Sitting Craniocervical MRI results

It sounds like you have a good plan in place, AmbyNYC. Dr. Hepworth is very experienced & will definitely do what he thinks will provide the best results for you. I’m sorry, but I don’t remember if you have bilateral ES. If so, there is a good possibility some of your ES symptoms will not go away after your first styloid is removed. In bilateral cases, both styloids can contribute to some symptoms while others are caused unilaterally. It has been our experience that after one styloid is removed, the symptoms caused by the remaining styloid can begin to ramp up. I’m telling you this so when you & Dr. Hepworth evaluate how you’re doing 2-3 mos post op, if you still have pain/ES symptoms, the remaining styloid is likely the reason.
I do hope that over time, your neck instability & cervical issues will be properly treated so you are more comfortable. :hugs:

Sounds good! Hope that you don’t have to wait too long, & that you get good results!

Hi NYC,

Since they mentioned Chiari and neck instability, the Ehlers Danlos Syndrome (EDS) is like a double whammy with ES. I also have TMJD. Ct Scan just does slices and interpolates (estimates in between) for length of styloids and ligament calcifications. It is better to have the specialist read the scan as often the radiologists have limited expertise. My surgeon didnt agree with radiologist report and even found after surgery it was longer that what he even thought.

I have EDS and have had decades of neck instability although I didnt know until around 2012. I did have a whiplash in my late teens that probably didnt help. Ive gone thru years of physical therapy, occupational therapy, massage, acupuncture, cranial sacral work, osteopathic work and a variety of injections. In my 30’s docs gave me injections of proliferon (prolo) therapy that is supposed to tighten up the loose ligaments. I just had my ES surgery and need to do other side. I will return to my OT who has given me very mild strengthening exercises for my neck. If you have neck laxity, there is a PT who has developed a protocol (can get book online) for EDS as it requires a PT/OT that knows what they are doing. Hypermobility and loose ligaments are another animal and needs to be approached differently than standard pt approach as you probably already know. Ive considered getting a cervical collar to help with my neck instability…especially to wear at night as often I end up with my neck is positions that trigger massive pain and cause my neck to go out of alignment. So far my neck has not bothered me much since my surgery however my massage person says the left side (shoulder / neck/skull) still very tight. I’m hoping with regular massage (weekly) I can get this all to relax and retrain after years of the body tensing up from ES on that side. Good luck with your surgery.

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This is great to hear - can you point me to any documentation/studies that talk about this? TN2 is one of the biggest symptoms in my household!

Here is a link to an extensive post Jules wrote in 2016. It includes links to several different research articles including one for TN related to ES. I hope this is helpful for you.

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There’s info in the Newbies Guide Section- Common symptoms & what might cause them; here’s some info for you:
‘Symptoms are divided into two groups. The first group of symptoms, are characterized by pain located in the areas where the fifth, seventh, eighth, ninth and tenth cranial nerves are distributed and occurs in most of the cases after tonsillectomy which may have been performed many years earlier.’ (Dolan, Mullen, Papyoanou).

‘Pain following tonsillectomy is presumably created by stretching or compressing the nerve or nerve endings of cranial nerves V, VII, VIII, IX, or X in the tonsillar fossa either during healing (scar tissue) or shortly thereafter.’ (Langlais RP, Miles DA, Van Dis ML. Elongated and mineralized stylohyoid ligament complex: A proposed classification and report of a case of Eagle’s syndrome, 1986).’
And: ‘Trigeminal Nerve branches (CN V) are also in this region- Eagles Syndrome is listed as a possible cause of Trigeminal Neuralgia (TN)/ Non-Neuropathic Facial Pain . TN causes two types of symptoms- Type1 is sudden intense, electric- shock like, stabbing, or burning pains which can also cause muscle spasms , and Type 2 is a constant aching, boring or burning pain .’

‘The Trigeminal Nerve has 3 branches, which carry sensations of pain and touch. The branches go along the lower jaw, into the lower teeth and the temple region; the upper jaw, teeth, cheek, part of the nose and just below the eye; and across the scalp, forehead, and the eye. The motor branches of the Trigeminal Nerve also innervate muscles for chewing, and sensory branches go to the mucous membranes of the eyes and nose, and symptoms of damage can be dry eyes and mouth. (http://calder.med.miami.edu/pointis/tbiprov/MEDICINE/sense1.html1 ).’

‘I have seen research showing that it is the lower branch (Mandibular) of the Trigeminal Nerve which is most commonly affected by Eagle’s Syndrome. In one documented case, the TN pain the patient was suffering was eased by a partial removal of the styloid, but then returned. The patient later had a full styloidectomy, and again the pain eased, before returning years later, and with more severe TN. The researchers state ‘This suggests that trigeminal neuralgia often exists in a prodromal state characterized by dull constant jaw pain, particularly if there is a distal structural defect to exacerbate the pain. The underlying abnormality that eventually causes classical trigeminal neuralgia may be present in an early form. This early form might not be capable of causing facial pain on its own, but might sensitize distal trigeminal nerve branches to local compression or stretching. It might sensitize the alveolar nerves to pain in the jaw from dental problems. (or in our case from an elongated styloid process and scar tissue.) Eagle syndrome… may also be associated with pain in a trigeminal V3 distribution.’

Here’s a link to the whole piece:

Hope this helps!

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It does! Thank you both for replying so quickly. My family member has Type 2 TGN on the CNV2 branch (maxillary, one side worse than the other). They have been diagnosed with both Eagles and Chiari, neither of which neatly fits with the location of the pain. We’re trying to figure out which is least “unlikely” - we can definitely get either surgery as there’s pathology in both locations. Ugh.

Not something to look forward too…hope that the right decisions are made. Best wishes.

Your husband’s situation is challenging. Hopefully having consults w/ the appropriate specialists will give you clarity as to which direction to go for his treatment. I will pray for that. :blush:

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Thank you both. Have either of you seen any other postings about facial pain and headache based in the maxillary branch of the Trigeminal Nerve?

Jules is much more well-versed in what research papers are available than I am. I’m sorry to say, I don’t know of any that specifically deal w/ that branch of the TN. If I become aware of any, I will forward links to you.

You might find this article interesting:

And these discussions might be helpful:

There are a lot about TN, not necessarily just the maxillary branch. You can have a search of more if you need more info using the magnifying glass icon…I get the aching, constant pain, but in all 3 branches. It’s improved a lot since surgery, but not gone completely. Also Ben’s Friends have Chiari & Facial Pain groups if you want specific info on those, here’s the links if you’ve not seen these groups:
https://www.livingwithfacialpain.org/
https://www.bing.com/videos/search?q=bens+friends+chiari+malformation+group&docid=608048265157806659&mid=5D0C85A7D826322B00A95D0C85A7D826322B00A9&view=detail&FORM=VIRE
Hope this helps!

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I got my head CT from last year converted to a 3D CT by a fellow who knows the software and charges a nominal fee. He measured the right styloid at 40mm and left at 38mm.

Ouchie! They are long & spikey!
How are you doing?

Been having some headache relief with cranio-sacral massage, and my pain Dr is refilling my Fiorinol. Seeing Dr. H this week and hoping to get scheduled for right side styloid surgery. Been bugging everyone in his office for 3 weeks as I know my EDS buddy got a surgery date.

For the neck instability I have a consult with head of the spine center on 6/23, and telehealth visits with two EDS knowledgeable neurosurgeons on 7/13 and 8/10.

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Hi AmbyNYC -

Good for you for keeping after Dr. H’s ofc staff. I hope they get your surgery scheduled very soon.

I agree w/ Jules - your styloids are very long & spiky! I don’t know if you have any images of your hyoid bone but seeing if there’s any calcification of the styloid hyoid ligament at that end would be good, too.

Please keep let us know when you get a surgery date.

This is a closeup of the right side, if that helps:

It doesn’t cover down to the hyoid bone so we can’t see if there’s any calcification of the ligament further down. Something to ask at an appt…

Hi NYC,
Im a huge believe in cranial sacral as it has given me so much relief with my neck instability! Im particularly having alot of pain and rock hard tightness in the temples and my TMJ in a big flair after surgery. Im going in Monday to get some botox in the temples in hopes it will relax the temporalis muscle. Ive been getting massage weekly for about a month now and its just not knocking it down enough. Im also requesting steroid shot in the jaw. Unfortunately, I cant take nsaids, tylonal or aspirin products. It sounds like you have yourself lined up well to take care of this. Please share any insights from your consults on the neck instability. Good luck w all your appts.

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I’ve been doing craniosacral massage and it’s helping to minimize full blown headaches. It’s funny how now I can feel when the base of the skull feels “congested” as it feels “clear” after the massages.

The CO orthopedic surgeon confirmed that my neck is moving 5.5mm when nodding up/down. Normal is 3mm, surgery is indicated at 4mm+. He wants to measure side to side movement so is sending me for a rotational CT. I don’t intend to do surgery here, but it’s helpful to know that even a neck surgeon outside of the CCI specialists is seeing CCI as the diagnosis and recommends the fusion surgery.

The NY EDS/CCI NS has invited me to NY for an invasive traction test on 9/30. That will show if there is a certain position where counter weight attached to my skull that lifts the brain stem off the odontoid and symptoms improve. If so, then they’ll x-ray that position and schedule surgery to fuse it that way. Flights are booked, hotel is reserved, my husband is coming with me in case I have a bad flare up after the test. Kid is going to stay in CO with his parents and we’ll isolate for 2 weeks before to minimize chance of Covid exposure, her school just announced all online program for beginning of school.

I meet with MD EDS/CCI NS on Monday, for 2nd opinion. He will probably offer to do fusion surgery but I prefer the NY NS’s approach to anchoring the fusion to the condylar bones instead of a hinge plate to the base of the skull. This one does traction during surgery to guess what the neck position should be, so I’m more interested in the traction test where I can tell them what position relieves symptoms.

Dr. Hepworth is hoping that the neck fusion will lift my neck angle from 136 degrees to 150-170, and that angle change may reposition the styloids enough to get them off the jugulars and not need ES surgery. He’ll follow up after all of this to see what I need. He does have his hands full with the EDS/ES patients I know of in CO!

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