I’m pretty sure that Mr Axon does the C1 resection himself…one of our members saw him for private consults where he agreed to do her surgery, the surgery was to be done on the NHS, but then he was over ruled & had to turn her down. I’m not sure if any members have had both the styloidectomy & C1 resection done privately through Spire Health I’m afraid…
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@Leah Sure thing! The pain episodes come and go and are usually triggered when I look downwards or to the left. Sometimes I feel a movement around my neck’s styloid area, but not always. The pain starts off mild and gradually intensifies over the next half hour or so. It’s a diffuse pain on the left side of my neck, but it spreads beyond that as it grows. It’s hard to explain, but it feels like someone has put a clothes peg on a nerve. The intensity remains constant for hours or even days, never really subsiding. But when it finally stops, it’s sudden, as if the peg has been removed.
Before I learned to be cautious with opening my jaw, yawning or opening it wide would make the pain even stronger. It’s honestly the worst pain I’ve ever experienced, worse than breaking a bone or anything like that. What makes it even harder to bear is that it doesn’t lessen or fade away like normal pain does. It just keeps burning at the same intensity.
By the way, I just wanted to take a moment to express how grateful I am for this forum. I can’t stress enough how helpful it has been for me already. I can’t imagine finding the right surgeon or making such progress without the help of everyone here. This resource is truly invaluable, and I believe it will play a huge role in helping me get my life back on track. Thank you all so much!
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Sounds awful! I have pain there as well. Clearly not the same as I don’t have the intensity you do. However, I am on Elavil 25 mg a night (for years … to sleep) and started Gabapentin which I would suggest look in to.
Can you tell if it is coming from a certain level in your cervical spine? Looking for what might be pinched… And of course wondering if it (it is what?) gets trapped or tangled up with styloid C1.
Would turning your head to the right help (giving space?). Hope others more knowledgeable than me will chime in on nerves in that area…
Has this been going on for years? Has anyone looked at it for nerve compression? Asking in hopes that it is at a level where a nerve block/ablation could be an option.
Here we have Physiatrists (Physical Medicine and Rehab) docs as well as ‘pain management’ docs (mine is anesthesiologist with pain specialty) who can do nerve blocks/ablation. No idea if Dr. C or others would not advise this prior to surgery (?)…
No rush to answer as always don’t want to add to your burden …
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Can you point me to the “things to ask before surgery” post? 🩶
I feel exactly the same way!
I just wanted to commiserate. Your description of pain is so familiar to me. I live in a lot of pain, chronically, over my entire body — the pain in my neck and face these past six months has been unmanageable and unbearable. I hope you have relief very soon.
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Here you go, @slekeille -
How many ES surgeries has the surgeon done?
Intraoral or external surgery?
Outpatient or inpatient?
How much styloid is removed?
Is the stylohyoid ligament also removed?
Does the surgeon look for vascular compression - ICA/IJV & how is decompression managed if found?
Are nerves monitored during surgery? (FYI the nerve monitors can leave small bruises so don’t be alarmed if you see some post op if nerves are monitored)
Drain tube or post op course of prednisone or ? to help manage swelling?
Risks of this surgery?
Recovery time? (Doctors seem to have differing opinions on this question…best to rely on forum members’ experiences)
Success rate of surgery this doctor has seen among his/her patients?
If I’ve forgotten anything, someone else will hopefully add to the list.
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@Buzz - based on my ES experience & on the location of your pain, I’m guessing your pain is more likely coming from the spinal accessory nerve than from a cervical nerve, & is perhaps igniting other cranial nerves because of the intensity of the nerve firing. Granted, I haven’t asked in which part of your neck the pain originates. If it’s the side (SCM area) then I’d say spinal accessory. If it’s in the front, glossopharyngeal which is definitely a key player in your other symptoms along w/ vagus, if it’s in the back…vagus can cause some skull base pain but there are others that can also do that.
Regardless, I hope you’re able to keep the flares at bay as much as possible by being cautious w/ your head position. I know a surgery date can’t be set soon enough. I hope your appts. in AUS come quickly & go very well for you so you can move forward w/ treatment.
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Thanks so much!
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@Jules, that’s really fascinating! I had the impression that ENTs usually work alongside neurosurgeons when it comes to surgeries on the cervical spine. Maybe it varies from country to country? Thanks for this info!
Thank you, @Leah for your suggestion of Gabapentin. I actually tried that medication before, so I appreciate your input.
To be honest, I’ve been dealing with this issue for many years, and I’ve been prescribed so many different medications that I can’t even remember them all. Here’s a summary of the types of medications I’ve tried over the past few decades:
Treatments tried
- Analgesics.
- Neuropathic analgesics.
- Migraine / cluster headache medications.
- Vasoconstrictors.
- Vasodilators.
- Antihypertensives.
- Anticoagulants.
- Beta blockers.
- Diuretics.
- Corticosteroids.
- Inhaled beta agonists.
- Bronchodilators.
- Cough suppressants.
- Inhaled anaesthetic.
- Leukasts.
- Immunosuppressants.
- Allergen immunotherapy.
- Decongestants.
- Nasal corticosteroids.
- Antihistamines.
- Antibiotics.
- Antifungals.
- Antiparasitics.
- Botox injections.
- Muscle relaxants.
- Sedatives.
- Antacids.
- Laxatives.
- Cervical traction.
- CPAP / APAP.
- Diet modification.
- Weight loss.
- Plus more.
Regarding your question about the source of the pain, it truly feels like it’s coming from the exact spot where the left styloid would be causing compression. Interestingly, I discovered my elongated left styloid in a CT scan because I was specifically looking in that area where the pain originates.
Yes, it it does help, and I spend all day avoiding looking left or down.
Yes, these symptoms have persisted for about 35 years. I’m starting to believe that the left styloid might be compressing the nerves in that part of my neck, and I’m hopeful that surgery could provide some relief.
I genuinely appreciate your concern, Leah! Thank you so much.
Thank you so much!
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@Isaiah_40_31, that’s really interesting! Thank you for sharing your knowledge. I still have a lot to learn about nerves. In my case, the pain usually starts on the left side of my neck.
About a year ago, before I knew anything about Eagle or these topics, I made this diagram to mark the general area where the pain in my neck originates:
And then, before I learned about styloids or Eagle, I made this diagram to visualize what I imagined was a nerve “catching” on my C1 vertebra 
:
It took me many months of studying radiology and anatomy before I could identify the ES in my scans.
@Isaiah_40_31, I really appreciate your concern. Thanks to the advice I found on this forum regarding head position and using ice packs, I’ve been able to reduce some of my daily suffering. I’m incredibly grateful for that!
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@Buzz -
Your neck pain is actually where I had my earliest pain symptoms (also left side) related to ES, & that was what incited my poking around on my neck until I found the a lump under my jaw that ended up being my styloid. I fully sympathize w/ you. Though my pain wasn’t as severe as yours, it was exceedingly annoying & distracting. It did go away after I had my left styloid removed. That’s definitely GN territory.
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I might be wrong! Just one member who had this done didn’t mention any other surgeon involved…
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@Isaiah_40_31, I can’t tell you how happy I am to hear that! I might even risk feeling some hope about mine being treatable 
After decades of suffering, it’s hard to imagine being free of my “constant companion”.
People keep telling me not to “count my chickens”, but you guys have helped me feel hope about my health for the first time.
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@Buzz - The best approach is to hope/expect that some symptoms will disappear entirely over the course of a year after your first surgery, & others will diminish sufficiently to allow you to enjoy your life. Hopefully none will be left that make you feel debilitated. It is time for your “constant companions” to “go jump off a cliff”! 
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I’ve uploaded my contrast CT scan onto dicomlibrary.com for anyone who is interested in viewing it on there, as it can be more convenient to view: https://www.dicomlibrary.com?study=1.3.6.1.4.1.44316.6.102.1.2023061483327188.426357441516006671298
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