Hey there, I’m very happy I found this community. I live in Portugal and it is very hard to find a surgeon who can deal with eagle syndrome here but I was lucky enough to find one who confirmed my diagnosis. I will have surgery in 5 days.
Prior to that, I was receiving treatment from a TMJ specialist and physiotherapist.
I’ve been struggling with light ear and throat pain, high-pitch tinnitus, mild hearing loss, brain fog, mild visual snow, and strange vision symptoms. Most of the pain is left-sided as well as elongated styloid (left:28.36mm, right: 21.96). I have jugular vein compression on my left side.
My surgeon doesn’t want to do decompression. He will only remove the styloid to the skull. He thinks that styloid removal will be enough to open the jugular. If it will not open it I will be perfectly fine and shouldn’t seek treatment but after reading people’s stories I realize that is not the case. I’m very happy that this bone will be removed, but should I seek decompression surgery if it will not help? I will attach some imaging to this post.
From the imaging I can see that compression is on the C1 level but my styloid is barely there.
Hi @green_potato! Welcome to our forum! I’m excited that you’ll be having surgery in 5 days & that your surgeon plans to cut your styloid back to the skull base. Would you mind sharing the name of your surgeon if you have good results. We’d love to add the name to our Doctors’ List if he does a good surgery for you.
I looked at your images, & your left styloid is much thicker than your right one which is most likely the reason it is compressing your IJV against C-1. Your right styloid, besides being thinner, is also angled more downward which may be helping it to avoid the IJV.
It can take some weeks or a couple of months after the styloid is removed for the jugular vein to re-open so symptoms can stay for awhile. If the IJV does open up, the symptoms will gradually disappear. If the symptoms don’t go away then you will need to follow up with a vascular or neurovascular surgeon. Here is advice @KoolDude gave to another member earlier today:
“Get neurovascular or interventional neuro-radiologist to do Catheter angiogram/Venogram to properly assess your…jugular vein blood flow. After removing the Styloid, you might need endovascular procedure for ballooning the jugulars if they don’t open up.”
We have members whose IJVs have successfully re-opened after the styloid was removed & others who have not had that happen. After surgery, sleep & rest w/ your head elevated to 30º using a wedge shaped pillow with some bed pillows on top to help increase the angle & comfort level. Sleeping very elevated is not natural so it won’t be very comfortable but it will help decrease the swelling in your neck & throat. I slept on mine for 6 weeks after surgery but others have only needed it for a few days or a week. Also, get at least 2 gel ice packs so you can ice your neck every few hours for at least the first week after surgery. Place a thin towel between the ice pack & your incision to protect your skin. Leave the ice on for 15 min. & off for at least 45 min.
You may have a sore throat & a stiff jaw after surgery so have some soft food in the house you can eat w/o much chewing. Here’s a list one of our members posted a few years ago: Surgery shopping list
We also warn our members that the opioid pain meds often prescribed are very constipating. If you plan to take a prescription drug, take a laxative & stool softener with it to help prevent that uncomfy problem.
I’ll add your surgery date to my calendar & will pray for you then. I hope that one surgery is all you need to feel better!
Thank you for your amazing suggestions!
Good luck to you green_potato!
I hope surgery is a success for you.
I will be looking for your updates post surgery.
I have an ENT appt on 11/21 for my first consult w someone who knows about ES. The bruise on my collar bone for the past 6 months has me concerned about compression.
Today is Day 2 for me on this site- sooooo helpful.
Thank you! I will let here now about surgery outcome.
I had bilateral jugular compression, getting the worst side removed made a big diffference to my symptoms, although I don’t think mine had been compressed for that long. Getting the styloid cut right back to the skull is really important so good that your surgeon will do that, otherwise if any is left it could still cause compression & symptoms… Sometimes surgeons have a vascular surgeon on hand if they do a styloidectomy to re-open the vein, but often it’s a wait & see approach, so try not to worry.
Hope your surgery goes well, will pray for you too!
I’m very happy to hear that it made a big difference!
Thanks a lot
Welcome to the group and good luck with your surgery. Another option to mention is that some benefit from having C1 tubicle trimmed if it is compressing the JV more than/as well as the styloid. Also styloid ligament can get calcified and so cause symptoms (as well as styloid bone itself). If so removing ligament as well as cutting styloid bone May he needed. Hope this op will solve things for you. Think about using lymphatic drainage to reduce post op swelling as well as icing etc already advised. Let us know how you get on. D
Hello, yesterday had a surgery. I will write a massive update once I will be better.
Is throat swelling normal? It seems like it is hard to breath because it slightly closed because of the inflammation
I’ve replied to your post @green_potato, & hope you’re on the mend soon…
Today is my 3rd day post OP. Feeling good. Pain and swelling are manageable. Taking my meds(paracetamol, and prednisolone with antibiotics). Did physio therapy they massaged the swelling area, and used green laser to promote recovery
I had a chat with my surgeon they removed other ligament because it is classified. Does anybody know what is the name of this ligament in english?
It is the stylohyoid ligament which runs from the tips of the styloids to the lesser horns of the hyoid bone.
Your styloids look nasty! So glad they’ve been removed!!
So happy they removed styloid.
Can you live okay without this stylohyoid ligament? This is where I had pain.
If you want I have a few videos from my surgery I can upload them
Yes! You won’t notice your stylohyoid ligament is missing. It plays a minor role in swallowing. Both of mine are gone so I can speak from experience.
Day 4 update. This night was good. I slept for a very long time. It seems like I developed cough which is bad for recovery because it will create some pressure.
Trying to stay positive and believe in the recovery, remind myself it is only temporary while my body is healing, otherwise it is very easy to be sad.
It is very hard to tell about symptoms improvements because I’m on meds and experience new type of the pains. But I see lots of changes which I tell about later. My left TM joint cracks and I have pain when I’m chewing so I’m sticking to liquid foods. Probably they pulled it a little when they were removing ligament or inflammation in this are pushes it away when I open the mouth.
Splint that dentist made me helps to relax the jaw and neck a lot.
I also recommend find mattress that can hold an angle like that it helps a lot with a sleep.
Hi, I find lymph drainage really helps post op swelling and recovery. You can find qualified persons around the world on Vodder.com website. They will teach you how to help yourself too if you ask them. My surgeon says can do that one week after surgery but best to check with your own doctor. Glad it went well for you. D
Thank you for the information about that type of mattress, @green_potato! I saw something like that when I was looking for something else awhile ago but it was for children. I’m glad there is an adult version.
So great that you’re sleeping well! That will help with healing. Also, you have a good attitude about your current symptoms - they are temporary. With time you’ll be feeling much better!
Day 5 update.
Wedge mattress helps a lot, had a recovery walk along the beach yesterday.
Feeling so much better. Still very uncomfortable to swallow, when I do throat goes to the right. Experience some pain(1/10) but not sure if it a nerve pain. Basically it goes down the throat and aggravated when eating drinking.
Some improvements to my tinnitus still perceive high pitch sound on the left side but no longer heart beat. Vision is still wonky
Thank you for keeping us updated. It feels good to have this community here for us.
Good that you were up to a walk, I’m sure being by the sea would definitely lift your mood…Good you’re not getting the pulsatile tinnitus, it can be a sign of jugular compression, excellent it’s improved!
If you’ve been thirsty & urinating alot have you had your blood sugar level checked? It can be a sign of diabetes. If it’s improved since surgery then no need to worry…