Treatment timeline

[Jules]

Yes, the ear & head pressure improved massively, it was from jugular compression.

[etherealcataclysms]

Ah yes! I haven’t had a top doc review my images yet, but someone in the FB group did for me and saw jugular compression on both sides, and I have quite significant external carotid impingement on my problematic side.

I’m really hoping surgery brings me some relief, feeling like I am choking constantly has truly put me in fight or flight consistently. I’ve had to retrain my body that I’m okay.

[juliezuber]

I hope surgery helps.
Hepworth said you really need to wait at least 12 weeks post surgery to evaluate things.
I think getting both sides done makes sense in general since the strange inflammation and strain (from calcified ligaments, elongated/weird styloid, stressed veins/arteries,…), etc… can refer to who knows where (either side?).
I also had popping in my left ear and neck in general (with movement) as a symptom. That went away with surgery but came back 2.5 weeks post (bummer). Could be TMJ joint issues. I hope it’s not infection in the joint or bone somewhere.
I wear a mouth guard at night as the head pressure causes clenching. I think I’ve had teeth issue due to ES (not the other way around).
Like the neck issues we all seem to get, it is hard to unravel root cause and how to fix the collateral damage.

[etherealcataclysms]

Yes, I believe I will likely get both sides done, starting with my most problematic side and the one with all of the inflammation. Unfortunately, I inadvertently caused TMJ issues in the same side trying to constantly pop that ear!

Here’s my dagger!

[juliezuber]

Wow, great image. That can’t be good. Hang in there.

[etherealcataclysms]

Thanks Jules! I’m also having lower jaw surgery later this summer, I’ll make sure to keep this forum posted over my surgeries because I know there’s a lot of jaw overlap here.

[Isaiah_40_31]

Your styloid is thin but very long more needle like but those are just as bad as the daggers. It’s interesting that your hyoid bone looks to be in 3 segments. I don’t know if that’s just due to the angle of the imaging or if it hasn’t fused yet.

Also of note is that you have military neck which has already been mentioned. Working at getting your lordotic cervical spine curve back could help reduce some symptoms.

[etherealcataclysms]

Yes! It’s interesting! In that view they are very needle-like. When I use other views they show to be more standard!

Do you have suggestions on working to get the curvature back?

[Isaiah_40_31]

I see what you mean about the styloid looking a bit thicker in this image.

Getting your neck curve back takes time but there are some simple exercises that help with that. @vdm has done a lot of research on the ill effects of military neck & curve restoration. Here’s a link to some threads with good information:

Question for those with military/straight neck (loss of cervical lordosis)

Hi VDM, Yes, the catheter venogram was done at supine position and I agree the fluid dynamics are affected by position and heart rate in the case of the vascular system along with many other physiological stuff such as whether you are awake or sleeping since that affects the heart rate. So standing/sitting will be different from supine position, similarly, running vs stationary. It turns out though that the Jugular Veins tend to do all the draining exclusively in supine position as opposed to …

"Military neck" (loss of cervical lordosis) relation to Eagle's - the missing link?

Your situation is definitely a frustrating & puzzling one as far as how to provide proper treatment that will somehow circumvent the post op inflammatory response. There must be a doctor who has experience with that, but finding that doc will be like the proverbial “finding a needle in a haystack”. That said, I will pray the “needle” will be found so you can proceed with the best options for your medical care.

My toolkit to self-release tight muscles

Those who know about my situation, most likely have heard that I do a lot of self-massage/stretches (a few hours a day at least). Good news is that I finally managed to regain good amount of my neck and spine’s mobility about four-five months since starting this. It’s fantastic to wake up in the morning and feel that neck isn’t painfully, totally stiff. It’s a brilliant feeling when body now starts attempting to relax and do some “muscle twitches” before falling asleep… Here in the pic is my “t…

If you look up exercises for military neck on YouTube quite a number will come up. The one I do to help prevent it is to lie on my back, facing the ceiling, w/ my knees bent & gently press the back of my head into the floor to activate my neck extensors (the muscles to the right & left of the neck’s center). I put my fingers on the muscles while pressing my head into the floor so I can feel whether they’re activating evenly. If they aren’t, I adjust my head position until they are. I count slowly to 5 as I press my head into the floor then release the pressure & count slowly to 5. Repeat 5-10x BUT if this flares your symptoms or causes any pain, wait to do this until your styloids are out. This exercise can also be done against the headrest in a car while driving or being a passenger, sitting in a chair w/ a high back, etc.

[LimeZest]

@Isaiah_40_31 do you have any links for the neck extensors exercise. I had seen you write it before and tried this the last couple of days. This is seriously the first time I’ve been able to isolate the muscles which have been stiff for a whole year. Just curious on progression of other neck extensor exercises, e.g how to progressively load if they need further training.

Also found that putting a hard book ok the floor makes this stronger still

[Isaiah_40_31]

I’m so glad you’re getting some relief, @LimeZest!

Something else that helps me is a white Denneroll which I bought from my chiropractor but they’re also available on Amazon & through the Denneroll site. The instructions that come with it recommend to use it gradually increasing length of time spent lying on it. I found if I go much longer than 10 min, the back of my head goes to sleep but I don’t think that’s normal. Cervical Combination Order

Below are 3 links to YouTube videos. Each offers slightly different exercises for helping increase the lordotic neck curve. PLEASE BE CAREFUL WITH THESE. Many ES patients are not able to do the neck rotation shown in some neck extensor videos until their styloids are removed. ALWAYS REMEMBER - PAIN IS NOT GAIN when elongated styloids are present. Only do these exercises to the extent that you can w/o aggravating or increasing your ES symptoms.

Fix Forward Head Posture - 3 Easy Exercises (From a Chiropractor)

Corrective Exercise for Forward Head Posture and Upper Crossed Syndrome

Restore Your Bad Neck Curve With a Simple Towel Stretch- Physical Therapy

[Rlr286]

How has your experience with Dr Hepworth been?

I have an appointment to see him in May. It’s a long ways out, but I am a bit nervous about it and the whole process. I know it is a long road, but I worry that I have other complications in addition to ES/VES (HBS, CCI) and my hope is that Dr Hepworth can shed some light on all.

[juliezuber]

My experience with Hepworth has been good, although slow. I had several issues to peel away before ES emerged.
His office, however is a nightmare (balls dropped, phone unanswered, prescriptions called in wrong, hard to get in, surgery not fully scheduled and cancelled at the last minute, …). This makes it hard on everyone.
Note that the first appointment post op will likely be with a nurse.
Dr. Hepworth looks for more than ES/VES. He is like a functional dr in that sense.
You are in good hands.
For example, he discovered I had a gallbladder issue. Some of the infections in my sinus were of gut origin. The gallbladder was essentially dead (diseased) and infection was traveling up the lymph system depositing on the left side of my neck.

He does not want to operate for ES unless he is as sure as he can be that it will help. It is too delicate an area to be in there messing with unless needed.

[Rlr286]

Yes I’ve already experienced the office nightmare. I think a 10% success rate of them answering the phone when I call would be generous.

Thank you, this is all very helpful

[Isaiah_40_31]

@Rlr286 - for the record, @juliezuber is one of many who’ve experienced the office nightmare that goes with seeing Dr. Hepworth. From what I understand, he is not in charge of hiring & firing his staff but is under the umbrella of a medical organization who handles all that. He is frustrated about how the office is run but can’t do a whole lot about it because of that.

[Rlr286]

This is good info to know! Thank you.