Hemifacial Spasms turned out to be Eagles Syndrome

[babsbr]

Hello All,

I want to express my extreme gratitude to all who have posted here before me. The information you have provided has helped pave the way for me and others. Just by reading your stories, symptoms, surgery experiences and how you successfully navigated this debilitating ailment has provided me with a blue print to follow as I too deal with these symptoms and seek treatment. Like many it took me 5+ years of debilitating to get to this point.

I decided to post because there was one huge symptom that was a major distraction to doctors and it was my facial spasms! HEMI FACIAL SPASMS. So much so that I was getting botox injections every two months and was lined up to have MVD surgery.

Thankfully, my fully calcified styloid ligaments were only found by accident when my Atlas Chiropractor did a CBCT on my neck because I was not holding his adjustments. This was 4 weeks before my scheduled MVD surgery! Thank god!

I want to post to make more people aware of this possibility.

Here are my symptoms:

Facial muscle spasms / hemi facial spasms and intermittent bilateral tingling in upper lips and jaw. These spasms can be triggered by engaging in movement of pursing my lips, yawning, raising my eyebrows, eating, speaking, smiling and moving my head to the left and looking down. These sensations include intermittent facial muscle tightness on left side, losing ability to smile & tingling or burning sensation spanning from ear, across cheekbones, then behind left eye and down jaw.

Pressure at base of skull with slight vibration, stronger on left side, discomfort in left jaw area, neck pressure and discomfort when turning my head to the left

Tinnitus low-grade high-pitched and fullness in the left ear

Vertigo and dizziness when engaging in physical activity, like running and working out or when head is in a looking down position

Occasional muscle spasms in neck up to head causing head to jerk

Pressure or feeling of something in back of throat, difficulty swallowing, which I would attribute to allergies, as we have a bunch of pets.

Significant cognitive impairments, including persistent brain fog and episodes that resemble stroke-like symptoms. These manifest as difficulties with memory, recall, information processing, speech, and concentration, which are profoundly distressing and disruptive to daily functioning. I noticed that if I modify my sleeping position and keep my chin up, symptoms reduce.

Symptoms are considerably worse when C1 is out of alignment AND yes this is a real thing. My C1 vertebra is pressing against my calcified Styloid Ligament and pinching my carotid artery.

I’m also posting my images to help others and pass on the knowledge.

[Isaiah_40_31]

@babsbr - Welcome to our forum! I’m so glad the information here saved you from having a major surgery that wouldn’t have been helpful. Applause to your Atlas chiropractor for noting your styloids are longer than normal and causing vascular compression!

Your symptoms sound awful and enduring those for 5 years is just not right! Your imaging clearly shows the ICA compression which looks a lot like IJV compression. I don’t think I’ve ever seen someone’s carotid compressed up that high. Your left styloid also has quite a curve to it which makes it look slightly wrapped around the ICA. Pretty crazy!! I annotated one of your images to clarify if what I’m seeing is the section of stylohyoid ligament that is contributing to your symptoms. If it is, it’s also immensely calcified & very thick. At first I thought it was part of your hyoid bone but after a closer look it appears to be the s-h ligament calcified all the way down to your hyoid.

I’m glad the mystery cause of your symptoms has been diagnosed. Are you scheduled for surgery to get your styloid shortened & your ICA decompressed? If so, who are you scheduled with? Getting your carotid opened back up should give good resolution to your symptoms, but remember it can take some time for the nerves to recover & the artery to normalize so you may not wake up from surgery feeling cured.

I really appreciate you sharing your story. We’ve seen some odd symptoms over the years, but I don’t recall anyone having a situation like yours.

[Jules]

Hi & welcome from me as well…that is pretty nasty calcification & elongated styloids you’ve got! I’m amazed that this wasn’t noticed at all, presumably you had scans done prior to a neuro deciding to do MVD surgery? WE have had members undergo this before realising that ES was to blame for their nerve pain, so you’re ‘lucky’ that it was picked up before your surgery… If you’ve not seen anyone for ES yet, Dr Costantino in NY is experienced with Vascular ES:
Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
or Dr Coniglio:
Dr Coniglio, Rochester, John U. Coniglio, MD | Rochester Regional Health does hyoid bone surgery & works with Dr. Taka Higashimori for VES and C1 shave, also does hyoid trim if needed.
I’m sorry that it’s taken so long for you to get a diagnosis, but pleased that hopefully now you can get the right treatment!

[babsbr]

Thanks! Typically with Hemi Facial Spasm it is often caused by a vascular loop, compressing the facial nerve. These vascular loops, typically small blood vessels, irritate the nerve at its exit point from the brainstem. Like most people our blood vessels in the brain abut the nerves. However in my case the compressed JV is causing internal cranial pressure, causing the pressure to expand the vessel and irritate the nerve. I do not have a loop. So to any of you who are having facial nerve issues, pay attention NOW. Take this seriously.

The good news is that because of all of you, your amazing information sharing and your list of doctors, I was able to connect with Dr. Constantino. The symptom he was most concerned with is my “brain fog” which has gone over looked because I am very high-functioning. No matter what I said to doctors about “my thinking” and how I felt like I was forgetting things, the tests they gave me all seemed fine. But I knew with complete certainty that my information processing level was impaired, and Dr. Constantino saw this. He is a very remarkable man.

When I learned about the calcified ligament in my neck, I googled it immediately and your site came up in the search. This enabled me to learn so much very quickly and reach out to experts for evaluation.

Clearly my ES journey is not over, as I have surgery pending. Nonetheless, I will forever be very thankful for the incredible resource you have developed on this site. Truly!

[Isaiah_40_31]

When I initially looked at your imaging, I was convinced it was your IJVs that looked compressed & started to comment on that, but you had said it was the carotid(s) so I zoomed in & saw that at least on the left side, your ICA does appear impacted by that section of calcified ligament so I didn’t comment on the IJVs.

We’ve had a few members who’ve had both IJV & ICA compression. It appears you’re one of the “lucky” ones . I’m so glad you’ve seen Dr. Costantino & are on your way to getting your situation taken care of.

[Jules]

Brilliant that Dr Costantino has been helping you & took your symptoms seriously! Keep us posted as to if you need any more testing done or when you get a surgery date

[babsbr]

Hello Eagles Angels, Happy to report that my surgery with Dr. Costantino & Dr. Tobias is scheduled for Aug 25 in Stamford. I will do my best to keep the board up to date with my post surgery progress, especially as it relates to my neuro facial spasms and facial nerve irritations. I’m noticing more people on the board lately commenting on facial pain, nerve issues, tightness, sensations, tingling and heat or burning sensation across the cheekbones, all of which I have experienced.
Cautiously optimistic!

[babsbr]

[babsbr]

[Isaiah_40_31]

WOW! @babsbr - Your left styloid is MASSIVE - massively thick & long!! Your right one is quite long as well but very slender in comparison. I also see that you have sections of calcified stylohyoid ligament. Do you know if Dr. Costantino will remove those as well? You may need both sides done to get the best results so don’t be to disheartened if your symptoms don’t all go away after your first surgery.

Exciting that you have surgery coming up reasonably soon. You’ll feel so much better w/ that huge styloid gone!

[babsbr]

Thanks, CRAZY right? Once you actually see how large the mass is you can understand how it is causing so much pressure and irritation to the facial nerves. Right now the plan is to remove the large one first and second one in 3 months. We will discuss further at our surgical planning meeting. I trust his judgement and know he has the talent and experience to deal with this situation. I decided to post the images here, so others could learn from my case and see it all together.

[Jules]

I think you win an award for that styloid! Not an award you want though I’m sure… I hope that your surgery goes well and makes a big difference to your symptoms, will pray for that

[babsbr]

[babsbr]

[Isaiah_40_31]

More great pictures. Thank you! @babsbr! It really helps to understand where ES symptoms come from when the layout of the nerves & their proximity to the styloid is seen.

[babsbr]

Hi Eagles flyers, Update, after many weeks of sparing with UHC, my surgery is finally a GO on Monday 9/8. The dream team of Dr. Costantino and Dr. Tobias will be doing the honors. I’m eager to get this over with and hopefully restore my quality of life. Do any of you have any advice for “leaving the hospital”? will I be able to walk up a flight of stairs after being released from the hospital? My master bedroom is one flight up.

[TML]

I don’t think I’ve seen the entire length of a stylohyoid ligament calcified before. Wow. Literally all the way from the skull to the hyoid lesser horn. Does your hyoid bone move at all when you swallow?? @babsbr . I imagine that it can’t since the flaccid rope allowing it to go up and down has turned into bone.

[babsbr]

Funny, I have not given it much thought… But I imagine you are correct to a certain extent. I have noticed a small space in between the structures depending on the angle viewing the CT scan. We will have to wait and see after the surgery. Dr. Costantino has assured me the hyoid will remain in a stable position.

[Isaiah_40_31]

How exciting for you to have a surgery date that’s coming up very soon, @babsbr! Time to get that nasty thing out of your neck!!

You should be fine to walk up & down stairs after your surgery. You may feel a bit lightheaded so hang on to the bannister or have someone walk with you if you’re feeling unsteady on your feet & take it slowly. You can always stop to rest, too, if you need to.

In case you haven’t seen this post that @Jules wrote about ES surgery, here’s the link:

ES Information- Treatment: Surgery

ES Information: Treatment Available For ES- Surgery Disclaimer: These answers to common questions were put together for new members to gain a head start in finding information about Eagle Syndrome; to give you confidence to discuss issues with your medical team and to encourage you to research issues further for yourselves. It was compiled by a volunteer Moderator, who does not claim to be a medical professional, merely an informed observer and patient! The sources used are personal experiences…

If you scroll down, you’ll find a section that talks about Recovery from surgery. The following section which is called Vascular ES post-surgery and Stenting which discusses recovery from those.

Here’s a suggested surgery shopping list which you can, of course, tweak to fit your dietary needs/desires:

Surgery shopping list

Here is a simple shopping list for pure-surgery: Wedge pillow 2-3 Icepacks (I put mine in a pillow case that was thin enough to feel the cold and long enough to wrap around my neck) Neck pillow Puréed soup Muscle milk Vanilla yogurt Popsicles Throat lozenges Throat soothing tea Good books, magazines, music, movies Mederma for scar repair and has sunscreen too I Hope this helps future surgery members Feel free to add your favorite items to the list Seamom

The key things that will help you post op is to sleep w/ your head elevated up to 30º if possible (a wedge pillow is helpful with this), ice your neck for 15-20 min. every couple of hours w/ a thin cloth or towel between your skin & the ice pack to prevent ice burns, take your pain meds on schedule, including in the middle of the night. Get a stool softener/laxative to take daily if you opt to take opioid pain meds. Having your “plumbing” back up is miserable when your neck is sore. If your pain is too severe in the first week after surgery, request a tapering course of dexamethasone or prednisone from either Dr. C or your local doctor. It will help reduce swelling which in turn helps decrease pain.

I think that’s all I’ve got for now. I’m putting your surgery date on my calendar so I can pray for you on Monday.

[Isaiah_40_31]

Ask Dr. C if he’ll take a picture of your styloid once it’s removed so you can see it not just in imaging.