3D render added to "primary symptom: ear pain?"

General
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I was diagnosed with glossopharyngeal neuralgia sometime in mid 2023.

My symptoms started in August of 2022. My primary symptom is and has always been ear pain. Deep throbbing pain in the ear that sometimes changes to burning that sometimes changes to raw soreness. I visited the emergency room, and ENT, a maxillofacial surgeon who took a panoramic scan of my bite, an ENT, an audiologist, an MS- specific neurologist and was finally transferred to a neurologist who believed me when I said I had geniculate neuralgia due to the primary and exclusive ear pain.

When I requested to see a neurosurgeon, the fiesta MRI showed a clear compression of the glossopharyngeal nerve coming out of the brain stem. This neurosurgeon was Dr. Brian Jian. Together with Dr. Ballough at Kaiser, Morse in Sacramento, he performed a microvascular decompression surgery on February 28th of this year.

I had a second surgery on April 1st to remove the bone plug and titanium plate over the hole in my skull which had become infected and I was on IV antibiotics through a PICC line for 6 weeks.

I still have significant ear pain. My symptoms do not appear to have abated very much since the surgery nearly 3 and 1/2 months ago. I had a follow up MRI done last week. Shows that the the obvious nerve compression has been resolved. I requested a CT scan for eagle syndrome and found that I do, in fact, have calcified ligaments and that they are significantly longer on one side than the other (25 mm, 12 mm) They are longer on my symptomatic side.

I discussed all of this with Dr. Jian earlier this week. We are challenged with deciding whether or not to treat what continues to be glossopharyngeal neuralgia from an arterial compression or to consider my symptoms part of an ES diagnosis. The reason that we are reluctant to consider it ES is that I don’t have any other symptoms except for ear pain. I have never had throat or swallowing issues. My jugular vein is not being compressed.

He is going to do more research and ask that I join this group to chat with other members and try and find experience or research papers that show whether or not ear pain can be an exclusive symptom of ES.

I am on 1800 mg of gabapentin and 1200 mg of oxcarbazepine daily.

In an effort to have a more clear path, I have decided to begin titrating my medications to bring my symptoms to the surface so that they are more obvious. We hope that this will help us determine a more clear diagnosis.

I would be so grateful for any and all comments and questions. Thank you very much.

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First off, great job with the 3D images. Thank you for that.

The calcification on your stylohyoid ligament is quite thick even though it’s not immensely long. Elongation of the styloid &/or stylohyoid ligament is only part of the complex equation that can make up ES. There are times when the length of the styloid or calcified s-h ligament is not as significant in causing symptoms as are other features such as the thickness, curve, angle, or how twisted/pointed the calcification is. In your case, your s-h ligament looks like a little sausage in your neck so it may be the thickness that is causing it to irritate your GPN if it actually is.

As @Jules noted in her reply to your previous post, there are manual tests you can use to try provoking symptoms to determine the role the calcified ligament may be playing in the nerve pain you have. If you note the symptoms/pain get worse after poking around, then it’s likely that having your calcified ligament removed will allow your GPN to heal & symptoms will reduce or disappear.

You also noted that your GPN is still being compressed by an artery (“We are challenged with deciding whether or not to treat what continues to be glossopharyngeal neuralgia from an arterial compression”). This could be the problem instead of the s-h ligament. I expect surgery would be required to move the artery away from the nerve for you to get freedom from the GPN symptoms that compression is causing. I don’t believe this can be taken care of via external or passive therapy. I’m sorry it wasn’t dealt with when you had your first surgery.

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Thank you for your reply. I wanted to clarify the point that you brought up regarding the statement I made “what continues to be compression”… What I meant to say was we’re trying to determine is wether my issues are coming from a compression that we DIDN’T resolve with the surgery and are unable to see/pinpoint, or, if we need to further explore the possibility that they’re being caused by ES.

I can’t figure out how the little hot dog of bone might interfere with my nerves. In the angle that looks upward through the lower jaw, it does appear to interfere with a small blood vessel but the jugular seems clear of it.

I am frustrated that this doesn’t seem to give us any clearer directions.

Also, I’ve been unable to manually generate any pain through manipulation.

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Thank you for the clarification. For your pain to continue being so bad, there must be something irritating your GPN, & the logical culprit would be your “hotdog” bit of ligament (I like that better than my “little sausage” comparison :wink:)

As you can see in the image below, the GPN runs right through the area where your stylohyoid ligaments are thus it makes some sense that the hardened bit of ligament could be rubbing up against a section of the GPN & causing your symptoms. I think it’s worthwhile considering having the calcified section of your s-h ligament removed to see if that makes a difference. It won’t be as invasive or difficult a surgery as the skull base nerve decompression was.

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This is so helpful! Thank you!

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Very frustrating for you! It does still seem quite early to decide if the surgery hasn’t been successful, like I said, we’ve found on here that nerves can take months, even a year to heal from compression/ damage to them by the styloids, but maybe it’s different with compression by a blood vessel, idk if that would be enough to damage the nerve sheath?
Just to add to the confusion, the Geniculate nerve can also be affected by ES (and also from blood vessel compression), which causes ear pain…has Dr Jian ruled this out?

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Good call, @Jules! You do a great job of keeping track of the more obscure causes of some of the symptoms that are also seen with ES.

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My surgeon “talked me out of” having geniculate neuralgia because I didn’t have HFS. I will readdress!

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What does HFS stand for, @EmilySyndrome?

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I’m so sorry! Hemifacial spasm. Compression of the 7th nerve almost always results in HFS. the geniculate/nervus intermedius (NI) is so close to the seventh nerve, he says, that it’s nearly impossible to have geniculate neuralgia without HFS. I asked about severing the NI, which is what some people do, and he refused. It causes deafness, permanent eye problems, and balance issues.

I’m sure I could find a surgeon that will do it, but I am also very cautious about it.

If the geniculate pain can be caused by ES, in going to readdress this with him.

Thank you!

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Thank you for the meaning of HFS. I looked it up & could only find Healthcare Finance System or Hierarchical File System (for computers) :joy:

The Facial Nerve (CN VII) is almost always irritated by elongated styloids/calcified stylohyoid ligaments because it exits the skull very close to where the styloid is attached to the skull base on each side. That’s one reason surgeons won’t cut the styloid back completely to the skull base. “Skull base removal” is not actually that as a stub of styloid (+/- 1mm) is almost always left behind to protect the facial nerve. As with the GPN, the facial nerve has many branches as do many of the cranial nerves & thus irritation of a particular branch will determine which part of the face is affected.

Here is an image of the facial nerve which came from this site: Anatomy of the Facial Nerve – Oto Surgery Atlas

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You guys are so amazing! I just can’t even thank you everyone for all of this.

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Yes, left ear pain was significant for me.
Left ear symptoms: Pain, under water feeling, loss of hearing, random itchiness, felt like water was dripping into the ear if I laid on my left side, tinnitus - echo like listening to a sea shell plus pulsative (heartbeat).
Left ES surgery (removed styloid, scar tissue in neck area, and calcified ligaments, ballooned the jugular vein) helped with the left ear pain. The ear pain didn’t go away 100%.
Right side ES surgery helped further diminish the left ear pain. ENT confirmed (as this group as) that symptoms on one side sometimes clear up when ES surgery is done on the opposite side.
I’m still trying to recover from right side ES and have a suspected complication (blocked salivary gland) so I still have what feels like intercranial head pressure (general pain and tinnitus) but the left ear does seem to be better.
Pretty crazy how everything is intertwined and how one side effects the other.

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Thank you so much for your through reply! The surgeon that in working with says he never does unilateral. ES surgery for that very reason. Even if there’s only symptoms on one side, it often clears up more when both are remedied.

Is your pain constant or debilitating? Did you have trouble with sound or cool air, vibration, head movement, etc?

This helps me. Thank you.

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I hope that you get the salivary gland pain sorted, and that you keep noticing even more symptoms go as you heal :hugs:
Good that we have confirmation from an ENT that the symptoms can still remain until after both sides are done!

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That would be a good survey unilateral surgery vs bi - who had the worse recovery? My hope is that it would show bi is viable and worth it.
Mine were done 6 months apart.
My dr claimed it could be too hard to heal from getting both done at once (wouldn’t be able to eat,…) plus you might not need both done and won’t know where you stand for at least 6 months post surgery.
Has anyone heard of someone not needing the other side done?
hmmm…I wish both were done sooner (same time or 3 months apart)?
I feel like it becomes a “lift all boats” situation, your body does more damage to itself trying to compensate for the messed up side the longer it stays that way.
re symptoms…
Before surgery - debilitating.
post surgery - not debilitating but head pressure still noticeable. The jury is still out, I need more time and to figure out the swelling on the neck (salivary gland blocked?).

Before surgery I couldn’t sleep on my left side (the ear would throb). Cool air was never an issue. I couldn’t have headphones on (especially the left). Head movement mattered (couldn’t sleep on left side,…). I had bouts of dizziness (OTC Bonine helped). Hearing tests showed the left was messed up (I lost hearing) and the left ear drum was hyper sensitive (couldn’t handle a directed puff of air test).
Post 2nd surgery- my pain is not debilitating. I still lift the headphone off the left side now and again and get some random left ear itching/pain though. I can sleep on the left ear now.
I have numbness on the right jaw post surgery. It seems to be getting better. The dr said to put OTC Biofreeze on it.
The more general head pressure pain and tinnitus is still a constant though.
I’ve had anosmia (no taste/smell) the whole time as well. Everything (including ear) ramped up ~6 years ago following a double viral and mold hit. There have been some break throughs (post 2nd surgery) in smell/taste but they are fleeting. Dr is hopeful ES surgeries will help with the anosmia (since it brings down the inflammation, propensity for sinus infections, excess fluid creation in sinus, swelling,…).
Dr (Hepworth) wouldn’t do any testing yet (to make sure the veins were open). He claimed 6 weeks out was still too soon. He does jugular ultra sounds (that show the blood flow) to test for ES.
I’ll ask if he has a “healing road map” figured out. He mentioned before different parts take x time to heal, what to expect,…
So appreciative of this forum and the information exchange. It has been a lonely, painful road and having others to learn from and share with has helped.

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With my history of complicated MVD, post-op infection and second surgery, my surgeon is confident that this procedure will be far less challenging for me in terms of recovery. However, they told me the recovery from the MVD wouldn’t be too bad. Good Lord, were they wrong!

My calcified styloid ligaments don’t appear to be as bad as some that I see in this group. Part of this whole journey includes my propensity for self-judgment and telling myself that I’m just making stuff up and I should just deal with it. He told me that a side effect of all this is that one can go crazy but I just feel so bad about putting everybody through extended recovery and the challenges all of it.

I’m definitely going to wait until 2025 to consider ES surgery, but it does sound like it couldn’t hurt. (Fingers crossed)

I want to ask if any of the female members notice that the symptoms get worse when their estrogen drops? Mine, invariably, ramp up intensely in the days before my menstrual cycle and on the day that I ovulate. I think this has something to do with our pain sensitivity increasing with hormone changes. I am also a migraine sufferer. I find it very interesting that I have had no migraines since my diagnosis.

Thanks, all!

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First off, it’s great news that your migraines have stopped since your diagnosis. I hope they stay gone!

Which surgeon are you seeing, @EmilySyndrome? Dr. Hackman is the only doctor on our list who routinely does bilateral ES surgery. It would be nice to add another doctor who does it as well.

Styloid/ligament length isn’t the only aspect of the styloids that can cause symptoms. How thick, curved, angled, twisted, or pointed they are can sometimes be more significant than their length. It can be hard to note these additional features in a CT scan due to the angle of the styloids in the images. That’s to say comparing your styloids to others you’ve seen on our forum is like comparing apples to bananas. They’re both fruits but they look quite different.

This has been discussed on our forum intermittently & the answer is YES. Here’s a thread that you’ll find interesting:

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I see Dr.s Jian and Ballough at Kaiser Morse Sacramento. They were both present for my MVD and apparently are both also somewhat versed in this field and are mentioned in this community and on the list of surgeons.

Dr. Jian Is the only one I’ve spoken to about this post-surgical development of es. He said that only once did he do a unilateral surgery and found that the recovery time with continued symptoms were basically just a waste and that he should have done the second side at the same time because only then did this patient get true relief despite the pain being unilateral. Very interesting. He also said that in my case he might break his rule and do a unilateral surgery, but upon word from this community, I think I would opt for bilateral when I’m ready.

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I think from reading members’ experiences on here it does sound as if the bilateral surgery is tougher to recover from, obvs having my 2 surgeries separately I can’t comment personally. Swelling can be an issue so that’s why many doctors don’t do bilateral surgery.
But equally having separate surgeries isn’t ideal & I can totally understand why the idea of doing it once & getting it over & done with is appealing! Plus as you say @juliezuber , more damage can be done by the styloids waiting in between surgeries…
I’m sure we have had some members who have just had the one side done- some only have one problematic styloid so having that out has helped remove symptoms. But we’ve sadly had some members whose symptoms don’t resolve with the one side done & then their doctors have declared that the surgery obvs hasn’t helped so no point doing the other side!
@EmilySyndrome , I have a relative who had MVD surgery last year for TN & she found the recovery awful too, & was very shocked that she hadn’t been warned beforehand, please don’t think you should feel bad about putting people through extended recoveries!..she has had a complete success from the surgery though, so I think looking back she feels it was worth it. Hugs to you :hugs:

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