of today, I have a consult with Dr Ondrey on 10/21 and my images are being sent to Dr Omlie for review. I’m also hoping to get more details on the lengths of styloid (on the phone now to request this info)

I know ES symptoms can be broad, often times asymptotic and I’m not looking for an official diagnosis here, but I am curious about any input on my scenario you might have. I don’t know what else to even ask the doctors at this point.

  • can ES cause muscle tension feelings (like a bad knot) and mess with cervical alignment?
    -is there anyone who’s dealt with tongue burning and have had surgery, does it go away?
    -are there any diagnostics besides CT?
    -can a CT scan show what nerves could be involved (especially as it relates to tongue burning - I’ve been told this is from the trigeminal nerve).

I welcome any feedback. I know how “lucky” I may be compared to others but no lie, I’m TERRIFIED of this!! My anxiety is off the charts, I’m not eating, not sleeping and just a hot mess. :cry:

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Hi Tjmhawk,
I have the same c1-c2 pulling and ear pain although not sure if ear pain is fully the cause of c1-c2. The tongue burning is likely related to the glossapharengeal nerve which is usually decompressed in ES surgeries. Some patients have speech issues related to the tongue after ES surgery because of nerve damage which usually heals and goes away.
Ive had all the neck problems as you but have neck instability from ehlers danlos hypermobility which has also caused TMJ problems - I have had trigeminal nerve problems as well. Im with you on the stiff drinks! :crazy_face:
I have had these problems for decades and have sought out regular chiropractic, massage, acupunture, dry needling…cranial sacral manipulation. The past two years I have had regular botox, steroid and nerve block injections in jaw, skull and neck. Prior to ES surgery, I found the steroid injections to be the most helpful. Personally I think the inflammation causes the swelling in the neck to further compress the nerves.
Can ES cause muscle tension? my answer is yes but I do think overall muscle tightness in neck can inflame nerves and cause further swelling impacting the cervical alignment. Its all interconnected. MY TMJ doc thinks muscle tension in neck clamps down on elongated styloids and/or calcifications causing the pain and nerve compression. He may have a point.
CT scan without contrast is the gold standard for ES diagnosis. If this doc wont order it, try and get your PCP to order one for you.
Fiesta MRI (not easily found in rural areas) are the scan of choice to read nerves and soft tissue. A regular MRI will not read nerves.
YOU can request your current scan and the radiology report by patient record request. The report may or may not give measurements of styloids and are open to interpretation by radiologists. It is best to have an experienced ES doc read the scan for accuracy. We can help you convert the scan yourself into 3D and maybe assist in reading it or pointing issues out. We are not doctors but all of us have learned to read our scans to a certain degree as so many post theirs here for feedback.
Take a breath, a few deep breaths. You are in the right place to get help and support. Dr. Omlie has a good reputation from what I have heard and you are in good hands. Although it may sound bad, having ES surgery is not terrible surgery especially in the hands of a very experienced ES surgeon. I was down to one pain killer 2 days after surgery and walking a mile. I had a horrible experience with a tooth extraction a couple months ago and told my dentist Id rather have my neck cut open than go thru that again. The recovery from ES surgery for the most part is a walk in the park. You are gonna be ok.

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Snapple’s given you really good advice; I think lots of us on here have had other neck&/ or jaw issues as well as ES, so it is hard to separate what is causing what…the info in the Newbies Guide Section if you’ve not already seen it covers symptoms so you can see that others have experienced the symptoms you mention. I have C5-C6 prolapsed disc; between that & the bilateral ES I had lots of muscle tension, which compressed nerves. I’ve had some good results from physiotherapy & neck stretching exercises & surgery.
It sounds like you’ve tried lots of nerve pain meds already; there are steroid/ lidocaine injections into the styloid area which can help, so it might be possible that these could work for you; you could ask about that if you see one of the doctors you’ve been referred to. Both are on our list, you can use the search function to look for info about the doctors if you want.
Surgery is always scary, but if done by an experienced neck surgeon the risks are lessened, & the outcomes good. The surgery was easier than I expected too, but it does depend on the method of surgery.
From the symptoms you’ve described, it sounds as though it might not be vascular ES (where the blood vessels are compressed), so that’s a positive for you. I hope reading others’ stories on here will help your anxiety, sending you a hug… :hugs: :hugs:

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@Snapple2020
Thank you so kindly for taking time to share so much with me. I’ve lurked here probably far too consistently in the last several days and am feeling pretty well-educated for a beginner.

There’s definitely an array of emotions one goes through trying to figure this all out. Without stating what everyone here already knows about the emotional aspect, I’m just hoping the report can come back official. Certainly, it will raise far many more questions however, my hope is that it will lead me to an end to this battle.

I’m glad to hear the surgery (if my path leads here) isn’t that big of a deal if in the right hands. I had Fundoplication (reflux) surgery last year because they thought my symptoms were related. Although my body healed quickly, THAT was not a fun recovery at all. Worse when you discover your symptoms are still present.

May I ask about your story? How are you doing after having had your surgery?

Again, thank you for replying. It’s overwhelming to find comfort in strangers because no one else knows what you’re going through. :purple_heart:

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@Jules
Many thank you’s for replying. I’m so touched by the kindness and willingness to help & support folks like me here. :purple_heart:

The wait is on to just get an official diagnosis…this will feel like forever. I’ve never wanted something so badly just so I could feel like there might be a light at the end of the tunnel.

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Very interesting they would do a fundoplication. Im curious what symptoms they related to reflux? I almost had that done in July because I have reflux and a small hiatal hernia. I ended up canceling it when my PCP said I wouldn’t be able to vomit. I was originally going to do what is called a TIF procedure which was less invasive but they were seeing alot of failures. It seemed like it would be a narly recovery but I figured Id lose a few lbs.

Ive had neck problems since my early 20’s and I am now 65. I had two whiplash accidents at age 19 and 21 and was also a drafter and leaning over a desk alot which gave me severe headaches. I also had my tonsils out at age 17. There is alot of ES patients that have had tonsils out. I figured out early on that chiropractic and PT/massage helped. In my 30’s I had some rounds of proliferon as my orthopedics felt I had neck instability and I had been over-adjusted. They also told me I was hypermobile. At the time, I didnt know I had ehlers danlos-hypermobility. In my late 30’s, early 40’s I started having jaw pain (along w severe occipital pain) and went to 2 pain centers in Los Angeles. I was under alot of stress. Thats when I found out about cranial sacral therapy. It took about 6 months of weekly massage, OT and cranial sacral work to pull that pain under control. Ive since learned when things are getting out of control to get on it right away with all the therapies. In 2015 (age 60), I started having severe shooting pains starting in the middle of my throat up to my ear and what felt like an explosion in my ear and it felt like a bone in my throat. After a few doc visits and MRI’s, (no one could figure out what was wrong) I was given some oral steroids which helped at the time. A year later I had another flair but on the other side. I also sought out some TMJ specialists too. I later learned the CT scan they did back then had the elongated styloids and calcifications but they didnt consider it to be a problem. In 2018 & 19 I went to a new pain specialist and had some injections and dry needling. When it was helping very much I was referred to a neurologist for more in depth injections. It was then he mentioned Eagles. Thats when I started doing my research and found this blog. I happened to have a real bad pain flair and pressured my PCP to do the cat scan (he thought it was TMJ). Low and behold there was indications I had eagles. In short order, I sent the scan to Dr. Samji and had my answer within a couple weeks and I had surgery a couple months later.
I was warned that the surgery may kick up my TMJ. It did and it took a few months (april 2020) to calm down. Other than that, I recovered well. My 2nd surgery was in Dec 2020. I had some tongue issues but no tmj flair from that one. A couple months later I got my TMJ appliance to realign my jaw. I was actually doing quite well 6-7 months after surgery until I had to have an emergency tooth extraction (June) which caused my Trigeminal nerve to go crazy. I honestly just wanted to put into a coma until it all past. It was excrutiating. It took weeks to pass. I still have alot of numbness in my neck but I get regular massage and work on the scar tissue. Dr. Samji is really good at making his incision in a wrinkle in the neck so you cant even see a scar. Pretty good given I had about a 4" incision on both sides.

This blog saved me. Once I found out what it was and had the support of others here, it made all the difference in the world. No one can relate to it unless they have walked the same path. Since alot of docs out there dont know much about eagles or believe it causes all these problems, the support here helps you keep going to get the answers you need.

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Wow! After reading your history, I hardly feel I have anything to complain about! Except I feel like my neck & tongue has had a bad flu/ repeatedly ran over by a Mack truck for the last 18mos.

I originally was referred to an ENT as CV19 hit. They couldn’t figure out my throat burn and ear fullness. Every test/lab they did came back perfect until the ENT did a laryngoscopy. My vocal chords were inflamed and LPR was diagnosed. No heartburn or typical signs of GERD except for a bad phlegmy cough and bad post nasal drip…most typical of LPR. Was scoped by my GI doc which came back fine and was advised by ENT that if meds didn’t help I should consider surgery.

The throat/tongue burn & ear fullness never left with meds but hindsight, all the other symptoms did. I ended up desperate for relief & had surgery. I’m successfully reflux free (except lately some mild symptoms with stress are back. I had a “loose 360” fundo so I can still put out a mean belch and can vomit if necessary…eating happily what I want.

The sad part is after surgery I learned that the ENT should have correlated my symptoms far better. Only a person with REALLY bad reflux who’s burping up acid would complain about throat burn and full ears. That person would also have really angry vocal chords…unlike mine that were described as merely “puffy”. So I pretty much had a surgery I really didn’t need. Furthermore, there’s potential my current happenings could’ve been the reason behind my reflux to begin with. Ie, Vegus nerve.

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Interesting to hear abut the loose 360 fundo. I will look into that as I have significant gerd. I understand the desperation to fix something and unfortunately experienced in my life, wrong or inaccurate diagnosis or suggestions that I should have gotten a 2nd or 3rd opinion about before proceeding with a surgery. We learn these things after the fact but we do our due diligence after those experiences like you are doing. Live and learn right? :roll_eyes: It seems these GI’s make $$ on doing these procedures and gain the surgery experience.
There is alot of ES patients who do have vagus nerve involvement. Whatever process occurs to create the calcifications I think is inflammatory. Swelling and nerve compression follow. The more pain we are in, the more we tense up the neck muscles and its a vicious cycle. Based on oral steroids (and steroid injections) knocking down a major pain flair in my neck and ears very quickly…I think its safe to come to that conclusion.
I too went to an ENT in 2015 with the neck & ear pain thinking “ear” problem. That ENT was useless and MRI showed nothing. Luckily I found a neck & spine surgeon that at least gave me steroids. I will share that during one of my worst pain flairs before 1st surgery, I was having eye twitches on one side of my face for months, when I had a major pain flair, my sinus’s and eyes began to run. Although I suspect the trigeminal nerve was involved, the neurologist suggested the runny nose and eye was a response to pain. We have so many nerves running into the face and skull from the neck and lymph nodes in neck. Its really hard to sometimes tell what is the cause of every symptom. We do know here by sharing our stories, we have alot of similarities.

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