Eagles surgery or RFA

General
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Hello,

New here and in a predicament.

In May, out of the blue, I developed a massive migraine that lasted for days and shortly after, I developed an array of symptoms including terrible occipital area pain, specially in two spots bilateral at the base of my skull, under the ears and a few cm in which were painful to palpate, constantly sore/burning but switches from left to right side depending on the day, headaches/migraines, vertigo, eyes disturbances, noise sensitivity, on and off throat pain, scalp and facial sensitivity/nerve pain, on/off pain behind eyes, brain fog, sleep disturbances due to neck pain.

I started out at the spine pain clinic where they gave me trigger point injections which didn’t provide any relief. So we proceeded with 2 bilateral Medial Branch Blocks to see if I’d be a good candidate for an RFA, which gave some relief, but the bilateral spots I referred to above, were still somewhat palpably sensitive/painful, otherwise it did relieve some symptoms such as the nerve pain in the scalp and some pain/burning directly behind the ears best the mastoid area.

In between the time of my first and second MBBs, after some research, I discovered eagles syndrome and decided to go to an ENT, they thought I was crazy at first, but I demanded a ct with contrast and come to find out my left styloid is elongated at 4cm long and right sits just a little over 3.5, both calcified.

I was referred to a surgical ENT who didn’t think my symptoms necessarily coincided with eagles syndrome but agreed to do the surgery starting with the longest side first and if it provided any relief, would complete the right side.

My neurologist said I could do both the RFA and the surgery if I want, but I’m not sure I want to go thru with both. As there’s not necessarily a clear answer which one would work the best and give me the best chance of relief. Since one is much less invasive than the other, to say I’m terrified to go thru with the styloidectomy is an understatement and I’m worried it won’t work and I just did a major surgery for nothing and the styloids were simply an incidental finding and not the culprit of the pain.

I could really use advice - I’m having a really hard time making a decision.

I could do the RFA as soon as next week and the Styloid procedure as soon as the end of the month.. which leaves me with little room to decide and neither provider giving much insight on which would be the best procedure to the circumstances of 1. The styloids and 2. The relief, although not complete relief, from the MBB.

Thank you!

Sara

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@SaraR - I don’t think you should have either doctor operate on you. Your symptoms are those we commonly see with vascular ES where the internal jugular vein(s) are being squashed between the styloid & the C1 vertebra & sometimes at other points along the veins by soft tissues such as a nerve, muscle, fascia, scar tissue, or lymph node. There are cases on our forum - @Jules is one - where only having the styloids resected allowed the IJVs to open more fully & the vascular symptoms reduced or were relieved, but more often a more extensive surgery is required.

We have a list of 6 doctors in the US who we know are very experienced with the surgery you would need to have the best chance at relief from this list of symptoms you gave - terrible occipital area pain, specially in two spots bilateral at the base of my skull, under the ears and a few cm in which were painful to palpate, constantly sore/burning but switches from left to right side depending on the day, headaches/migraines, vertigo, eyes disturbances, noise sensitivity, on and off throat pain, scalp and facial sensitivity/nerve pain, on/off pain behind eyes, brain fog, sleep disturbances due to neck pain.

When IJV compression is present, occipital area pain is caused by collateral veins that develop to try to help the blood flow out of the brain which is what the IJVs are responsible for. These could also cause the pain under your ears, though that could be from your glossopharyngeal nerve which is commonly irritated by elongated styloids.

Deoxygenated blood & toxins flow out the brain through the IJVs. Freshly oxygenated blood flows into the brain through the internal carotid arteries (ICAs). When the IJVs are compressed, the outflow of blood from the brain is reduced which creates high pressure in the brain called intracranial hypertension (IH). It’s the IH that causes migraines, vertigo, brain fog & visual disturbances. Noise sensitivity can also be a result of IH but could be coming from the glossopharyngeal or trigeminal nerves being irritated by your elongated styloids. Throat pain is often from the glossopharyngeal & vagus nerves; scalp & face pain from the trigeminal nerve, but the facial nerve can also contribute to pain in those areas. Pain behind your eyes can have a vascular basis but can also be caused by the facial or trigeminal nerves. I had terrible pressure behind one eye that felt like it would push my eyeball out of the socket (thankfully it didn’t)

[qu.ote=“SaraR, post:1, topic:24548”]
switches from left to right side depending on the day,
[/quote]
It’s not uncommon for the pain/symptoms ES causes to alternate sides, be there one day & not the next, some symptoms come while others go, only to have the others return the newer ones disappear.

From what you’ve shared, I think contacting a couple of the doctors below for a consult would be a good idea. I don’t think you’ll get relief from your symptoms by either of the options you listed above.

•Dr. James K. Liu, 200 S. Orange Ave, Ste. 265, Livingston NJ, ph # - 973-577-2888 Dr. James K. Liu | Top Neurosurgeon in Livingston, NJ OR https://skullbasemd.com
Does telehealth consults.

•Dr Peter Costantino - Institute for Specialized Surgery - info@iss.org - Does telehealth consults.

•Dr David Cognetti, Thomas Jefferson University Hospital, Philadelphia 215- 955- 6760

Does telehealth consults.
Dr. Cognetti is currently booking initial consults in May next year. He gives priority to his cancer patients so those who see him for ES or vES have a bit of a wait.

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It does sound as if you might be wise to get a second opinion about the ES surgery first, have you had a CT with contrast to look at the blood vessels in your neck? As @Isaiah_40_31 has explained already about the vascular symptoms… The styloids can affect the facial and trigeminal nerves, so the MBBs could perhaps have helped temporarily have eased that pain, but if ES is the cause it’s not curing the problem. (There are other causes of TN though, not just ES, some members have had MVD surgery for a blood vessel compressing the nerve, has this been looked into as well?)
There are often situations with members where more than one condition is causing symptoms, and unfortunately it can take time to have imaging done, get more than one opinion and also accept that one surgery might not be the only answer. So we do encourage people to do as much beforehand to make sure they are making the best informed decision…

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I have had a CTA with and without contrast when this all started back in May. I doubt I could find a provider that would be willing to do a 2nd one so soon.

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I also had a lumbar puncture a month ago that showed normal pressure. After my lumbar puncture, I developed a spinal headache and needed a blood patch where they did an additional CT of my head

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I do not have shooting pains throughout my face/head like you would with TN, just a sore/aching pain within my jaw and behind my ears. In regards to that, would I see a vascular provider? @Isaiah_40_31

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At this point, I’m just not sure what sort of doctor I should see or what I need to do that would help to get the ball rolling prior to getting a second opinion from the providers listed in the post. Is there any routes you would recommend prior? I live in Minnesota and have very little options before getting a second opinion from a doctor outside of MN. @Isaiah_40_31

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@Jules @Isaiah_40_31

And I should mention the provider that would be doing my procedure here is Dr.Galer who and I quote “specializes in head and neck surgery and oncology, including head and neck cancers”

The procedure would be done externally.

I don’t have my CD of my most recent CT w/contrast, so I wouldn’t be able to post the 3D images and the 2D images that I am able to see, I wouldn’t know what I’m looking at. I’ll get the CD this week and attempt to figure out how to convert them to the 3D.

I assume it wouldn’t be helpful to post the 2D images at this time? In the meantime, here is my report from my most recent neck w/contrast which was done on 8/11.

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@SaraR - A CTA typically only looks at the arteries, & the radiology reports you posted indeed indicate that’s the case since there is no mention of anything about the veins in your neck. Your IJVs should be visible in the CTA but will be more “shadowy” since the contrast injected was done during the arterial phase of the heartbeat. A CTV times the contrast to enter the veins during the venous phase of the heartbeat. Since your symptoms are predominantly pointing to an issue with your IJVs it would be worthwhile asking to get referred for a CTV. If your doctor needs convincing, we have links to many peer reviewed medical research articles on our forum, & you could print off a couple where the patient has symptoms similar to yours to take to your doctor. Here’s a link to the list of research articles on our forum:

TN & all other neuralgias manifest differently in different people. The pain isn’t always shooting. It can be deep & achy, feel like intense pressure, burning, tingling, or numbness. Nerves are inconsistent in how they complain. :wink:

Most of the doctors on our Doctors List are skull based, head & neck cancer surgeons. There are only a few, however, who specialize in ES surgeries with the jugular vein decompression component. A number of the doctors who are aware of IJV compression related to ES will do styloidectomies hoping that’s enough to help the IJV(s) reopen, but there are times, the patients who go that route eventually need revision surgeries specifically for IJV decompression because the C1 vertebra was more intimately involved w/ the compression than the styloid(s) & wasn’t dealt with the first time around.

You can take screen shots of your images you can see & upload those here. We can help you identify what’s in them. There are many pictures that have been posted on this forum so it would just be a matter of finding some among those you have that look similar. There’s no need to fool around w/ getting the CD & converting the images if you have access to them on your computer already.

2D axial images at the level of C1 are very helpful & 3D sagittal (from the side) & frontal (from the front & back) images are too.

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@SaraR I totally agree with @Jules and @Isaiah_40_31 in regards to imaging (because you really need to look and venous compression specifically) and about choosing the right surgeon. If you have VES you want a surgeon who has performed this delicate surgery frequently and who knows to look for different points of compression beyond the styloid. It’s not a surgery you want to have to have twice.

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@Chrickychricky @Isaiah_40_31 Thank you for your insight.

So just to clarify, what I’m going to be asking my provider for is a CTV of the neck? Is there a more specific medical term for it that I should be asking for? I want to ensure I request and get the correct imaging.

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A CTV of the neck is fine…

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