Hi all, I’m so grateful to have found this community. Was just diagnosed with ES after several months of difficultly swallowing, pain and swelling on the left side of my neck.
After several urgent and ER care visits due to throbbing/swelling in the blood vessels in my neck, I finally had a CT scan revealing elongated and calcified styloids on both sides. Have been going up and down emotionally since the ES diagnosis. Feeling both grateful to know what’s causing my symptoms and terrified by the thought of surgery.
I’m based in the Pacific Northwest and have an appointment scheduled with Dr Patel in Portland in early June. Because I’m experiencing vascular symptoms, I’m thinking about trying to schedule a consult with Dr Damrose or Dr Hepworth instead.
Trying to take things day by day. Thank you for reading my story - learning about others experiences has already been so helpful. Uploading 3D images from my CT scan, would greatly appreciate any thoughts!
Welcome @EagleinSEA. Your feelings are totally valid!! It’s totally normal to feel overwhelmed… especially in our cases as surgery is our best option (but still scary). Is the surgery itself or is it worry that it won’t work? Both of those are worries I have fluctuated between.
@EagleinSEA - Welcome to our forum! You have bilateral very long i.e. almost to your hyoid bone, & very thick styloids. No wonder your symptoms are so bad!!
I’ve annotated 3 of your images. It looks to me like your styloids are both potentially lying on your internal carotid artery (ICA) on each side, & on the right, at least, the greater horn of your hyoid appears to be poking the external carotid artery (ECA). The left one may be, too, in certain head positions.
I can’t comment on whether or not you have any IJV compression since I can’t see them up closer to your skull base. If you can provide some sagittal images, both left & right, w/ the head cradle removed from the images, that would be helpful for seeing the IJVs. It’s unusual to have both IJV & ICA/carotid compression, but it does happen. We’ve also had members who’ve had both ES & Hyoid Bone Syndrome which the elongated greater horns of your hyoid bone may be pointing to.
If you don’t have IJV compression, seeing Dr. Patel isn’t a bad idea, however, we’ve heard he won’t offer surgery until he’s been allowed to do a lidocaine/steroid injection into the tonsil area of the throat to more officially decide whether symptoms are coming from the styloids or not. That is a procedure that hasn’t proven to be very accurate for diagnosis & with styloids & a hyoid bone that look like yours, I feel there’s no question about the causes of your symptoms.
Dr. Damrose or Dr. Hepworth would be better choices, but both are booked out to late summer at this point. You could also consider Dr. Osborne in Los Angeles, but he doesn’t take medical insurance.
Hi and welcome to the site! I think we all have mixed emotions when getting this diagnosis- often relief that there’s validation and a name for our symptoms, but anxiety about it, the surgery, & the idea that blood vessels in the neck could be compressed. It is very, very rare for any complications to come from this, but I think you’re wise to consider seeing one of the doctors who specialise in vascular ES…
As @Isaiah_40_31 says, we can’t see exactly from the angle of your images, but your styloids are certainly long, thick and curved inwards! What are your symptoms?
@EagleinSEA Honestly, one of the positives here is that you got diagnosed relatively quickly. A lot of people go much longer without answers, and by that point symptoms can be a lot harder to manage and one is begging for surgery. It’s completely normal to feel nervous about surgery, but having a clear diagnosis early gives you more control over your next steps and time to choose the right surgeon for you.
Your styloids are not only long they are thick, and they angle in heavily, they are an issue, amazing they weren’t causing issues sooner.
Thank you all for your kind and encouraging words and thank you for taking the time to review my scans, as well.
If I’m being honest with myself, it’s been over a year since symptoms started to crop up and I largely ignored them, especially with medical professionals, friends, and family telling me it was likely anxiety or muscle strain. I am relatively young (31 y/o), and I was starting to feel like a hypochondriac, periodically visiting doctors and being told my symptoms were in my head.
Over the past few months, my symptoms have become much more intense and have been getting progressively worse over time. For the past 2 months or so, my quality of life has become severely impacted, and I am often unable to do anything after work apart from lay down in my bed. Current symptoms are:
Swelling and general tightness on the left side of my neck, in particular my jugular vein, carotid artery, and lymph nodes in the surrounding areas.
Pain and inflammation sensations in my jugular vein and carotid artery on the left side.
Inability to turn my head to the left.
Left side tinnitus/ringing/difficulty hearing
Shooting pains in the left side of my jaw and left side of my chest.
Tingling/numbness feeling in my left arm and shoulder
Pressure/fullness feeling in my head
Feelings of impending doom and depression
Difficulty/pain with eating and swallowing
Hoarse voice/sore throat
While I know I’m incredibly lucky to have been diagnosed with ES in a relatively short time frame, I think my anxiety is stemming from navigating the health care system given how few ENTs are aware of ES. While I know that the cause of ES is unknown, I did experience a severely physically abusive relationship 10 years ago and have been fixating on the idea that neck trauma I experienced in that relationship could be the cause. I think I’m also feeling nervous that surgery may not work or will lead to a complication that further derails my life.
Unfortunately, I couldn’t figure out how to remove the head cradle from my 3D CT images, but I’m attaching a few additional images where I’ve tried by best to navigate around the head cradle. It looks like there could be a chance of IJV compression on my left side, but not my right, as far as I can tell?
Thank you, all, again. I am so grateful for this community and hope I’ll be able to support others as I navigate through this as well.
@EagleinSEA I am so sorry you are experiencing all these symptoms. Your symptom list and my list are identical and I know how exhausting and stressful they are. .
Those are brutal symptoms, I know because I’ve been where you are. I’m really sorry you’re suffering with this.
I can’t guarantee surgery will fix everything, but what you’re describing is progressive, and your styloids clearly look like a primary driver. The longer they’re left, the more they can irritate and compress surrounding structures. Finding the right surgeon makes a huge difference, it goes a long way in feeling confident about the decision.
For context, I’m about 4½ months post-op from bilateral styloidectomies and still recovering. I had many of the same symptoms you’re describing, plus pretty intense nerve pain in my neck and face.
Recovery isn’t linear. There are ups and downs, and on the harder days it’s easy to think the surgery didn’t work, even when it actually did and your body just needs time to adjust after decompression.
One thing you won’t have to worry about after surgery is the styloids continuing to affect your carotids, which is a big piece of this.
Also, since you mentioned swelling, my neck and facial swelling started improving almost immediately after surgery. It was truly amazing.
@EagleinSEA - I agree that your symptoms could point to IJV compression (which is obvious on your left IJV) & ICA/ECA compressions. I can’t remember if I sent you the link to our common symptoms & possible causes post which @Jules wrote, but it’s very helpful so here it is -
Thank you for the additional images. What I noted in the posterior image is that your C1 vertebra is shifted to the left & a bit downward which may be the result of your neck injury 10 years ago. That has pushed the left transverse process of C1 into your left IJV. I can’t tell whether C1 or the styloid is the greater compressor, but because of that situation, it would be wise for you to see one of the vascular doctors on our Doctors List. You had mentioned Dr. Damrose or Dr. Hepworth, & either would be fine. Dr. Damrose seems to be a bit more picky about whom he takes on as a patient, but it would still be worthwhile getting his opinion.
I’m sorry that getting this diagnosis has made you relive the cause of your neck trauma which might have led to ES, hugs for that
I agree with @Isaiah_40_31 that it looks like your C1 is contributing to compression of the IJV on the left side certainly, so from that & your symptoms it would be a good idea if you could have a consultation with one of the doctors who is more aware of Vascular ES… Other than the 2 mentioned, Dr Nakaji in AZ, Dr Costantino in NY, Dr Cognetti in PA or Dr Lui in NJ are experienced with this, unfortunately nobody near you!
I’m so sorry to hear of your difficulties with the health system and your trauma. Many of us can relate. While I won’t be helpful with your scans, I hope to offer you the smallest bit of comfort that you are not alone in this. I’m proud of you for taking the energy that it takes to create posts and look for answers and advocate for yourself.
Is the surgery itself or is it worry that it won’t work? Both of those are worries I have fluctuated between.
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