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.
Edit for Saturday, March 30:
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.
Edit for Wednesday, April 3th
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.
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
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.
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.