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Eagle Syndrome - Online Support Group

Deciding on eagle's surgery

Hi there everyone,

I have been messaging with someone who has helped me greatly. I have bilateral Eagle’s syndrome. My right side styloid is 5.6 cm and left is 2.3 but on rotational CT my C2 rotates left ward so both left and right are compromised. My ligaments are very calcified and palpable on exam. My symptoms include:

Neck weakness
Upper Trap weakness, lower trap weakness
Thoracic outlet syndrome
Facial quivering
Hearing loss, difficulty with ear popping
Hoarse voice
Difficulty swallowing and tongue control
No tears
Flexing my head creates changes in vascular tone in my legs (maybe carotid sinus affects)
Flexing head causes dizziness, passing out
Preference to keep head in extension (I assume that increases blood flow to brain)
Horner’s pupil (asymmetry of pupils)
Nausea at times when I awaken. worse when sleeping on back
Hyoid bone at C1-C2 level

My questions include:
Does this sound like Eagle’s?
Is this ever a reaction to instability? The body’s way to create more stability
What does recovery entail? What to expect?
Who would have the most experience with a complicated patient (Samjii or Cognetti). Cognetti approved me for surgery and Samjii will speak to me next week
Risks of procedure versus benefit
If it is bilateral, will removing one side first cause problems before second side is removed?
Is a venogram ever necessary. Cognetti says the risk of surgery is low so he does not believe in invasive procedures.

Thank you so much.

Jen

Hi Jen,

Here’s more info abt the vagus nerve. It also affects the gastrointestinal tract & nausea/GERD type symptoms are very common w/ ES. The vagus nerve can cause symptoms from skull base, to throat/voice, to bp/heart & down to the gut. It’s the most extensive of our cranial nerves & often causes many of the symptoms we suffer from ES.

Many of your symptoms definitely sound like they could be due to ES- unfortunately we can’t say which would be resolved by surgery, it’s something you just have to wait & see…
It seems reasonable that the cervical instability could cause an inflammatory response in the body- we know that neck trauma for example is a cause of ES. And we have had quite a few members with Ehlers Danlos Syndrome, as well as cervical instability. Both Dr Cognetti & Dr Samji are very experienced surgeons; Dr Cognetti is obvs happy to take your case, & I believe that Dr Samji has taken on patients with EDS so that shouldn’t be a problem. But worth asking how your neck problem might affect recovery.
There are risks with surgery- the doctors will explain this to you- of nerve damage or a stroke, but this is very are, & especially so when you see an experienced surgeon. Nerves are monitored during surgery so the doctors can keep an eye on them & any stress the surgery’s causing. As for risks vs benefits, I would say if you’re getting vascular symptoms, then surgery is highly likely to help, vascular symptoms often improve very quickly after surgery. And it’s worth bearing in mind that there are risks to leaving the styloids in if they’re compressing blood vessels- risks of a stroke for example, or a heart attack or stroke, although I would stress that these effects are very rare. Again though, you would need to discuss how much the neck instability would affect recovery, that’s a bit more specialised…
If you want to know more about what to expect after surgery, there’s lots of detailed discussions, you can use the search function for that. But basically expect to not be able to chew well for a week or 2, so be prepared with soft foods, smoothies etc. There could be swelling, so have extra pillows handy as you’ll need to sleep semi upright, & have ice packs ready. The days 3-5 are the worst for swelling, so be prepared to feel rough then. Also nerves can take even up to a year to heal, so don’t expect too much too soon, & there will be many ups & downs in recovery. There’s also a ‘surgery shopping list’ you can search for with suggestions for what to get ready.
If you have bilateral ES, the least affected side can sometimes ramp up after surgery, yes, unfortunately! The surgery can shift things about, & perhaps slightly alter the hyoid bone if there’s been calcified ligaments, but it doesn’t always happen. And hopefully you’ll notice vascular improvements quickly in the side operated on which should help you feel better. There’s usually a 3-6 month gap between surgeries, although this will depend on recovery.
A venogram’s not always necessary- it sounds as if you have maybe more compression or irritation of an artery, so a venogram would show just the veins & any affect on them. A CT angiogram would perhaps be of more use, but often surgeons are happy to operate without this, Dr Samji doesn’t ask for this either. If they don’t need one, then best not too as the dye used can occasionally affect some people.
Hope this helps? Let us now how you get on with Dr Samji & what you decide!

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Thank you so very much. My instability has been very minor of late. My neck hasn’t popped or cracked much. A panorex three years ago interestingly demonstrated Eagle’s and was caught by the radiologist, but I did not pay attention to it. I did stem cells for the instability to my alar and then the Eagle’s became much worse. I think the inflammation from the stem cells introduced through the pharyngeal space made my Eagle’s worse but improved the alar laxity. Catch twenty two. A great PT in OSLO diagnosed the Eagle’s and feels that my neck positioning will always be an issue because of the Eagle’s. I am the typical long necked thin female without much space between my cranium and neck unless I have an extreme forward head…

Interesting about the trauma theory.

Thank you again!

I will let you know how the consult goes. Cognetti is still doing cases and has me slated for June 5. But I heard that Samji takes out the whole styloid process. Do they remove the styloidhyoid ligament or just the calcifications. Cognetti removes just the calcifications it seems.

If the there is calcification on the stylohyoid ligament, Dr. Samji removes the whole ligament. Mine had spotty calcifications. Over the course of two surgeries he removed both styloids & both stylohyoid ligaments.

Dr. Samji resumed doing surgery as of this past Monday. You will have to ask him about his schedule when you have your consult. He might be able to fit you in sooner than June if you elect to come this far.

Thanks so much. It’s hard to weigh the risk and morbidity (suffering) of Eagle’s against the risk of being in a hospital like setting during COVID. Any thoughts on this, though it is probably a personal decision. How does the hyoid bone function without the ligament? Cognetti seems to take off the calcifications only. How would that complex function without the ligament structure to secure the bone? I guess there are others…

Dr Cognetti will remove the styloid processes if they’re long as well as the calcified ligaments, both doctors do, the only difference is that Dr Samji removes the styloid back to skull base if possible, whereas Dr Cognetti will leave a little bit of styloid.
As Dr Samji does surgeries as an out patient clinic (I think Dr Cognetti does too), there’s less risk of catching a virus than if you stayed in hospital overnight. You would have to ask what screening process etc, if any, they go through for COVID, before patients have surgery.
We get asked alot about how having the ligaments & styloids removed affects swallowing etc (even if just SPs are removed they have to detach the ligaments from them too), the answer is it doesn’t seem to affect it all in most cases! Why I don’t know, as they do have a function, but there we go!
Hope this helps?

I asked the ligament function question of Dr. Samji before I had my first ES surgery. He said the s-h ligaments play a very small role in helping with swallowing. You are right about there being other ligaments that help support the hyoid bone thus removal of the s-h ligaments is basically a non-issue.

Here’s a quickie explanation of those ligaments:
https://teachmeanatomy.info/neck/bones/hyoid-bone/

Jen,

Have you checked into intra-oral approach with robotics. I had both sides removed at the same time and basically I had one of the best results from what I read on this website. There are not many specialist trained in robotics. I live near Chapel Hill NC and I used Dr. Trevor Hackman. I had all the systems you are talking about and more. Dr. Hackman also is a vascular surgeon. He was rated by other Dr’s nationwide as the doctor they would want to have do there procedure.
I met a nurse at Chapel Hill from California and she had her surgery in California. Not sure who she used but said he was very experienced with Eagles. She had extra oral and she has permanent nerve damage and her neck got infected. She was amazed at how well my surgery went. It is worth looking into but again finding a Head neck surgeon trained in robotics isn’t that easy. Good Luck and I hope you feel better soon.

Adriene

Thank you so much Adriene! I will contact his office immediately. How are they able to remove the styloid and calcifications well intraorally? Sounds like the field would be hard to see. What year did you have it done in?

What was your recovery like since it was bilateral? If you don’t mind me asking, I would greatly appreciate speaking to you by phone regarding your symptoms and recovery. With COVID, I am a bit hesitant to do it but my nerve impact is significant.

Thank you again!

The only way they have good vision on everything is with robotics. The Robot allows them to get to places they could not without it. I had it done at UNC Chapel Hill Hospital. When you call to schedule an appointment it would be with Trevor Hackman. It takes a while to get in with him . They will probably want what records and images you have. He removed the both styloids and the styloid ligament at the same time. My styloid was pressing on the carotid artery. The relief I got almost immediately was amazing. They had several holes in my mouth for a while . They have to cut to assess them but again they can see everything so the risk of hitting a nerve is much better. Honestly it was so much easier than I thought it would be. It was also nice since you are cutting near vessels that he is also a vascular surgeon. Just goggle Dr Trevor Hackman UNC Chapel Hill and you can read the reviews and the honors he has. It says a lot when surgeons vote across the country on whom they would want to operate on themselves. Not much more of a higher recommendation than that. Good Luck!.

I emailed him directly. I called and no one answered. So your recovery was how long would you say?

My right styloid indents my carotid in neutral head position.

You did not need a venogram?

How long until nerve symptoms improved?

Did you have arm symptoms?

Thanks again!

Jen

As you know how terrible it is (I have vagus nerve issues as well), would you do it in the covid era?

Why do you think you had eagle’s?

Thanks again!

Jen,

You can privately email adriene61 by clicking on her name as it appears above her post. This will put you to a page where you can start an email thread w/ her.

my wild headaches stopped immediately. I had to lay in bed every day for about 9 months because if i moved my head I would have shocking, stabbing headaches. I also had positional headaches. I would honestly say it took about 3 months to feel like myself again. It’s still a big surgery, just safer. They cut like five I think circular wholes inside your mouth to access everything. My son has several surgeon friends from all over that he went to duke with. One head neck surgeon he had dinner with a couple of months ago said I was very lucky as they are not many trained in robotics. Read about the Divinci robot. The hole inside your mouth take a good five months to heal. But the inside of your mouth is about the easiest part of your body to heal. The most annoying to me was when the stitches sometimes where hanging down as I was healing. I would just have them trimmed. I actually did it myself most of the time. I had my tonsils out in my forties and I would say its a little worse than that but honestly totally worth it to relieve the symptoms. I honestly had about I say 90 percent better right away. I still have some nerve problems not related to eagles. I have several spurs between c5-c7. But again so much better. It was like a miracle for me. The mump feeling or tmj feeling went away immediately. I had that for at least a year. It will take you a while to get in as he is in high demand but totally worth it. The nurse I met who had it done extra orally said it took her years to heal and again she got a very bad infection and permanent nerve damage. I’m sure either way is a risk but again they can see more with the robot and it is less invasive. I don’t think they would do it in the covid era. All of Chapel hill until at least May 8th are only seeing patients by zoom or on the telephone unless it is life threatening. If they will go ahead and schedule an appointment that would be good at least you could consult by phone and send your images etc to go ahead and get in as early as possible when they open in person appointments back up.
I am not sure why I got Eagles but I can tell you since I was college age my body over produced calcium. I had major bone spurs removed from my foot when I was only 17 on the heel. I had double knee replacement and had to go back in within a year. I got knee lock from so much scar tissue and bone spurs. The doctor said he took out like 3 shot glasses full of spurs. Every time I go the doctor I have bone spurs everywhere and excess scar tissue. So I think it has something to do with that. Several test have shown autoimmune disease and connective tissue disease but they don’t know exactly why this happens to me.

I hope they will figure it out one day. i hope you can get scheduled as soon as possible with all this craziness in the world. Again I think it would be worth while to see if you can at least get a call or video appointment so you are in line to get there ASAP and you will know what all he needs.

It took two years to figure out I had Eagles. I was at Duke and that is where Dr. Eagle discovered the disease and they never found it. I just kept going to specialist as I really thought I was going to die.

Dr. Hackman figured it out immediately.

Where are you from if you don’t mind me asking?

Best of luck!

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following. super interesting

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HI Jennifer,
given your scans show eagles and the symptoms many of us have, its probably safe to assume alot of this is caused by eagles. Ive have Ehlers Danlos hypermobility and had neck instability for years. I have bilaterial eagles and just had Dr. Samji do side one 10 days ago. Check out the post One Styloid Down for more detail. Others can post more about potential symptoms once one side is removed. So far I am very pleased with my results and will likely schedule the other side in later summer, early fall. I personally was starting to experience such severe pain flairs (started in 2015 and worsening), I was desperate for relief. Enough for me to travel and get this “pain” out of my neck/ear. I live on the west coast and Dr. Samji was an easy choice. I did my research and preferred the external approach. Faster recovery vs scar helped me decide that. Hope that helps. Good luck on your decision.
snapple

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Thanks so much. I will likely go with Dr. Samjii. He said my styoid was one of the longest he has seen but my neck is very weak so I’m trying to condition a bit. He felt that with the spinal accessory affected, it would be challenging. Did you have weakness and Preop or just pain?

Thank you!

HI jennifer,
My neck /shoulders has been weak on and off and any gains I have made with occupational therapy to strengthen overall (core, back & neck) which is important with ehlers danlos usually backslides when I have severe pain flairs because it stops me in my tracks and all efforts to strengthen end. It seems a vicious cycle. I have been lucky to have found an excellent Occupational Therapist but doubt I will revisit appointments with her until after I do my other side. I have to be super careful with types of strengthening on on neck because any slight overdoing it kicks up pain. Given all your symptoms, Id use caution and question whether it is worth triggering them. Although she has given me some very mild exercises, I’m just ignoring those efforts and honestly not too good on follow thru. Maybe next month when I get some more healing under my belt?
Im pretty certain our bodies (muscles and ligaments) stretch and contract in the neck and trap/shoulder area in reaction to the foreign bodies (calcification) and inflammation causing a cascade of problems. Ive had many of the same issues as you. No matter how much body work, massage and the like, it seemed to always returned (tight muscles and pain). Our bodies seem to hold and protect to avoid the most pain putting it out of balance. I have no doubt I have held me neck angled to avoid pain. As drugged as I was after surgery, I shared that my shoulder pain from neck was gone. Its still early on but I am hopeful with these calcifications out, the inflammation will just plain go away and muscles/ligaments start to relax and I can get to the business of strengthening and balancing.
I thought that styloid seemed a bit long. If Dr. Samji says its one of the longest he’s seen, that says alot since he has by far seen more than most. LOL. A majority of Dr. Samji’s practice (I think 80%) is related to cancer in neck,etc and I get the impression he deals with some pretty narly complicated conditions. Dr. Samji is clear he cannot promise the surgery will resolve all symptoms as so many of us have such varied unusual symptoms. U have many we all have. Im happy just to get some relief whatever the %!
FYI: The stand alone surgery center where Dr. Samji’s does his outpatient procedures is currently only open part-time due to COVID and only opened a couple weeks ago. They screen before you come in the door and don’t allow anyone into the surgery center with you. I was in the door at 9:30am, surgery at about 10:30 and I think out the door by about 2? It was pretty quick.
I flew into San Jose in the evening with only 5 people on plane and the airport was deserted. I rented a car instead of uber or taxi. The airport just started requiring masks in the airport. Santa Clara county public health department is (in my opinion) one of the more competent health departments in country. The hotels are empty and prices are unusually low. I personally felt safer doing this in the current environment due to a higher level of caution in the healthcare setting as well as lower volumes.

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