Jimmy's Story - 17 Year Old from Oregon (Vascular ES and Cervical Rotation)

General
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Hello. My name is Jimmy.

I am a seventeen year-old from Oregon. I have been in chronic pain for three years.

I was encouraged to share more regarding my story. The community on here is very kind.

I will begin with my current situation.

I am four days post-operation for a left styloidectomy. I’ve had terrible experiences with drug abuse in the past, so these last couple days have been hard on me. Doctor prescribed me with percocets and Tylenol for the pain. Sadly, I’ve been also dependant to marijuana for the last couple months.

I am coming out of hell. I am tired of being a slave to my pain. I plan to be sober soon.

Now let’s go back to the start.

Back in September of 2016, I was a freshman in high school. I was only fifteen. I began to develop some strange symptoms.

  • Jaw Pain, Neck Pain, Upper Body Discomfort
  • Ringing in the ears, limbs falling asleep often, bad blood flow
  • Jaw clicking/locking, neck cracking, fatigue, on and off headaches

There are probably more symptoms I have yet to list. I also had a pretty bad sinus infection my whole freshman year of high-school.

Long story, short - I am in a lucky situation. I had the ability to see many doctors.

I had seen around forty doctors and I’d done nearly every treatment.

I was misdiagnosed with depression, anxiety, fibromyalgia, amplified pain syndrome, complex regional pain syndrome, TMJ disorders, functional scoliosis. The list goes on and on. Pardon my language, but that was all bullshit. I knew that something was structurally wrong with my neck and jaw.

Try to convince a seventeen year-old that he is crazy… It’s pretty hard to do.

I devoured the internet for information. I worked for months and months. I cracked MRI reading software off the internet. I learned everything I could about my neck despite being told that I was just “depressed.”

Turns out, I had bilateral ossification of my stylohyoid ligaments AND elongated styloids. This wasn’t a big surprise to me. We found Dr. Schindler at OHSU after seeing many doctors with many other opinions on Eagle.

I am sorry I am scattered, but this is important to me. I would like to write more when I am sober.

I will be back to update everyone. Hopefully I will be more sober and in less pain.

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

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Thank you for sharing your story. I hope you recover fwell from surgery and start feeling better soon. I have been suffering from this evil condition for 11 years now and I just can’t take much more of this pain. I have not yet had surgery as I was put off going down that route by the first ENT I saw. The second ENT had me in tears and I felt let me punching him out of frustration. After trying various medications to help with this condition, I gave up for as I thought that there was no hope for me. Just recently i have been referred to see the most experienced man to help me with this condition. So fingers crossed he can help.

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Hi Jimmy!!!

I can’t decide if you were a fighter before Eagle syndrome or if it made you tough. I’m pretty sure you’ve always been a strong kid :+1::slightly_smiling_face:

So you had a pretty obvious case of ES when looking at your scan I bet! Well, obvious to the person who knows about Eagle syndrome!!! There are so many (doctors!) that don’t know about it! It sounds like you’ve been through SO much. Much of what you’ve gotten into (substance-wise) was probably to help deal with the pain you were experiencing. Now you are on your way out of all that!

Focus on the positive and remind yourself of all the good in your life:

  • you did what tons of us on here take years and years (decades!) to do - get a diagnosis and have surgery!!!

  • you mentioned you can see a variety of doctors - also a blessing since alot of members are limited by their insurance plans

  • Lastly, and I think most importantly: you are incredibly self-aware! This is a trait that many, many adults are lacking! You know your weaknesses and hurdles in your life and you have determination to overcome them!!!

I think great things are in store for you. Not only healing from this procedure (and the next I presume?) but also sharing your story of substance dependence and recovery with others. The expression “one day at a time” is not a cliche. It’s a billion-dollar saying that gets us through these times!

Keep listening to music, keep eating/drinking water and check in with us often.

We’ll be watching the Ducks play basketball on tv later here at my house! Peace be with you!!!

PS - I edit my posts lots too, lol. I hope/pray nothing I ever say is a burden to anyone!

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Angel,

I am so sorry you’ve been suffering for this long. You must be one brave person.

Do not give up. There are things that will help.

Sometimes we must fight to see the RIGHT doctor for the job. Keep looking. You want somebody who you can trust.

Where are you located and who will you be seeing?

Good luck.

Jimmy

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Hi SewMomma!

Thanks for replying!
Your words are very kind.

I’ve always been a fighter - you got that right.

I thought my case was pretty obvious when I found two knives digging down into my neck. I guess others thought differently.

You are so, so right. I need to focus on the positives.

I hope I will think clearer when I emerge from this mess.

GO DUCKS!

Jimmy

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You most certainly will think more clearly in the near future. In fact - let this be your motto “I will be seeing things more clearly in 2020”. Get it - 20/20 vision? That could stick! I’m envisioning a t-shirt/bumper sticker with this on it. We can split the earnings. :rofl:

Not that you won’t feel better long before then but considering the second side and healing - that is what I’m telling myself personally to be realistic about a January 2019 surgery and a May 2019 surgery (my plan anyway). I’m going to let the whole year wash in terms of expectations.

We’re here for you! Your story is an inspiration to others.

Be well.

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Hi Jimmy!
I’ve read all your posts tonight & must say I’m incredibly impressed by your eloquence considering your mental condition (drugged :crazy_face:). I’ve been there. I know how Percocet, Tramadol, Vicodin, marijuana…mess w/ our brains. I sure couldn’t have written a post the caliber of any of yours with any of those in my system.

I second everything SewMomma, Jules & the others have said & am fascinated by your story & in awe of your maturity, resilience & resourcefulness at such a young age. You will go far in life if you continue to cultivate those characteristics.

I’m so glad you found this forum but even more glad that you pursued help until it was given. I’m guessing that you had external surgery as calcified ligaments are not readily removed by the intra-oral route. Am I right? You’ve gotten some good advice about patience & healing timelines. The most important thing to do in the first week is adhere to the pain meds schedule, keep your head elevated especially when sleeping & ice 3-4x/day 15 min. on & 45 min. off if you can tolerate it. Days 3-5 are when the post op swelling is the worst, & cutting back on meds too soon can set back recovery a bit.

I’m sure w/ your determination you’ll be able to “sober up” pretty quickly once your ES surgeries are behind you. I am very sorry for what you’ve been through & that you even have to detox from drugs going forward. It’s a tough road to travel.

I’m a post “editor” as well. Just love that little pencil icon. My posts would be a mess if not for that!

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I am located in the UK and have to travel for 3 hours to see Mr Axon in Cambridge. I had really bar migraines the past few days and vomiting. I am losing weight and now size 10 jeans don’t fit me as they are now too big. My appointment is not til 31st May :(.

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xAngelx35,

I’m sorry to read that you’ve been so sick. Hopefully those migraines will subside & give you a break. Try holding your head in different positions to see if you can find one that isn’t too awkward that helps relieve the pain/pressure your feel in your head. Obviously try to avoid the position(s) that seem to make the problem worse. Sometimes this makes a big difference for people suffering as you are.

May 31st will be here before you know it!

:hugs:

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Symptoms do come & go for no apparent reason; I hope that these migraines go very soon for you, & that time flies by before your appt. Big hugs to you…

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I am having a bit of a meltdown & freaking out a bit right now :frowning:. I was on Facebook looking at a few groups about Eagles Syndrome and a few times now assisted suicide has been mentioned :sob:. Am I doing the right thing in seeing Mr Axon in Cambridge? I guess I just need a bit of reassurance that he is good at what he does and I’ll be ok under his care.

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You are seeing the doctor we consider the most experienced ES surgeon in Great Britain. He’s done many surgeries which have had high success rates in treating ES symptoms. You WILL be in good hands!!!

Stay away from any site that offers depressing information like you’ve been reading. People who post such things have either given up too early in their quest for treatment or may have other untreated problems that have brought them to the ends of their ropes. There are tons of testimonials on this forum regarding good to excellent surgical outcomes. Focus on those & imagine that for yourself.

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Having had surgery with Mr Axon, I can assure you that you’re doing the right thing! I feel so much better after my surgery! Search for success stories on here, & as Isaiah says steer away from those other influences- that sounds unbelievable when there is help available. I know it is hard to get diagnosed & to get treatment, but it is possible, & the fact that you’ve got a referral to a very experienced surgeon should be a very positive thing for you! Best wishes, & feel free to bring any anxieties here.