I guess I have had ES for a long time

[Cody]

I am so glad I found this group. This is my story. I have had ringing in my years forever, stomach problems, sleep apnea, and other pain. Eight years ago, I was having pain in the front of my neck, weak voice, coughing, and ringing in my ears. I had a CT and was told I have Eagle Syndrome. I had pain, but it was not too bad, and I didn’t want surgery.

Last year I woke up with horrible pain in my left arm. I could not look down and could not use my arm and three fingers numb. The pain in my arm was a 10+. I tried PT, shot in spine, chiropractor, had MRI, nerve test, and finally ACDF surgery. My spinal cord was compressed, 2 pinched nerves, and herniated disc. I had 3 disc replaced C4-C7, plate, and screws installed. Arm is mostly good now but fingers still numb.

After the surgery, I could not bend down without my airway getting closed and breathing was difficult. I get light headed, loud ringing in ears, pain in jaw and teeth, brain fog, feels like a tight belt is around neck, choking, dizzy when walking, headaches with vision problems, cannot bend down, and difficult breathing. I have now had another 3D CT and the yes ES is the problem. I have calcified bilateral stylohyoid ligaments measuring 6.8 and 5.2 with the internal jugular vein compressed. The styloids were not touched during the ACDF surgery, because no major pain from ES, and the limp arm with pain and shoulder pain was my concern. After the surgery, they think my spine has shifted and is caused the styloid to press different areas. I have been having pain before the ACDF surgery, but I did not associate it with the ES.

Keep trying to find someone to listen. After surgery my spine surgeon said “that is an odd symptom and I don’t think it is ES. You need to go to an ENT”. First ENT didn’t know what ES was. Next ENT listened to me but said “I can guarantee you 100% the difficult breathing is not from the ES”. But I talked them into sending me for a CT. After CT, the helpful ENT said that is impressive and is sending me to an ENT oncologist, and he is on the ES doctor’s list. I am now facing another surgery and I was wondering: What are some questions to ask before surgery? Was your surgery successful for the pain and problems? Any pointers will be helpful.

Thanks for your help and I hope everyone can get the relief that they need for this strange illness.

[Isaiah_40_31]

Hi Cody!

I’m glad you’ve found a doctor on our list who might be helpful for you. With your vascular symptoms, you will want to make sure to see a surgeon who is familiar with vascular ES & will cut the the styloid(s) as close to the skull base as possible to help take pressure off the IJV. We have one doctor on our list who specializes in vascular ES - Dr. Hepworth in Denver, but he’s not taking new patients until sometime in May. Dr. Hackman in NC has also helped some of our members w/ vascular ES.

Questions to ask:
Are you familiar w/ ES causing IJV compression?
(If yes) How do you help to resolve the problem surgically?
How short do you cut the styloids (back to the skull base, if possible, is the answer you want to hear)?
Do you remove the stylohyoid ligaments if calcified (sometimes the stylomandibular ligaments are also calcified so you can ask about those as well).
Do you use the intraoral or external (transcervical) approach? (external gives better access to & visibility of styloid, & soft tissues; nerves are usually monitored to help protect them)
How many ES surgeries have you done?
In your experience, how much symptom relief can I expect?
Length of healing time? (Most docs err on the low side here).

I highly recommend you read through the section on the homepage about Patient Self Advocacy (click on the butterfly avatar in upper left of this page to get to the homepage).

Hopefully others will chime in w/ questions they thought were important.

[Cody]

My photo. the long side of 6.8

[Jules]

That is impressive! So sorry that you’re having to face another surgery, that’s rough…I had manageable ES symptoms for a while, then had a prolapsed disc C5-C6, & after that I started getting vascular symptoms- I can only think that it was enough to cause a shift & compress the jugular veins, so I can well believe that having ACDF surgery could cause your new symptoms.
I think Isaiah has covered all the best questions to ask, just check if they do leave a stub of the styloid that they will smooth off what’s left, & that if they don’t go right back to skull base, will it be shortened enough to remove any compression.
We’ve had quite a few members who’ve had compression/ irritation of the vagus nerve by the styloids; the vagus nerve does affect breathing so it is a possible cause of yours. Nerves can take a while to heal after surgery so you’ll need to be patient! My vascular symptoms improved really quickly after surgery, but this doesn’t happen all the time. My neck pain improved quickly too, I do still have some TN pain but this is better than it was.
I hope that your appt goes well!

[Isaiah_40_31]

WOWEE!! That’s a long styloid! Plus it’s very thick at the top & oddly jointed, too. Getting that thing out of your neck should help tremendously with resolving your symptoms.

Please let us know how your doctor appt. goes.

[Cody]

Thanks you for the advice. My appointment is May 10th. Everything has taken forever since all of this started. At least I think I have found someone that is listening now.

When I think back to last year when the arm and neck went out, I was having a lot of ES symptoms and just didn’t not think that was the cause. Maybe I can get some help soon.

Thanks

[Snapple2020]

May want to get evaluated for Ehlers Danlos-hypermobility and TMJ in addition to the ES.
Im currently struggling myself he arm/hand issues AFTER bilateral ES surgery. Diagnosed with TOS (Thoracic Outlet Syndrome) and now seeking consult for that. I has TOS surgery on the opposite side in 1999. You have some narly long styloids/calcifications. Down expect ES to resolve it all. It is a process of elimination. Make sure you have highly experienced ES surgeons.