Hi! 
First post here. I’ve had symptoms for 25 years including TIA’s, Trigeminal Neuralgia on the left side, Myoclonus Tinnitus on the left side, Migraines, and terrible pain radiating around my left ear. I’ve been on pain killers for 12 years which has allowed me to raise my kids and work part time. While I did see Dr. Chan at UTSW in 2016 and she thought my symptoms weren’t a perfect match. my pain Dr of 12 years thinks Eagle Syndrome is very likely. I recently picked up a disc of my CT from 2015 and utilized the 3D app. While the report just says my styloid processes are 4+ cm it’s the angle of the left one compared to the right styloid process that I find interesting. I’m wondering if others have such a situation where one styloid process has a significant difference in angle compared to the other one.
Your left side is definitely longer than your right side, @Laluloh, & I see it’s kind of lying on your mandible. We had a member awhile ago who’s styloid had partially fused to the mandible though yours looks more like it’s resting on it. You will definitely feel better once those spikes are removed from your neck!
My styloids were at very different angles w/ my right side growing more straight down while the left one was angled more inward. I don’t think having each styloid grow at a different angle is that uncommon though I don’t know what influences angle of growth.
They’re long enough to cause symptoms regardless of the angle!
A shame that Dr Chan didn’t help; I don’t think any on here have a ‘perfect match’ of symptoms, not even sure what that is! Have you got plans to see someone else?
Thanks Jules! My pain Dr will be doing a few blocks next week. I’ve had many blocks through the years, some work and some don’t. I realize these blocks don’t necessarily diagnose anything but it will be informative if they do. Meanwhile I’ve put calls into Dr Chan, Dr, Hepworth, and Dr Hackman. My pain Dr has sent 2 people to Dr Chan and he said their surgeries were successful. While I’m not crazy about Dr Chan, I would rather a Dr not do surgery unless they believe in the diagnoses 100%. I went into cardiac arrest attempting a surgery about 10years ago where the dr was quite sure that the ear pain was Geniculate Neuralgia but not 100%, so I am cautious.
Hello and welcome @Laluloh
Boy I feel for you, what a struggle to deal with for 25 years
Great job with the 3d images,
I am wondering where do you get the blocks, and would that be with lidocaine?
I have had cortisone injections in the neck facets and then nerve ablations, that did not help prior to eagles diagnosis.
But when the right neurologist heard whoosing and pulsitile tinnitus as symptoms we finally got blood flow studies that confirmed VES, and venous outflow obstruction.
What a scary experience when going into surgery,
I sure hope you can get some clear answers soon.
Glad to hear your have already reached out to Dr Hepworth and Dr Hackman
Have you had any blood flow studies done in the past like a CTV/ CTA?
Hi! I’ve received steroid blocks for my Trigeminal Neuralgia every 3 months for many years. I don’t remember if my Dr used other chemicals besides just steroids. Eventually those blocks stopped working and now I use Lidocaine patches on the Trigeminal Nerve. Then recently my Dr also performed steroid blocks in my cervical spine which were helpful. These new blocks he said he’s focusing on the Glossopharyngeal and space around the Styloid Process. My Dr also did perform an ablation to my left trigeminal nerve probably 7-8 years ago. I had a CT with contrast in 2015 but maybe a CTA/CTV is different?
Once I went into cardiac arrest I told myself to stop trying to find a Dr to agree with my prognosis and perform surgery. Really when Dr Chan in 2016 said my symptoms aren’t a match for Eagle Syndrome I put it out of my mind and just focused on handling my symptoms with the help of my pain Dr. But when he recently mentioned Eagle Syndrome is likely a good match I began researching info once again.
Thank you! So helpful.
A very scary experience, understandable that you decided not to have surgery under the circumstances…good that you’ve managed to live with the pain & just injections for so long… 
that you find the right doctor & make the right decisions… 
A CTA/CTV focuses specifically on the cervical vascular system & is often done dynamically i.e. w/ the head in various positions looking for head positions which may cause compression of the internal jugular vein or internal carotid artery. The contrast agent used for an CT is iodine based. The contrast used for an MRI has to be magnetic so is gadolinium based. There has been some controversy regarding the safety of gadolinium & whether it stays in the body as a heavy metal or truly dissipates over time. For this reason, you should do some homework if an MRA/V is suggested.That said, I had one done in Jan. '23, & had a headache for a couple of weeks after but have felt fine since.
Thanks so much for that thorough explanation!
@Lulaloh - I made a mistake. I meant to say CT scan contrast is iodine based & MRI is gadolinium. Sorry about that!
Well I am glad you have stayed persistent navigating threw the system
I hope you get some relief soon from your next set of injections
As well as good workup for Styloid involvement by an experienced doctor. It will good to finally find the root cause of all this and a solution!
I did try the lidocaine patches a couple of times early on for pain, but they made me though up the two times I used them on my neck base of skull area.
Best wishes🙏
Thank you!
I might not always respond to all the posts on this forum, but I do read many of them. You are a comfort to me during some of the difficult days and evenings that encompassed my journey of 10+ years of undiagnosed pain and ridiculous discomfort.
Dr. Hackman at UNC was the surgeon I opted to go with for my surgery and I am nearing the 1 year mark in the next few weeks.
Some months were better, mixed with cortisone injections at Northwestern every 4-5 months, 25 mg of amitriptyline before bed, and low dose CBD/THC pills at night to sleep. However, it has not completely resolved the fullness and pressure in the throat and back of neck (and the throw up sensation I have all the time with the fullness associated). I have stopped the CBD pills since it can make my throat hurt more the next morning and am thinking about stopping the amitriptyline too as I am not sure it is doing anything.
In Nov, I plan to return to Northwestern for another round of injections.
Yesterday, I went to Stanford’s ER after a longer flight where the air (AC) stopped working and the plane exceeded 85+ degrees for 1-2 hrs (hot air blew out of the vents and the plane attendants couldn’t stop it causing mass hysteria amongst those that didn’t do well with cramped space, pressure, and hot air blowing on everyone. Stanford ran a series of tests - CT with contrast, barium swallow, and much more. While it was inconclusive, the GI dept wants to meet with me imminitely after the Stanford ENTs couldn’t undertstand why I was experiencing the acute pain and lost the ability to breathe easily (closed airway). I haven’t been able to eat much if anything for 48hrs and slept 1-2 hours over the past 40 hours.
It is times like this that I want to give up and I lose the motivation to continue on this path of “trying something new”.
Regardless, I am here for you - I might go see Dr. Hepworth since is seems that Dr. from the forum’s perspective keeps trying different things vs. Dr. Hackman (who has great bed-side manner) but stops really following up after a few weeks post-op.
As always, I remain ready to help if there is something from my experience that will help you.
Thank you!
JPB
So sorry that you’re still searching for answers, I hope that someone can suggest something to help you
Thank you! I am here to contribute and will continue on my journey regardless and share the results with the group :).
Stanford is having me see 2 experts in the area but I can’t meet with them until Feb. 2024. Based on what the outcome is, I will share it here for others searching.
JPB
I really hope your upcoming appointments provide you with some answers and, more importantly, some meaningful relief. Perhaps an earlier appointment with these doctors will open up and you can see them before Feb. 2024.
The recent exacerbation sounds arduous. I’ll keep you in my thoughts and prayers.
Thank you for taking the time to share your one year post surgery update.
Thank you JPB for responding. I feel for you in all that you are going through before and after surgery.
I have tried many medications through the years including Amitriptyline and CBD. While Amitriptyline was not a help, CBD definitely helped with pain control. I take opioids for the pain I have in my ear and have for about 12-13 years. At about year 6 I tried CBD and it allowed me to cut my opioid dosage in 1/2 in just 5 days. I take 1 dropper/day of a 1500mg bottle of CBD oil.
I look forward to reading more about your journey. And I wish your recent flare up calms soon. Thanks again for sharing!
Thank you for taking time to share your thoughts!!!
I wonder if it is the THC in the CBD/THC pill that the MD encouraged me to take that caused the additional throat pain. It does work to minimize the pain for the 6hrs or so afterwards. I didn’t think about trying CBD only - that is a good idea.
Have a wonderful week!!
A follow-up question:
- how long did you stay on amitriptyline and what was the dose and frequency? I am at 25 mg, night only, for 5 months. I feel like it made me gain weight, but it could also be that I eat more food for comfort when in pain. Initially I lost 40 pounds due to this throat pain and my inability to keep food down (or swallow).
Also, oddly, when I am on planes my throat pain, fullness, etc. worsens dramatically. In addition, I start to exhibit a feeling in my throat that I would normally feel if I threw up (I am sure you all know what that is like).