Eagle after tonsillectomy

[Koru]

Hi everyone,
I’m new here, done some research on this helpful site and things are falling in to place.
(Sorry for the language and grammar, i’m from the netherlands).

In 2014 i’ve had a tonsillectomy. The doctor told me that on the left there was a huge inflammatory tonsil which was deeply removed.
Ever since i’ve had the constant feeling of something stuck in my throat.

I went back to the ENT doctor 2 months later, who made a CT scan (with diagnose question eagles) which then showed no abnormality. He told me the scar tissue needed 2 years to recover. And it would probably get better.

Actually, it got worse, and because of the normal ct scan, I dropped the idea of eagles and started living with them.

Following symptoms started, all on the left;

• Feeling of something stuck in my throat.
• occipital pain + tensed neck and shoulder. All the time.
• numb feeling on the left side of my head.
• dizziness
• Vision problems.
• tongue cramps. (horrible)
• oculair migraine. (no headache migraine, only visual aura).

All of this started after my tonsillectomy and it gotten worse last year. My left eye sight is giving me troubles and the feeling of " light headed" on the left as well. I wear shady glasses a lot of the time.
Next week i’m off to another ENT doctor who is familiar with eagles.

I’m 100% sure that i have developed eagles after a tonsillectomy, and the thought of maybe getting surgery and find relieve of all this symptoms makes me looking forward to it.

My questions for you are;

What kind of form can you develop after a tonsillectomy.
I’ve read about the enlonged ligament, the calcified ligament and the vascular form.
Can all forms of eagle develop after this surgery? Or just the scar tissue tightening around the ligament?
What kind of eagle makes me experience all this symptoms. I recognize myself also in the vascular one. (dizziness and eye sight problems).

• Next week, at the ENT, what kind of check ups should I point to?

• Can eagles after a tonsillectomy be fixed with a new surgery? Any experiences?

Some extra information;
Last year, I suffered a very small cerebral bleeding, the ct scan showed a cavernoma, which is a small packing of abnormal venous blood vessels.
The symptoms (numbness, eye sight and pain) I had were not understood with the cerebral condition, because of the location of the cavernoma.
Which made the small bleeding look like a chance hit.
Cavernoma rarely give symptoms.

Thank you all for reading my story, I hope you can help me out a little!

[Isaiah_40_31]

Hi Koru!

Welcome to this wonderful forum! So glad you’ve read some of the information here & have begun to inform yourself about ES. Eagle Syndrome is by definition either elongation of the styloid process(es), or calcification of the stylohyoid ligament(s) or a combination of the two. Sounds like you might have a bit of both - elongated styloid & calcified ligament. Most cases of ES seem to have some type of vascular component in addition to the traditional symptoms. The vascular symptoms you’re experiencing are common ES symptoms & can be caused by compression of the carotid arteries or jugular vein or both.

Traditional ES symptoms are throat pain, something stuck in the throat, ear pain, jaw pain, occipital pain (in the back where the styloids attach), eye pain, tongue issues, tinnitus, voice loss, stomach issues, among others. Though all symptoms are related to nerve irritation, there are some cranial nerves that are more commonly bothered by ES - the vagus nerve which affects heart rate/blood pressure, gastrointestinal function, anxiety (to some degree); accessory nerve which affects shoulder function/pain, glossopharyngeal & hypoglossal nerves which affect tongue function/sensation & throat, facial nerve which affects facial muscles.

Since you’ve already had a vascular problem in your brain, it might be worthwhile asking for a CT scan with contrast. Vascular compression often only shows up when your head is in a particular position where the styloid or calcified ligament is actually pressing on the vessel in question. You should pay attention to see if there is a head position or positions that make(s) your dizziness, vision problems, ocular migraines, etc., worse. If you find one, then have the radiologist do a scan of your neck while your head is in that particular position (in addition to doing the regular scan). If you don’t have contrast, this is not necessary as the soft tissues (vessels) won’t be visible on the CT scan.
To quickly answer your specific questions:
Any form of ES can occur after a neck/throat surgery or injury. The symptoms are based on the angle, length & thickness of the styloids/calcified ligaments.
Eagle Syndrome doesn’t always occur after a tonsillectomy. In your case, though, it is possible the scar tissue build up that put pressure on the styloid process &/or the
s-h ligament & caused your body to lay down extra calcium where it was not needed produced ES.

Do ask your ENT for a CT scan. Also, if (s)he does ES surgery ask if it will be done intraorally (through your throat) or externally (through your neck). The external approach allows the surgeon to cut the styloid process off at the skull base to help prevent regrowth & remove the ligament. It also allows for monitoring of the cranial nerves & vascular tissues so damage to them can be prevented.
The intraoral approach gives quicker access to the styloid process but it can only be shortened, not totally removed & the ligament can’t be removed by that route. It also more difficult to visualize the nerves & vascular tissues during surgery. That said, quite a number of people on this forum have had successful intraoral ES surgeries.

By the way, your English is wonderful!

I hope all this information is helpful & not too confusing.

[Jules]

Second all that! It would be interesting to see the CT scan; unfortunately not all doctors use the same ‘scale’ for judging styloid process length, some think even up to 4cms is ‘average’! & also the width & the angle can make a difference too. But definitely try to get a new CT with contrast.

[Koru]

Thank you so much for your reply! It really does clarify some things for me.
Good to have some information before my new appointment with the ENT doctor.
If i’m a candidate for surgery i feel the best way would be externally, seen the case of my occipitalis neuralgia. Right?

Do you know if it’s possible that the symptoms I experience, can change a little for day to day?
The feeling of something in my throat while I swallow is always there. But my neck pain and visual problems seem to be more or less on different days. They are much worse when i’m tired, hungry and sometimes when i get out of bed (seems to mee that lying on my neck sometimes makes it worse).

Have you had the surgery yourself?

[Koru]

Thank you for your reply! I sure want to make a new scan.
I also read about 3d scans (is this a MRI) or lateral photo’s what can make it better to diagnose. Sometimes it’s hard to diagnose?

[Isaiah_40_31]

Hi Koru,

Glad the information I posted is helpful. I will say up front that I’m biased toward external ES surgery because I think it’s safer & gives better access to the styloids & stylohyoid ligaments for resection. Your occipitalis neuralgia could be an ES symptom & thus having your styloids/ligaments shortened or removed by either method would be a good idea. I don’t know if external would be preferred over the intraoral approach w/ your occipitalis neuralgia problem.

Good observations regarding the transient quality of your ES symptoms. They can vary from day to day & sometimes from hour to hour. As you have observed there are some that are constant & some that are better at times & worse at times. This is very normal. I had worse neck pain after lying in particular positions while I slept so had to learn the best ways to lie to try to prevent that happening. My symptoms changed & worsened after exercise, if I was dehydrated, too tired, & sometimes for no reason I could note, just as you have seen in your situation.

I had 2 surgeries as I had bilateral ES. My right side was done first as the angle & thickness of that styloid & partially calcified ligament seemed to my surgeon to be of higher priority. I had the second side done 8 months later. Would have done it sooner but had a bike accident w/ a head injury! between surgeries that delayed the second one.

Regarding the scans - CT scans are usually done in slices like an MRI, but they are can also include 3D views of the area being scanned. My radiologist added four 3D views of my neck & styloids. I will attach an image for you to see.

I hope your ENT appointment goes well & you’re able to make progress toward getting ES taken care of. Do advocate for what you want. Don’t let the doctor intimidate you or make you feel like you don’t know what you’re talking about. Learn as much as you can from research articles on this forum (found in the Newbies Guide) or online & even print some that are relevant to your situation & take them with you. This will help the doctor to know you’ve “done your homework”.

Please keep us posted.

[Jules]

Lots of members have found that their pain varies day to day, or at different times of the day, sometimes for no reason! I couldn’t lay on my side, nor lay flat at night as it would make symptoms worse- I tried a wedge & a V shaped orthopaedic pillow which helped a lot, might be worth trying.
I don’t know that either type of surgery would make occipital neuralgia less of a risk; external surgery gives better vision of the are when a surgeon is operating though. Most surgeons seem to use monitors on the nerves to make sure they’re not being affected by the operation- if you get to a point of having surgery you should check that with your surgeon.
CT scans are generally the best scans for diagnosis as Isaiah explains.

[Koru]

Well, I’ve had my ENT appointment today.
To be honest, it was very big disappointment. I’ve met a ENT doctor who is still in the traject of becoming an ENT doctor.
He did not listen at all and was very bothered by the fact that i’ve done some homework myself.
He touched the scar of my tonsillectomy and said he didn’t feel an elongated structure and therefore it couldn’t be eagle. He also had a look in my throat and said he couldn’t see anything unusual.
He did feel a little painful salivary gland beneath my tongue, and that’s why he now wants to make a MRI.
I asked him if any of my symptoms could be caused by that, and the answer was no.

So why not a CT to have a look at the styloids? He did not want to because of the examination in my throat.
He was going to have a look at my old ct scan, form 4 years ago.
I told him that that was only 8 weeks post op after my tonsillectomy and since then in the 4 years time my symptoms got worse. Still he wants to make a MRI which is not helpful for eagle diagnosing right?

So help…Please…
Is this true? If the bone is calcified, do you need to feel it as wel when you put pressure in the area of the tonsills tissue?
I did some internet research as well, in the Netherlands not a lot of ENT doctors perform the eagle surgery. But dental surgeons do.
I’m not sure to what path i should be taking, as this is a complication of a ENT surgery.
But I can’ t find any information about an eagle syndrome ENT specialist.

What are your recommendations?
Any help would be great, because this is such a disappointment.

[Isaiah_40_31]

Hi Koru!
I’m so sorry for your experience. As much as I hate to say this, “Welcome to the club!” Very many people on this forum have been “rejected” by ENT doctors who told them they did not have ES when in fact they did. Often the elongated styloid or calcified ligament can be felt in the throat or neck but NOT always. Sadly, there are many doctors who won’t diagnose ES unless specific symptoms are present which is also wrong. All aspects must be considered - the symptoms & the physical structures. I had bilateral ES but only one of my styloids could be palpated. The other was growing more straight down & thus was deeper in my body & untouchable.

I just did some reading online about CT vs MRI scans, & basically, bones are visible in both. The MRI adds soft tissue details lacking in a CT scan unless the CT is done w/ contrast (i.e. dye is injected into the body before the scan). A CT scan is quicker & less expensive & doesn’t have the disadvantage of the loud banging sounds & possible claustrophobia that an MRI recipient is exposed to. Since it’s your body, you should try to impress upon the doctor that you’d appreciate his allowing you to have a CT scan to look at your styloid processes & stylohyoid ligaments first, & if that doesn’t provide whatever info he’s looking for, then you can consider an MRI. An old scan from 4 years ago will not be accurate to your current situation. You may not have had elongated styloids &/or calcified stylohyoid ligaments 4 years ago thus reviewing that scan wouldn’t go very far in explaining your current symptoms. If this ENT isn’t willing to work w/ you, perhaps you should try to get an appointment w/ one of the dental surgeons you found who does ES surgery. It’s very important to have someone who knows about ES & who will help you pursue the proper tests to determine if you have it.

[Koru]

Thank you again for your reply. It’s really helpful.
It’s been so helpful that I’ve decided to go to another ENT doctor. I work in the operation room myself and saw an ENT doctor who once in a while I work with myself.
I’ve asked him about my case. He really wanted to see and help me and asked me to come by his consult hour.

But I’m a bit in doubt. I think he is a good doctor who knows a lot and has a lot of experience, but I’m not sure if he knows eagle very good. What is your recommendation in this?

Very interesting case you experienced yourself. It has been a long story for you as well? How are you doing now? Life must have changed for you in a good way?!
I’m feeling exhausted every day at the end of the day. I really hope I will get some clarity soon.

[Isaiah_40_31]

Hi Koru,
That’s a good plan. A second opinion is a wise idea. If the ENT doctor you know from the operating room is interested in your case, you should see him. Even if he doesn’t know about ES or doesn’t know much about it, it sounds like he’s interested in learning more. It’s always good when we can teach our doctors new things. You should take information about ES that you’ve gotten from this site, and print some of the research articles you can find in the Newbies Guide to ES (use the magnifying glass above to search for it) where symptoms similar to yours are discussed. Going to an appointment armed w/ good information is often helpful. Perhaps he will surprise you & know more than you suspect! The doctor who diagnosed me was a very experienced ENT, but I didn’t like his description of how he would do my surgery so I got a second opinion. I am very blessed to live near where Dr. Samji works so was able to see him & have him do my surgeries.
My story is actually short (another blessing!). I had pain in my neck starting in July 2014; found a lump under my jaw; saw my primary care doctor who tried to give me antibiotics (I didn’t take them) for an infected salivary gland; then a month later saw my gynecologist who referred me to an ENT doctor & there I was diagnosed (Sept. 2014). Saw Dr. Samji in Oct. 2014 & had my first surgery Nov. 2014 & second one Aug. 2015. Life has vastly improved for me. I’m good as new! I did end up w/ first bite syndrome, a little persistent facial pain & some facial numbness but these are very small problems & not at all troublesome compared to my ES symptoms. I am easily living w/ them.
I will be praying that you’re able to get a diagnosis soon so you know how to proceed w/ your care. The second ENT sounds promising. I am sorry it’s been hard for you to find the right doctor to help you.
Please keep us informed about your appointment if you see him.

[Jules]

I agree that it’s worth seeing the doctor you know, even if it is just to educate him. Otherwise maybe you could try a skull base surgeon/ otolaryngologist, or head & neck cancer surgeon, as they would be confident operating in the same area as the styloid processes. Because the symptoms are felt in the throat, most members have always seen ENTs, but quite a few members are now seeing the other doctors mentioned who have been willing to do the surgery.

[Koru]

So i just got back from my second ENT doctor. Better conversation although it seems likes this doctor isn’t a eagle specialist as well. He told me that eagle is something you carry with you from birth.

But, I’ve got my appointment for a ct scan with contrast. Good to have those, in case I want to take them to other doctors.

Can you tell me what a calcified styloid looks like on a ct scan? I wanna have a look myself as well

Thank you again, for helping me out with this diagnosing.

[Jules]

If you look on google images for elongated styloid processes in CT scans you’ll find lots on here. Or you can use the magnifying glass icon to search the discussions for pics members have posted.

[Isaiah_40_31]

When you get your CT scan, ask the technician if he can take some 3D images. My CT scans came w/ four 3D images so I could clearly see my elongated styloids rather than trying to figure out what each slice of the CT scans was showing.
I’m including 1 picture here so you can see what I mean.