Extra question: Have there been ES forum members whose symptoms worsened after surgery, or who developed a permanent neuralgia with even worse pain?
Ultrasound can be helpful, but something to keep in mind is that the greater horn may be scraping the artery wall and irritating nerves but not causing compression. So ultrasound may or may not show compression regardless of you experiencing pain.
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The IJV compression severity vs symptoms has been discussed quite a bit as some members donāt have much compression but are very symptomatic, as you say it does depend on collaterals, and some people can compensate for a while & then suddenly become symptomatic.
The nerve blocks do help some people, but arenāt reliable enough to use as a diagnostic tool really. A sensible idea to be cautious with AI diagnosis, but I agree itās helpful to give you an idea of what to ask doctorsā¦
We have had a few members who have had symptoms worsen after surgery- usually itās either because their surgeon wasnāt very experienced and didnāt shorten the styloid off, or that they didnāt monitor nerves. There are some risks of nerve damage during surgery, the facial nerve & spinal accessory nerves are the ones commonly affected, which can cause facial weakness or numbness, or shoulder pain/ weakness, but this usually resolves with time & PT. We have occasionally seen members who have complicated medical issues like other vascular compressions, auto immune conditions, MCAS etc who do feel worse after surgery, but itās worth bearing in mind that some do improve after a while but donāt come back to share this later!
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Yes, ultrasound would be just for checking the blood flow. Nerves in the head are much harder to figure out, since everything is connected to everything, it seems. But, if scraping irritates any nerve, and this is triggered by swallowing, then swallowing should trigger stronger symptoms, so Iāll keep an eye on that causeāeffect.
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That is my biggest fear, as far as any surgery.
On paper, it seems like a win-win, because not doing anything just keeps the pain status quo, while doing something to alleviate it (even partially) is an improvement. But, if the condition worsens, then the equation is out the door. It does seem nerve monitoring will be a must for this surgery, assuming I am to get it.
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I want to also add that ā up to recently ā I was on 1800 mg Gabapentin and on 10-30 mg amitriptyline (nortriptyline), which made me slower (dumber?) and more tired. I dropped amitriptyline altogether and I lowered Gabapentin to 1200 mg. A bit better.
These meds are āband-aidsā that ā for many ā mask the pain. But, they do not fix anything. The underlying issue remains and may even get worse. I am working to drop them all the way to zero, if I can handle that.
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Have you tried using ChatGPT to assess your imaging?
In my personal experience, itās been remarkably accurate. Itās not great at annotating images. To do this I use the Snipping Tool in Windows, I snip the slices I want to review and drop them into ChatGPT. It can handle about 10 at a time. I usually mention what view and type of imaging it is (though it often recognizes that automatically). I ask if it sees anything abnormal or to focus on specific areas. Itās been absolutely pivotal for me in dealing with the medical world.
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I will try, thank you. I have found it lacking when it comes to diagrams, but maybe itās better at interpretingā¦ Bit concerned that my CT slices may become public domain, but desperate timesā¦
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If you choose to use ChatGPT, @sbincamp, remove your personal information from images you submit first if thatās possible. That will at least give you a modicum of privacy.
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I need to comment that 1200 mg of Gabapentin daily is pretty significant. As your pain is acute enough it takes that much Gabapentin to keep you comfy, entertaining the idea of surgery is probably worthwhile.
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Iāve been reflecting on your annotated facial pain map, it mirrors almost exactly where I experience 24/7 nerve pain accompanied by numbness, swelling, and pressure.
I had a salivary stone in the parotid gland that caused horrendous pain, especially in the blue zone you marked. When the stone finally made its way out almost five years later, I immediately stopped clenching on the right side, but that pain continued, especially through the blue areas.
Eventually, they found a blocked accessory parotid duct. The opening kept sealing over, presumably from swelling, which I now think was caused by Eagle Syndrome. By the time I had the parotidectomy, they couldnāt access the main duct at all. After surgery, the pain near the ear improved, but the rest of the facial pain remained. It can be excruciating, I completely understand wanting to escape the pain.
It may be worth considering salivary gland involvement. And just a note when I saw the specialist he told me I did not have classic symptoms and was going to turn me away until I begged. He performed a Sialendoscopy and found the blocked accessory duct. A Saliogram showed the accessory gland but radiology insisted it wasnāt blocked and radiology did not see it on MRI but it was there and blocked.
I have come to believe that inflammation from ES can contribute to many issues that donāt fit neatly into standard explanations. I noticed in one of the threads that another member also had a saliva stone, maybe they can share their experience for over-lapping symptoms.
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I agree with you about inflammation of ES, I had a salivary gland stone which was around the same time that my ES symptoms ramped up, I have some symptoms of Sjogrens syndromes too but this hasnāt shown up in a blood test. Other members have had autoimmune conditions alongside ES too, swollen lymph nodes are very common too!
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I gotta say that even 1800 did not really do much. This is why Iām slowly dropping it. I want to see what the TRUE pain is, not what this masking is hiding. I can always go back up, but at least Iāll know the ābeast.ā
I have dismissed this, because the blue zone is not always in huge pain (and I assumed blockage will always be in pain). It just flips between various types of pain.
Itās mostly in dull (blue) pain and sometimes in burning (red) pain.
But, what disables me the most is green ā the sensitivity to cold. I cannot go anywhere without having to protect the green areas. A/Cs are everywhere, and cold weather is more and more present. Green is my true beast. If green areas get inflamed, they become red (burning pain) and than itās onto torture.
Iām skeptical of salivary blockage, but I will mention to a doctor.
Give you an example of something I have to do, but it messes me up good ā shower. Taking a shower wets the ears, which affects the green areas ā which then become red and burning. No matter what I do, I cannot avoid this one.
I cannot imagine travelling while I have the green cold air sensitivity. Itās the think that depresses me the most 
This is SO hard to troubleshoot. Iām an engineer, and Iām at my witās end .
But, I can at least say, with some certainty, that neck pain is the calcification.
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I can only imagine how difficult it is for you atm, it sounds awfulā¦one member posted a research paper about how memantine is apparently good for TN (sorry if Iāve mentioned this already), although I donāt know if anyone on here has tried itā¦
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Thatās brutal, Iām so sorry youāre experiencing this kind of pain. Facial pain is incredibly hard to deal with and is truly debilitating.
The blue zone not always being painful actually fits with a salivary gland issue, the glands usually hurt more when theyāre producing more saliva. At other times, it can just feel like dull pressure and then flare into burning pain when inflamed. It can definitely overlap with the nerve pain, too.
I am glad you will mention it to your doctor, even if it turns out you donāt have a salivary problem contributing to the pain, mentioning it could help them think of other possible causes and testing.
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Iām also sorry to hear about how cold affects you especially as weāre heading into winter. I hope youāre able to get a consult or two under your belt before the weather gets really cold. Do you have any family or friends who can help you travel if you need to go any distance to see an ES specialist. That way you can focus on keeping your face at a comfy temp & not have to worry about traffic/navigation.
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I think weāll try and see if family can join. If not, Iāll have to try, anyway.0
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Observation:
Took a vaccine that I had a strong immune reaction to. Woke up in the night shivering. Managed to get myself to kitchen, ate a piece of bread and drank ibuprofen, made hot tea. Made the shivering sloowly stop, over the course of 90 min.
When shivering started, my facial pain was a zero. My shoulder pain (I pulled it) was present as usual. As the fever subsided, shoulder stayed the same, but facial pain returned.
According to AI (once I described ths), it is nociplastic pain. Central nervous system sensitization.
Neck pain was also present always, so Iām fairly certain that is the ligament. The rest is likely some form of central sensitization + referred pain.
This is like that old song from C+C factory: āThings that make you go āhmmmmā¦āā
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