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Eagle Syndrome - Online Support Group

Success Stories!

I had a ct scan with contrast. After that they did a angiogram as my symptoms were getting dizzy when I turned my head a certain way. The angiogram showed the styloid cut off the artery to my brain. That was 6/22/19. My surgery is 8/22. They are externally doing both sides at the same time. I am a little nervous as I am supposed to go to Hawaii a week later. Hope I can make it.

There have been a few members who’ve had both surgeries in one go, but most doctors don’t because of the risks of swelling- there can be lots of swelling with just one side, so doing both at once is often regarded as too much. I don’t want to cause you more stress, but I personally wouldn’t consider going away that soon after having one side done, let alone 2…could you reconsider & get the worst side done first? Or postpone your trip? Recovery can vary alot- some people do feel okay after a week or 2, but some have found recovery really hard & have not felt great for a month or 2! Sorry…will add you to my prayer list for your surgery.

If you check out the Newbies Guide section there’s info about symptoms & what might cause them- it might help you to know that it’s definitely not all in your head, & could be something to show any friends or relatives if you need to.
So the throat & neck pain, & sore throat is easily undestood, ear pain can also be down to irritated nerves. Ear fullness also is a common one; it could either be a nerve issues but otherwise can be a smptom caused by jugular compression- the pressure inside your head can increase. That can also cause the heartbeat being heard in your ear (pulsatile tinnitus), & could also cause the blurred vision too, & headaches & dizziness.
The problems with your arm could be that the accessory nerve being compressed- it’s not a common one but there have been quite a few members with this symptom. The vagus nerve can also be irritated; that can cause tachycardia, and also stomach issues, it’s part of the autonomic nervous system so can cause ANS symptoms you mentioned you have.
I think that’s covered things?
I know it’s difficult when you have all this going on, but surgery can help ; many members struggle for a long time to get a diagnosis, so the fact that your CT confirms bilateral ES & jugular compression is a big step forwards for you. Now you can look for an experienced surgeon that you feel confident with to do surgery. Big hugs to you…

Hi Jules

My CT scan shows jugular compression on my ES side according to Mr Axon. This is despite styloid not being very long (but surrounding tissue has stretched making it mobile). He recommends lumber puncture and angiography, yet I’m pretty certain from the symptoms I’m getting that styloidectomy would more or less solve the issue. I get pressure and strangling pain when I bend over, head down or at certain angles. Basically whenever the styloid can’t be felt in the mouth, it feels like it’s off digging into other structures. I don’t have the funds to progress with him privately, so I wonder if that’s his normal line of investigation and whether you went through those tests?

He did mention maybe needing a lumbar puncture depending on what the CT showed, but when he saw the CT he said it was clear that the styloids were causing the problem so he decided not to worry about doing that. Which I was glad about; it’s not something I wanted to have done! I’m not sure why he’s suggesting doing that; he takes the styloid back to skull base anyway, so it’s not like some surgeons who would just take a little off to make it a standard length? Not sure about the angiogram either, that was never mentioned with me unless he wants to check something else out? I would definitely query these suggestions vs just taking the styloid out- certainly the lumbar puncture can relieve the pressure in the head for a while, but if the styloid & jugular compression is the cause then it’s likely to return over time anyway? And I know there are risks with ES surgery, but equally there are with lumbar punctures.

Hi Swoo -

Based on your symptoms, I would say in addition to bilateral jugular compression, your vegus nerve (heart rate, gastrointestinal/reflux issues, pain under chin, sore throat), accessory nerve (shoulder, back & arm pain/numbness). An irritated trigeminal nerve (face, ear pain & maybe even eye issues) are the cause of the particular symptoms you mentioned. The headaches/pressure will be the result of your compressed jugulars as will hearing your heartbeat in your ear.

For the record, I felt like my left eyeball was being pushed out of the socket from behind as one of my ES symptoms. I awoke from surgery w/ that symptom absent. WHEW!!

Seven of our 12 cranial nerves pass out of the skull & into the area of the neck where the styloids & calcified ligaments can irritate them when a person has ES. Each nerve can cause bizarre & unexpected symptoms when damaged or irritated. Most doctors don’t realize the broad spectrum of symptoms caused by irritated cranial nerves nor do they realize that the styloids/calcified s-h ligaments interfere w/ those nerves in ES cases.

It does take some months post op for nerves to heal & many people have gotten discouraged thinking their surgeries didn’t help. However, it can take 6-12 months beyond surgery for those symptoms to subside. The name of the post op game is PATIENCE!!

I fully expect that once your styloids & ligaments are gone the crazy symptoms you have will gradually heal & you’ll be restored to your old self.

I hope you’re able to schedule surgery soon! With both calcified ligaments & elongated styloids, you’ll for sure want to see a surgeon who will do external surgery & remove the styloid at the skull base (if possible) & also remove the entire s-h ligament.

:sunflower:

Ilovemaui2000,

I’m sorry to say that I have to concur w/ Jules. I would either postpone the surgery or the trip. If both surgery & trip are done deals, then you’ll need to keep your pain med regimen going while flying & keep ice handy. You should also anticipate using your time in Maui for resting & relaxing & not for site seeing, surfing, etc. ES surgery is major surgery. You’re likely to be very tired & sore for some time post op.

I’m sorry for seconding the bad news. Just want you to be realistic & enjoy your trip.
I’ll be praying for you, too.

:sparkling_heart:

Thanks so much, I appreciate it! Who did your surgery? Are you in US? Any medications help in the meantime. I have become severely depressed with these progressive symptoms

I will be emailing my Dr. tomorrow. Because he is a neurosurgeon and does many very complex surgeries, he said my surgery would be fairly simple. He said both sides would take a total of two hours. He made it sound like it is a piece of cake. Now I am very worried reading everyone’s comments. I’m not sure what to do :cold_sweat:

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Ilovemaui2000,

A surgeon can only estimate how long an ES surgery will take. (S)he cannot know for sure how complex the surgery will be until you are open, & (s)he can see the nerves/vascular tissues & their interaction w/ the stylohyoid ligament & styloid process.

Dr. Samji tells his patients that surgery will take 60-90 min. for a straightforward case. My first surgery took 2 hrs because my glossopharyngeal nerve was wrapped around my styloid process & needed to be carefully unwrapped in order to cut the styloid back. He could not know about that in advance.

It is important for you to discuss w/ your surgeon how much of the styloid he intends to remove & if he will also remove the stylohyoid ligament. If he is vague, you need to be assertive about requesting that the styloids be removed at the skull base, & that whether or not the stylohyoid ligaments are calcified, you’d like them fully removed as well. This will give you the best possibility of not having regrowth of the styloids or future calcification of the ligaments.

Bear in mind that doctors often “soften the blow” about recovery because they really don’t know how long it will take for a person to recover from a given surgery. Offering the best case scenario helps ease the patient’s pre-op anxiety. Additionally, the doctor himself only does the surgery & has never experienced the recovery aftermath so has no comprehension of what a post op patient goes through.

There are medications which help with nerve pain (info in the Newbies Guide section), antidepressants like Nortriptyline or Amitriptyline can help, other medications like Gabapentin too. They can take a little time to work, but worth trying. There’s more info in the Newbies Guide treatments section, but briefly either icing or heat can help, sleeping semi-upright helps, physio can help with tight muscles, & muscle relaxers like Baclofen also help. Also one members found lidocaine patches stuck on the neck helped. Also some doctors offer a lidocaine/ steroid injection into the area, which some members have found works. Doesn’t help everyone though, & can only be done a few times so isn’t a permanent solutiin, but could be helpful if you’re waiting for surgery.

Hi Jules

Thank you that’s very helpful. X

I have very similar symptoms and will be sure to mention this Friday at my appointment. Thanks!

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Hi jwise,
It seems that your story is a success. What is the name of your surgeon?

You had both sides done the same time intraorally? How did you make out the few days post op? I’ll be having both the same time intraorally Nov 6 and I’m scared to death :slight_smile:
How was eating? Talking? Swelling?

So glad you are doing well :slight_smile:

I had my surgery externally on April 22nd 2019. I can’t even explain how much better I feel. I had my surgery in Scottsdale Az. By Dr Milligan. He was amazing. He even prayed with me before surgery. The few things I’ve noticed is the severe cold makes me ache some. But nothing like I was. I’m living my life again after 6 years. God is good.
Margret

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That’s great news, really pleased for you!

Hi Margret,

I’ve thought about you recently & wondered how you’re doing. So glad you gave us an update. I hope your move went smoothly. That was a huge undertaking so soon after surgery!

Thank you :blush:

The extreme cold makes my eagle pain worse. Is this temporary? I’m just 6months out. I’m hoping it gets better.