New here, my story

Hi! First I want to thank you all for all the great info leading me to finally find out what is wrong with me. It has been a nightmare, no doctor could find out what was wrong with me.
It started a year ago with symptoms on my right side. Neckpain. Numbness from ear, along the jaw, cheek and around my eye. My eye felt dry and tender. Mucus and lots of swallowing. Doctor said sinusitis and gave antibiotics, did not work. I started having trouble relax when lying down, right side of head felt “tight”, weird and numb. My head felt like I had brainfog, could not concentrate. I started feeling anxious and stressed, could not fall asleep. I felt my puls in my head and sometimes It felt like my neck/head vibrated. Had to start taking sleeping pills to sleep.
I lost lots og kilos and started fo feel real sick. Started having two tender teeth, burning sensation in half my toung and tonsil, swollen lymphs. All only on right side. Doctor did bloodtest, sent me to MR, CT, ultrasound. Everything was fine. I was told I was stressed and needed to relax . Went to see chiropractor, psychologist, physiotherapist, private doctors in all genders. Nobody found anything. I told everyone that i felt there is something in my throat, and something is swollen in my neck under my ear. You are stressed they told me.
Than I started having pain in right shoulder and arm, and sometimes I also felt my legs had a weir feeling. I was absolutely sure there was something wrong, not just in my head.
I searched the internet and came across this site after a person randomly asked me if I had heard about ES. This was in november. I told my chiropractor who said he had heard of it but never had a patient with it. He sent me to dentist who took a x-ray. Found nothing.
After almost giving up, I one day felt a hard lump newt to my tonsil. Finally proof!
I told my doctor, who finally believed me, we need to take CT 3d. They took new CT, found nothing. I told them to measure my styloid length, they did not know how to do it…My husband and I had to educate the radiologist how to diagnose this, based on info from this forum!
Finally they got it measured. Right side aprox 3,8 cm and left 3,6. Only have symptoms on right side, it is the one i feel in my throat.
I will be in surgery january 9, looking forward to it. It is in Norway where I live, I have found one surgeon who has done the surgery many times.

Good luck on your surgery. We have all been where you are and it’s rough that more doctors don’t know about this. Your SP looks thick like my left one was before I had it removed. My right one is longer and thinner and is less symptomatic though since I’ve had my left removed I’ve noticed more symptoms on the right. May God bless you in your surgery and recovery. Are they doing it intra or extra orally?

The surgon, due to my big helth problems, quickly booked surgury and I am waiting for more info after christmas.
Thank you for your support!

I only asked because once I finally got diagnosed I had the surgery intraorally but the doctor was not able to do more than clip off the tip of the SP due to it being in contact with the facial nerve. This provided me with no relief. 3 years later I finally found a doctor through this site with experience and he removed it from outside and had better access and was able to remove the whole SP and the styloid ligament. Eventually I will probably have the other side done. I know what it’s like to be desperate for relief but I wish I had done more research before I had my 1st surgery. God bless and don’t be afraid to ask questions.


This was mine before the surgery.

I realy hope he will remove it from the outside, I will not accept just shaving og cutting just the tip.
Thanks to all the info here, I am well prepared for my appointnant before my surgery :slight_smile:

I’m so glad you found this site & that you’re heading into your surgery well informed & especially that you’ve gained so much insight from this forum. It’s also good that you’ll be able to talk about the surgery in greater detail w/ the surgeon before your surgical date. Hopefully his experience is in external SP & ligament removal.

Your styloid does look very thick so I imagine a number of your symptoms will go away once it’s removed. Remember that it can take some months for nerves to recover so some symptoms may linger for a bit after surgery. Also, post op, the remaining styloid often becomes more symptomatic.

Hoping & praying the best for you as you move forward with your ES treatment.

Glad that you have surgery organised! There’s lots of info about surgery in the Newbies Guide section- as the others have said don’t be afraid to ask questions and make sure that the surgeon will remove enough of the styloid process. And as Isaiah says, recovery can take a while so prepare yourself for that! Hopefully all will go well, & feel free to ask any surgery questions!