ES with Cervical, Thoracic, Skull Base Pain

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Hi everyone! I’ll start by saying that over the last 19 months this website has been an incredible resource, and I appreciate everyone’s candid posts and responses. My hope in contributing my experience is that others can benefit from the information in the same way I have.

My journey, like others on this forum, started with multiple ENTs having no idea what my problem was. Original symptoms starting in October 2018 were feeling of strangulation, dysphagia, loss of voice, foreign object syndrome. I was treated for anxiety (even though prior to this experience I have never had anxiety), acid reflux, thrush, actinomyces (weird), you name it… I tried every regimen, including vocal therapy. A (likely unnecessary) bilateral tonsillectomy was performed in February 2019, and all of my symptoms returned 10 days post-op. That said, some symptoms went away, and others evolved or new ones appeared. My voice returned, and the strangulation sensation subsided, but a specific area of pain emerged on the right side of my throat, which in July 2019 was identified as a styloid process pushing through the back of my throat.

Current symptoms include:

  • Pain at point of contact in throat with styloid process when I inhale (breath hurts, similar to a sensitive tooth).
  • Occasional trouble swallowing
  • Occasional incidents when my heart starts racing (some resulting a trip to the ER). Some doctors tell me it’s anxiety, but I don’t feel anxious leading up to the incidents, so I have no idea. I purchased an Apple watch to track these incidents.
  • Pain along right side of neck
  • Severe Pain and cracking of cervical spine when I inhale.
  • Severe Pain and and “crunching” at base of skull when I move head.
  • Headaches.
  • Recent onset of chest pain (feels like referral from nerves in throat, but can’t tell for sure).
  • Severe Pain and popping in shoulders and upper back/thoracic spine.
  • Trouble holding head and neck up.
  • Pain in head and neck and spine after physical activity.
  • Ringing in right ear.

My surgery is currently scheduled for Feb. 18th with Dr. Karni and Dr. Day in Houston, TX. Actually hoping to move it up to next week. After corresponding with multiple doctors, I felt this team was the best equipped to handle, incredibly responsive and genuinely concerned. The plan is to go in intraorally but if the doctors determine during surgery that the intraoral approach is ill-advised, they will pivot and perform the extraoral approach. I trust the doctors will make the right decision.

I will keep everyone updated, and like many others, I am hopeful and optimistic that I will be able to return to a normal active life shortly. I, too, am an athlete and love to be outdoors. As I write this, I am in the mountains with a group of my friends - they are out skiing and I am in bed :frowning: . I would like to see this change sooner rather than later.

With that, I’ll keep everyone posted on progress and surgery! Worth mentioning that while I am working hard to stay optimistic, this has been the most challenging physical and emotional experience of my life, with wide-reaching impact on my personal and professional life, and if I can be a source of strength for anyone in this forum, consider it done. My partner has been there for me through this process, but unless you’ve experienced it firsthand, I don’t know that there’s any way to fully explain the journey.

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Hi JRae16 -

I had some similar symptoms to yours especially when exercising - racing heart (& anxiety) can be caused by an irritated vagus nerve as well as vocal loss - (glad your voice is back) pain at skull base, & swallowing issues). In my case, my vagal response to hard aerobic or anaerobic exercise was to drop my blood pressure which caused my heart to race crazily which would make me feel like I couldn’t catch my breath & was going to pass out. The response would last for several minutes then gradually subside. I also occasionally had this happen when I wasn’t exercising.

I had terrible pain at the back of my skull on both sides as I had bilateral ES. Mine didn’t make cracking sounds though.

The pain & cracking in your cervical spine on inhalation is likely related to the restraint put on movement of your hyoid bone by your elongated styloid & stylohyoid ligament if it has any calcification (which I suspect it does).

The pain in your shoulders & thoracic spine could be caused by an irritated accessory nerve & the popping could be coming from your cervical area. If it’s not able to mobilize naturally that problem can relay down. Trouble holding your head & neck up probably is also caused by irritation of the accessory nerve since it innervates the SCM & (other neck muscles) which is important in helping keep our heads upright.

Headaches can be from the trigeminal nerve or from vascular compression. Surgery usually helps resolve that problem.

Seeing good surgeons & having the styloid & stylohyoid ligament removed as completely as possible should give you your life back. I had my ES surgeries in 2014 & 2015 & am very thankful that I was able to get back to doing the things I enjoy. I hope you’re able to get your surgery date moved to a sooner date. Please let us know.

:blush:

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Thank you so much for sharing this information! This will help guide my conversation with my doctors as I seek to understand what exactly my surgery will entail. This is very helpful!

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Thank you for sharing your story, & it will be helpful for others to read about your post-op experience, plus also how you find the doctors, it’s always helpful to get positive feedback on them also. There’s lots of info all about what to expect (although a bit less about intra-oral, I think) you can search for, plus ideas of what to get ready if you’ve not already looked:

Hope that your surgery goes well, & let us know when you get a date, so we can pray for you.

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Hi can you describe the chest pain you feel? Is it squeezing pressure or sharp? Come on suddenly at rest? Thanks

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Perfect! I will make sure to have all of these things on hand.

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It’s this strange squeezing pressure, coupled with pain where my ribs to connect to the sternum. It feels like they all want to pop right out, but I know they won’t. It’s also not constant, it’s usually more when my throat feels particularly swollen. When I breathe in, the pain radiates down neck, almost feels like it’s in my lungs, but I know it’s not.

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With those symptoms, I’d highly recommend skipping the oral approach and plan to do external.

Just my opinion from my experience, I am no physician ! But I agree Dr. Karni is the most skilled in all this area. I met with many docs and called many many more… probably 20 in total… they all pointed to Dr. Karni.

I had intraoral (Aug ‘19) with Dr. Karni and ultimately …in my case …it made things worse and more needed to be removed to relieve the symptoms through a 2nd external surgery (Nov ‘19). He had said he would pivot to the external if needed during the oral … but he didn’t and truth be told I would never have known if orally “worked” until weeks after recovery. I wish I had just done the external initially. Tonsillectomy was 10x worse pain. Search my name for my stories and posts.

Ps. FYI in my opinion …he totally down played the pain from the tonsillectomy/oral approach. So don’t leave without a liquid pain med rx. There’s no way I could have swallowed the huge pills initially prescribed. Or I’m a wimp!

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This chest pain may be costochondritis. I suffer from it as well. But I do have ankylosing spondylitis. My rheumatologist is part of the same physician group as Dr. Karni too. So they both agree on daily Celebrex for that pain.

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Update: Surgery has been moved up to this Tuesday 2/4. My doctors reviewed my scans (and I have additional scans before the surgery), but their position at this point is that I do not have calcified stylohyoid ligament. Early on it was suggested I may have broken my styloid process (there was a surfing incident about 4 months before ES symptoms started that put me in the ER with inexplicable head pain - they couldn’t figure it out), so it is going in a weird direction (horizontal at one point). They think the directional growth issue may be the culprit. We shall see, I will keep you all posted.

Oh by the way, I do not have tonsils, so if the transoral approach is taken, no tonsillectomy. Premedmom, no way - I had my tonsils removed in Feb last year, and if they had given me anything solid (including pills) any less than 10 days post-op, I would have died. You’re a champ for giving it a go!

Had calls this week with both surgeons, and they are ready to go. Ordering the post-op stuff on Amazon today, and gearing up for next week! More to come.

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By the way, anyone know how soon after surgery you can fly?

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Good you’re getting it sooner! Just to prepare you, from others’ experience the intraoral is pain-wise on a par with a tonsillectomy.

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Man… :pensive: okay. I’ve got my game face on! What a strange thing this is…

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Regarding flying, it would be best to ask your surgeon. However, I’m offering you my opinion based on the experience/information from other forum members:
If you have someone with you to help you, you should be able to fly w/in a couple of days of surgery. Keep those pain meds on board, ask for a wheelchair at the airport & have your companion carry all luggage & walk arm in arm w/ you during boarding.

Many doctors require a one week post op re-check so people who travel stay in town to wait for the post op then fly home. Air BnBs or VRBOs can be much less expensive & more accommodating (i.e. have a kitchen for food prep) than hotels. It’s worth it to go that route for a week long stay. Also both organizations often offer multi-day stay discounts.

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Hi everyone. First day post op, and I feel surprisingly good! Surgery went really well. My doctor came in to visit during preop and was able to feel the styloid process through my throat. With that, he was confident we would be able to do the transoral approach, and we did!

The surgery (with prep) took about an hour. The styloid and a portion of stylohyoid ligament was removed, all in about 2.7 cm (I’m not positive on that number). The surgeons were incredibly competent, capable and wonderful to work with. Dr. Karni performed the resection and Dr. Day was on standby to perform the transcervical approach if it became necessary, which it did not.

The facilities were great, the whole nursing team and post op recovery team was amazing - overall a good experience and I went home same day.

Tramadol for pain, working well. I had ice cream for dinner last night and today some Ensure, some chicken broth and whatever veggies I was able to mash up in the soup, and some mac+cheese. Pain without meds is a 10, and when I take tramadol (6 hour half-life), pain is about a 6. Apparently the incision is very deep, so eating will be a struggle for some time, and swallowing should be good by next week. If I compare this to the bilateral tonsillectomy I had last year, I would say the tonsillectomy was much much worse.

Did fall asleep last night without a wedge bc I was uncomfortable with it, but woke up around 1am gasping for air, so that was not the right move. Slept remainder of night and today with wedge.

I’ll keep everyone posted! I’m cautiously optimistic!

P.s. immediately noticeable that popping in spine and skull base not resolved by this surgery, so likely unrelated and something I’ll have to PT my way through separately.

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Glad that you’re through the op well, & that you’re feeling positive! Keep icing if you can & keep up with the wedge pillow for a bit too- swelling can be at it’s worst days 3-5, so you may have a blip.
Take it easy & God bless

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Hi JRae16 -

The symptoms that remain may improve with time. Not all things related to ES disappear as soon as the styloid & ligament are removed. It can take some symptoms many months to resolve.

FYI - if you have bilateral ES, there may be symptoms that stick around & may even get worse until the second side is dealt with.

I’m so glad you’ve had a good outcome & that your surgery experience was a good one. Hoping you heal quickly. Agreed that sleeping on the wedge pillow was not a great experience. I put a bunch of extra bed pillows on top of mine to soften it & make the angle even steeper. I had the same experience w/ my throat swelling & feeling like I couldn’t breathe. Was afraid I’d have to sleep totally sitting up, but Prednisone was my friend for a week or so & ultimately helped calm the throat swelling along w/ ice, of course!

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Update: Whoa, day 2 and 3 post op presented with an insane headache and I ended up in the ER. So much for an easy recovery. The doctors think I may have had a bad reaction to Tramadol. Tried a few different things to make it go away, and finally succeeded yesterday morning. Even morphine wasn’t working.

My doctor cautioned me yesterday to remember this is a 14 day healing journey and I’m just at the beginning. There are a few similar cautionary posts on here, as I recall, that on day 2-3 the hospital meds wear off. That was very accurate for me.

I’ll keep the group posted! Hoping this turns around soon! My post op follow up is next Thursday 2/13.

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Hi JRae16 ~

I’m sorry for that severe set-back/reaction. I’m glad the headache has ceased. Hopefully you’ll never experience that again during recovery. Your doctor is definitely erring on the optimistic side saying ES surgery is a two week recovery. Most people are just starting to feel improvement at the two week mark. Two months is closer to the truth as far as full recovery goes.

I’m glad the info you’ve found on here re: days 2-3 post op encouraged you so you knew that what you experienced wasn’t totally out of the ordinary even if it was a bit extreme.

I hope you feel nothing but improvement going forward.

:blush:

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Hope that things improve, glad you were a bit prepared for a rough day, & hope you can get some other pain relief, thinking of you…