17 YEAR OLD - 3 days post-op

General
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Hello.

My name is Jimmy. I am a seventeen year-old high schooler in Oregon.

I’ve been in chronic pain for about three years, and I diagnosed myself with Eagle a couple months ago.

I finally persuaded a doctor to cut me open. I had ES Surgery three days ago (only the left side).

I have not experienced dramatic changes in my pain. Most of what I feel is soreness around / below TMJ and in the back of my throat.

I’ve yet to introduce my full story to this forum, but I intend to open up soon.

I’ve had a rough time with chronic pain - drug abuse, misdiagnosis, depression - but I am still moving forward. I’d love to share more and learn from this community.

I am just wondering, for those of who you are in a similar situation, and have undergone ES surgery, HOW SOON SHOULD I BE GETTING RELIEF?

I am assuming it will take a little bit longer for me than three days, but I’m wondering because it has been three years since I’ve felt good and my case has been very difficult.

Jimmy

Edit for Saturday, March 30:

Hey Guys! :sweat_smile:

I’m doing so much better than last week.

I got subtle relief on Thursday. It has been growing.

It feels incredible. I didn’t realize how much agony I have been in.

I’m hoping I continue to feel better and better! The joints of spine have been throwing a party. My cervical spine feels great.

I’m seeing my surgeon again next Friday. I will hopefully have a date for surgery number two (right side).

I’m knocking on wood, but I think I am actually getting better.

Hello Hadassa. Thanks for the wisdom. I am starting to understand the recovery process better. I think I was trying to get surgery so bad that I forgot to think about how things go after.

Margret, - I am glad you got a date. I love having a day to push for: it’s so motivating!

Hang in there.

Jimmy

Edit for Wednesday, April 3th:

Hey guys.

I am coming out of the cave of pain. I’ve been feeling some steady relief building the last couple days.

I’m off Oxycodone. Yay. Glad that mess is over.

Today, I officially told people that my surgery was a success.

I think my pain was flipping sides (left and right) of my head and neck. I mean like my nervous system swapped them in my brain. I am only thinking this because I heard it happens with war vets, and my surgery was on my left but I am having significant relief on the my right. Strange.

The relief starts slow and deep. I was naive to the chance that my pain could be way worse than I thought. It’s like it is healing from the core.

Jeez, somebody got to write a good book about this stuff.

I am happy to see others being helped on my topic.

Jimmy

Edit for Thursday, April 11

Hey guys. Wow.

My surgeon, doctor Schindler at Oregon Health and Science University, and I are starting to piece together what has been happening to me.

I guess the new title is “Eagle Syndrome with Vascular Compression of the Carotid Artery and Cervical Rotation.”

Left side done. Day by day I feel better and better. Mentally, physically, emotionally. It’s like the sun coming up after many years. I think Eagle may have been giving me symptoms for about six years. I only could communicate myself at year three.

It’s a lot for me to handle. I’m supposed to be doing my calculus homework :sweat_smile:

To anybody considering surgery, FIND A GOOD SURGEON. They are out there. If you are sure you have it, don’t be shy. Go get help. Living like this is hell and you might be so screwed up that you don’t even notice how bad it is. The fighter mentality can be blinding.

Thank you all for helping me get through my first surgery. You guys are great.

Jimmy

Edit for Tuesday, May 7

Second round of surgery was success!

Lots more pain this time for some reason. I came out of OR with an agonizing, stabbing pain in the back of my throat. Never felt something so bad.

Doctors quickly got me on Fentanyl, more Percocet, and some other crazy stuff. I felt a lot better about three hours later. Not fun. I was discharged and I am feeling okay now. I am already feeling some relief although it’s heavily overshadowed by the acute pain from the excision.

Last couple weeks have been so transformative. I’m completely sober (or at least I was before today). I’m much happier and I can think clearer with more blood flow and less pain.

Life is good. I’m going to be in bed for a couple more days but that’s okay.

I’ve been speaking with Margret privately. She is about two and half weeks out from surgery and she is awaiting more significant relief. Send some prayers or good thoughts her way.

I’ll check in a couple weeks.

Jimmy

1 Like
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It’s different for everyone; some members have found symptoms are improved as soon as they come round, others have found it can take even up to a year! Vascular symptoms can go quite quickly, but when nerves are involved & have been potentially damaged by the styloids, that can take quite a while for them to recover.
You’ll still be swollen on day 3, that won’t go down for a few more days yet, so keep semi-upright as much as you can, & ice your neck if that’s tolerable. Also whether you’ve had intra-oral or external surgery can make a difference too?
Sewmomma has posted lots about her post surgery experience, you can search for that & others’ experiences, it might help you to know that others have found it takes longer to feel good!
Plus if you’ve had symptoms both sides, then you’ll still be in pain from the remaining side, so that can mask any improvements sometimes.
Unfortunately patience is needed! It could take a while yet, but you’re young, so should heal quicker than some of us ‘oldies’!
But well done to you for advocating for yourself! Many members find it really hard to get taken seriously, & being fobbed off saps energy, for you to do that at your age is brilliant! Be very proud, & I’m sure that your determination will help you get through the disappointment of not feeling better straight away. Best wishes!

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Thanks for the response.

That is reassuring. I was kinda hoping for a euphoric “pain-relief” moment but maybe that was a fantasy in my head. I am excited nonetheless.

I’m damn good at waiting though, so thanks for the advice.

I am interested in hearing more.

Jimmy

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Hi Jimmy!

We’re glad you found us! We would all absolutely love to hear about your journey. How did your ES present? Calcified ligaments or elongated styloids (or both!)? What were your main symptoms that bothered you the most? Chronic pain in that area?

My advice about surgery would be - don’t take any thought too seriously and don’t over analyze before 2 weeks. There is SO much swelling and tenderness after surgery - I couldn’t tell what was what in that area!!! Everything hurt. I remember on about day 4 when I took a shower, I had my husband lightly blot my site with a soapy rag and I kept saying, “Ouch, that’s too hard” and he was barely touching me! Allll normal. It’s been 2 months now and I forget I’ve had surgery based on how that area feels when I touch it now.

How are you eating? Do you mind if I ask if your past demons have been affecting you taking your pain meds right now? You do need them - that is what they are there for. But your life sounds complicated. I do think this is the beginning of the right path for you though. You’re on your way to better days!!!

I’m hoping you’re on spring break this week? Do you have lots of music coming through those ear buds? That hopefully will help the time pass.

Write us when you can. And welcome to the group! :musical_note:

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Wow. You guys are sure nice on here.

SewMomma,

I’ve just posted more about my story.

Thanks for being interested. Jules recommended that I take a look at your story too.

I have both elongated styloids and ossification of the ligaments.

My biggest symptoms have been dull stabbing pain in my upper neck and aching jaw pains.

I’ve been on some pretty heavy drugs. It would probably be a good idea to get off some medication before making means about my relief after surgery. I am definitely fighting some demons right now.

I am eating just fine. Lotta soreness in my throat.

I love listening to music though, it helps me cope.

Thank you for your kindness, SewMomma.

Jimmy

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The sore throat should go away very soon - a couple more days at most.

Very wise to not over-analyze right now. Take it easy and do not over-do it. Setbacks are no fun! In other words, no dancing to that music :joy:

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I’ve been in pain for 5 plus years and finally get surgery in the next couple weeks. I’m nervous how painful is surgery?

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My surgery experience was great.

I was knocked out for five hours - a little longer than expected - and I awoke in a hospital bed.

A few hours later, I was out of the hospital. It was late in the evening and the hospital was shutting down the wing we were in.

My neck and jaw were stiff and sore. It is a mild level of pain. You can walk without trouble and you might have some strange sensations throughout your neck, but the pain should be easily manageable.

The scary thing about my surgery was dealing with the prescription drugs.
I am four days post operation and I’m just starting to wake up from the Oxycodone fuzz. Ugh. I hate the drugs.

I’m still sore now, but I have less stiffness. I am hoping for some relief soon.

Don’t worry about your surgery. Best of luck to you, Margret.

Jimmy

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Great perspective and advice. Five hours is a long time! Your surgeon had his work cut out for him. Mine was a one hour resection.

By the way did you get any pictures of what he took out? We love bloody ligament photos here. Lol :smile:

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Hi Margret,
Every person is a bit different in how they respond to surgery & whether you have surgery intraoral or external surgery will make a difference as well. Intraoral surgery doesn’t allow for complete removal of the styloid process & s-h ligament if it’s calcified so is a less invasive surgery but often doesn’t have results that last as long as those achieved by external surgery. The intraoral route also often includes a tonsillectomy for those who still have their tonsils as the tonsils often block the part of the throat that is incised to shorten the styloid process.

ES surgery is major surgery regardless of what form it takes. It will take you a week to two weeks to start noticing significant relief from swelling & pain, & from several months to a year for nerves to heal. Jules mentioned that in her post above. If you have bilateral ES, then you will likely still feel symptomatic after your first surgery as your neck/nerves/vascular tissues won’t be free of irritation until the final styloid or calcified ligament is removed.

Have confidence in your surgeon & do not worry about the after pain of surgery. Your body was designed to heal. Pain & swelling are part of your body’s way of protecting what’s injured. Being relieved of the culprit causing your ES will amazing, & as SewMomma noted above, the pain from surgery will quickly become a distant memory.

I’m glad to hear your surgery is soon so your recovery can begin!

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I think alot of us go through enough pain with ES that we have pretty high pain thresholds! As Isaiah says it does vary depending on the surgical technique, mine was done from behind the ear & wasn’t painful at all, but regardless if you take the pain medication you’re given at regular intervals it should keep it under control. Eating can be pretty uncomfortable, so be prepared to have smoothies & soft foods! Hope your surgery goes well!

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Thank you so much. I will keep you in my prayers.

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Thanks. I’ve got to eat soft food now. I think you’re right the pain is so bad I’m about to preform my own surgery :joy:. Thanks for the well wishes. This is a great sight.

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I will add you to my prayers, too, Margret!

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I have a question about how long you need to be off prednisone and other pain meds befor surgery? I’m waiting for surgery and don’t want them to say we have to wait a week. I need it now. :pray:t2:

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I had to discontinue ibuprofen 2 weeks prior to surgery for blood-thinning risks. I could stay on Tylenol PM and an antidepressant.

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Margret -

I’m surprised your surgeon didn’t give you the info about how far ahead to stop meds. As SewMomma said, it’s usually 10 days to 2 weeks, so I’d call the doctor’s ofc & ask specifically what you can & cannot take in the couple of weeks prior to surgery. I know your surgery is soon so you should do this today if possible.

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If you take any supplements be careful. Do not take anything for 2 weeks that would be an anti-inflammatory or blood thinner. The nurse went over my extensive supplement list line by line.

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Thanks everyone :smiling_face_with_three_hearts:

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Hello Jimmyeagle, My name is Hadassa and I want to encourage you and let you know that I suffered with ED for 17 yrs. It was hell on earth…I finally got diagnosed after 17 years and a week later, I had both sides done through my mouth.

It was such a hard surgery and I just wanted to die but, I got through it. I too had lot’s of pain and I thought I had made a mistake by having the surgery…You will have pain for about a month, if I remember correctly. With everything that passes through your mouth/throat, you will get a little crazy because it is so raw inside your throat.

You will get through it…I think I felt better about 4-5 months after the surgery. I also lost about 40 lbs. because of fear of eating and injuring my throat. It’s a process…I no longer have the pain, or sensation under my tongue. I recently saw the physician who diagnosed me and I asked him to continue to work with ES patients. I told him I had his name on our physicians list. He said he would stay on the list if I would like him to stay.

I hope you do get your relief soon. It took me months. Hang in there. My life changed for the better.

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