Eagle Syndrome diagnosis and have surgery scheduled with Dr Annino

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Hi there! I actually joined the group a few months ago but have been sitting back and reading discussions while awaiting my appointment. I have had some very helpful conversations with
Isaiah_40_3.

I met with Dr Annino back in June and he confirmed a diagnosis of Eagle Syndrome. I have a very long styloid on the left, he said it is about 6cm. I am also elongated on the right, but not nearly as much. I also have calcification on both sides.

As many of you, I have a lot of really weird symptoms that other doctors have not been able to find causation for. For years I have had many unexplained aches in pains in and around my face, shoulders, and arms, and most recently have been having increased pain in the sides and front of my neck. I have started having episodes of extremely painful swallowing. It will hurt really badly on the first swallow, and then just goes away. Sometimes it lasts off and on for an hour, sometimes it only happens a couple of times, but it only occurs in the morning and seems to happen more often when I wake up feeling like I’ve slept wrong and my neck is sore. I have previously been diagnosed with chostochondritis, TMJ, crichopharyngeal spasms, GERD and fibromyalgia, and probably some other things I can’t remember right now. I get random stabby pains in my head and sometimes get pain behind my eye and sometimes my scalp is sensitive to the touch (I’m guessing nerve pain). I also get small bouts of dizziness/vertigo/lightheadedness from time to time and I hate driving on the highway because of it. For some reason it is more likely to happen when I am driving faster. I have no idea if it’s related to Eagle’s, but it’s like too much input for my eyes and brain to process all at once.

Dr Annino said that he believes I have Eagle Syndrome and that surgery will help alleviate a lot of my symptoms. He will do the left side first and if I experience some relief, he will do the right side a few weeks later. He did mention that my left styloid is closer to my C1 than the right and he indicated he would be doing the surgery externally. He said if he went at it from inside, he wouldn’t be able to access the area behind my ear, where he suspects nerve involvement.

My surgery is scheduled for September 18th, a week after I return from vacation.

I am feeling very nervous because I only met the guy once and I really don’t have a full understanding of how serious this surgery is. I left with the understanding that the riskiest part of the surgery is nerve damage, but really, how risky is this surgery just from a surgery standpoint? I mean, I know all surgery carries risks, but is this like removing an appendix or more like open heart surgery…that’s where I need some assurance.

My husband works from home so I will have all of the support I need, thankfully. I have an adult daughter with special needs (she is high functioning, but emotionally needy) and she will stay with my sister for a few days while I recover so that I can have quiet. Fortunately, the hospital where the surgery will be is only about an hour away from home.

I could use some assurances and encouragement from anyone who would like to offer :grinning_face:

Images are below.

Thanks,

Joswan70

Right styloid CT
Right styloid CT766×803 72.3 KB

Left styloid CT
Left styloid CT700×803 73.5 KB

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There’s an upload icon at the top of the text box when you post if you want to attach images…

Great that you have a date for surgery! And external surgery is safer than intra-oral surgery so good that he’s doing it this way…I think we all feel anxious about the surgery, but like you say, there are risks with any surgery. Obviously it is a bit more tricky with this area of the neck because there’s blood vessels and nerves in a cramped space, but as you’re seeing an experienced surgeon he’ll be used to working in this area. The facial nerve and the spinal accessory nerve are the ones which can get irritated during surgery- if the facial nerve is affected you can have some facial paralysis, weakness and sometimes a droopy smile or eyelid, but this improves with time and there are techniques to help if it happens. The spinal accessory nerve can cause weakness or pain in the arm or shoulder, again this usually resolves with time, or sometimes members have had to have PT. It’s not as risky as open heart surgery, but with any surgery there’s a slight risk of bleeding or a stroke! There’s info about the surgery and what to prepare for it in this section:

ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle

The surgery shouldn’t be undertaken lightly, but most of us get to the point where the symptoms are affecting our quality of life so much that it’s an easy decision, and for some, with Vascular ES especially, there are risks to leaving the styloids in.

It’s really good that you don’t have far to travel, and that you’ll have someone with you. You’ll likely be a bit tired afterwards, pain levels vary so if you are in pain then take your meds regularly to keep on top of it. But not everyone needs strong medication. Swelling can be an issue, so using ice packs helps with that, and resting and sleeping propped up helps. You might have trouble chewing or opening your mouth wide to start with, so it’s a good idea to get smoothies or soft food in ready. Some people get ‘first bite syndrome’ which is where you get a sharp pain in your cheek at the first mouthful of food; this usually improves quite quickly and keeping hydrated helps.

I’ll pray that you’re surgery goes well :folded_hands: :hugs:

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@joswan70 - I’m really glad you have a surgery date that’s not too far away. We’ve found over the years that with bilateral ES, there are often symptoms that don’t go away when only one styloid is removed so the second one needs to be removed, too, for those to go away. Some doctors have refused to do the second styloidectomy when there are symptoms remaining after the first styloid is gone. This doesn’t make sense since the remaining styloid could be to blame for what remains, even if it’s on the side of the removed styloid. Crossover symptoms are a reality. I believe Dr. Annino is aware of that.

If/when you have the right styloid removed, make sure he will also take out the significant section of calcified stylohyoid ligament that is attached to your hyoid bone as leaving that in could very likely leave you with symptoms even after your right styloid is gone. I’ve annotated it w/ an aqua arrow:

Right styloid CT
Right styloid CT766×803 86.2 KB

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@joswan70 Having those long styloids and the calcified ligament removed should help you feel better soon, so I am glad you have a surgery date. My styloids were small in comparison, and I experienced significant relief once they were completely removed. I do not know anything about your surgeon, but you may find information from others who have had surgery from him by searching this forum. Risks are reduced significantly based on the experience and skill of the surgeon and the hospital support staff. There are nerves, veins, and arteries around the styloids and the ligament that have to be managed during surgery. Based on my experience, which thankfully does not include open heart surgery :slightly_smiling_face: , the styloid removal has more inherent risk than appendix removal (which I have had), but significantly less risk and recovery effort than open heart surgery, which I have only heard about.

The information provided by forum members on their experiences with different surgeons helped me choose my surgeon, and provided valuable information on what to expect during recovery. Most helpful for me was to have a good supply of ice packs for pain and swelling, soft food, and a way to elevate my head to sleep. If you plan to take opioids for pain, have a good stool softener available and start taking it when you start the pain medication. I needed a sleep mask and eye gel for a month because I lost control of 1 eyelid from nerve damage. Also had to find a really soft pillow with a hole in the middle because I had both my styloids removed at the same time. The incision sites around the front of my ears were tender for a few months and I was a side-sleeper, which was challenging. Ask your doctor what type of incisions you will have so you can plan for special pillows, if needed. For my smaller styloids, recovery was not bad. I took it easy for a few weeks until incisions were healed, but did not have any period of bed-rest other than normal sleeping at night. The calcified ligament may require a different incision pattern for removal and more recovery time, but your doctor will give you better information about what to expect.

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Thank you all for the input, I really appreciate your thoughts. Sorry it took so long to reply, my way of dealing with the anxiety surrounding this whole issue is to put it out of my mind until I have to think about it. Tomorrow I have an informational appointment with Dr Annino so that I can learn exactly what the plan is regarding the procedure and pains meds, etc. All I know for sure from our last appointment is that I will have an overnight stay at the hospital because he likes to leave a drain in the site.

Feeling nervous, but I feel like this appointment tomorrow will help with some of that. Hoping having more information will alleviate some anxieties instead of cause more LOL.

I have a vacation scheduled next week and then when I return, it will only be 7 days until surgery! It’s creeping up fast!

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@Joswan70 - I’m glad you have a vacation a couple of weeks prior to surgery. It will be a nice time to step away from thinking about everything & will help shore you up emotionally & mentally. I think you’ll find the surgery isn’t as awful as it may seem to be. It’s uncomfy for the first couple of weeks but our bodies get right to work to start healing so if you take it easy & don’t overdo when you start feeling better i.e. start back into activities w/ baby steps not by leaps & bounds, you should start feeling better w/in 6-8 weeks. :blush:

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Having a drain in afterwards is good for helping with swelling & infection, I did find it was really uncomfortable after surgery, it was hard to sleep with it in & did keep pulling, very annoying so wanted to prepare you for that, but it is only one night!

I hope you get all the answers you need tomorrow, and that this reassures you. Enjoy your breat too! :hugs:

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Thank you all for the helpful info and tips!

My meeting with Dr Annino before I went on vacation went well and he really put me at ease.

I am back from vacation and headed out to stay at a hotel close to the hospital tonight. Surgery is in the morning. Prayers welcomed :slight_smile: Getting nervous, but I know this is God’s plan for me and I am confident of a positive outcome.

I will report back how it goes when I’m feeling up to it.

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@joswan70 You are in my prayers :heart:

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I’ll be praying for you too! Tomorrow is the beginning of the end of ES for you!! :hugs:

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Good luck!! Will be praying for you and looking forward to hearing about your symptoms decreasing! :yellow_heart:

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@joswan70 Thinking of you and wishing you great success.

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Praying all goes well :folded_hands: :hugs:

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Surgery went well. Dr Annino took out 5cm. He was concerned I may have trouble with the nerve that affects the tongue, but he ended up having no problems at all. No numbness or nerve issues. Yay!

Was given oxycodone after procedure but now just on Tylenol, hoping to stay with just that. I do have a drain in. Nurse said they’ll send me home around 9 AM after they take out the drain.

I definitely am feeling soreness in the area under my tongue and the glands there, which was the area of concern that set me on my Eagles journey. Feeling like it’s a good sign that it’s sore there as I’m guessing it means we’ve removed what was bothering it. Looking forward to how it feels (or doesn’t feel) after healing!

Feeling pretty good, the thing bothering me the most is my heart rate is sitting at 95-100 just sitting here. I have a history of anxiety so I’m not surprised my body is reacting to today’s events.

Will update after I have my follow up visit in 10 days.

I recommend Dr Annino without hesitation. He really puts you at ease and explains things like you’re just sharing a cup of coffee. He doesn’t make you feel rushed and gives you time for all of your questions. It has been a great experience having him for a doctor.

I was terrified before this experience, but can now feel confident about doing the right side in the future.

Thank you all for the well wishes and prayers, they are truly appreciated!

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Thank you for your update so soon after surgery, @joswan70. I’m so glad all went well! Having a 5 cm styloid removed should go far toward allowing your nerves & symptoms on that side recover.

Though you’re trying to stick w/ Tylenol as your pain medication, don’t work too hard to be “brave” & allow pain to get too intense over the next few days. We know that days 3-5 post op are when the swelling is the worst & pain can really ramp up so keep the oxycodone handy in case Tylenol doesn’t keep pain under control. It’s very important to take your pain med (whichever one you choose) on schedule. Going too long between doses can allow pain to get ahead & playing catch up is not fun!

Remember to sleep w/ head elevation of ~30º for the first week & ice your neck for ~20 min every couple of hours as those two things will help a lot w/ swelling reduction which helps lower pain level, too. If you do take the oxy for several consecutive doses, make sure to add a stool softener & laxative on those days so your “plumbing” doesn’t get clogged up. That’s no fun w/ a sore neck!!

I look forward to your 10 day post op report. :hugs:

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Thank you so much for the tips!

Not taking the oxy has more to do with the side effects for me, I am a lightweight and I feel the side effects of one dose for longer than normal. I am hoping I will be allowed to alternate ibuprofen and Tylenol. Historically that has been a great combo for me. I’m guessing ibuprofen isn’t being offered today because of the drain.

I will take the script for oxy if it’s offered, just in case things get really ugly. I know I was glad to have it when I woke up in recovery.

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I’m so pleased that you’re through with surgery & that your tongue wasn’t affected, that’s good news! I hope you heal well, and can get some rest now the drain’s out! Are you able to eat normally or is that difficult?

Thinking of you and praying for good results, and keep us updated when you can :hugs: :folded_hands: :bouquet:

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I totally understand! I have interesting side effects (besides constipation :grimacing:) from opioids as well.

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I made it home on saturday. I only took tylenol on Saturday but yesterday and today I am doing 1000mg tylenol every 8 hours and 400mg ibuprofen every 8 hours. I have zero pain, it’s working great. I had surgery on Friday, when do you think it’s safe to start tapering down on the pain meds? I’m thinking tomorrow? I hate to experiment and then have to work my way back up.

Once I got discharged, I discovered they were only giving me 650mg of tylenol every 6 hours. I don’t know why such a low dose, I really would have appreciated 1000mg. My pain levels did get as high as 5-6 even with the tylenol, but I didn’t want to take the oxycodone, so I toughed it out. I also found out they did give me blood thinner, which is why I wasn’t being offered ibuprofen. Thankfully, when I was discharged, the resident said I could start taking the 400mg of ibuprofen.

Feeling pretty good, the hardest thing is the broken sleep because I’m putting a pill in my face every four hours. Tonight I think I will chance sleeping through if I can manage it.

I will check back in after my post-op appointment next Monday. Because of the come and go nature of my Eagle symtpoms, I don’t think I will know for at least a month what has actually improved as a result of surgery.

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I’m glad that you’re home and are managing! I wouldn’t reduce the meds until after day 5, as swelling can peak days 3-5 so people often have a worse day then , so best to wait until after that? Hopefully you can juggle things enough to keep pain free :hugs:

Look forward to hearing how your post-op appointment went…

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