Hello all! I cannot believe it- discovering this page and learning about ES has answered so many questions and fears that I have been fighting for the past decade of my life!! If it weren’t for me feeling around in odd spots around my tonsils this week, I would have never discovered my styloid trying to poke through and then a quick search for bones in the tonsils led me to discover this page and ES. I had never come across it with all of my research before- and I’m so relieved.
For the past 10 years I have thought I had some sort of slow-growing cancer. I have dealt with vision changes (being out in the sun for a few minutes adds a weird water surface texture over everything), constant muscle twitching down the sides of my abdomen and most areas that have lymph nodes, pain in the head/neck/back, feeling as though my circulation system is being constricted, tightness/fullness in my neck and head, constant ringing in ears, random areas on my back/face/neck that tingle, buzz, and have numbness, fast heart rate for the first 5 years, palpitations… ugh, the list goes on and on. I’ve felt lots of nodules (which doctors say feel like normal lymph nodes, but I feel ALL of them and they feel swollen to me), especially in my head/neck/collarbone areas, they used to painfully twitch and have sharp shooting electrical pulses, too.
Sadly, I had given up on trying to explain myself and find help. Doctors wrote me off and said everything was normal. I knew it wasn’t but what can you do? I finally broke down this year and bought a package of CT scans from a full body scan place out of good measure. They found a 3cm nodule on my thyroid and I thought maybe that was my problem and hoped it wasn’t a thyroid cancer that had spread. Well thankfully, the biopsy came back 2 weeks ago and it was negative.
Figured my body just hated the nodule and I was doomed to have these symptoms forever I guess. Until this week, when I felt down all around my tonsils where i normally don’t. The ringing in my ears has been getting worse, as well as neck pain especially when my head turns. Low and behold, there felt like a crayon sticking out from my lower tonsil area on the side that’s the worst for me. The other side was much smaller, but still palpable. I couldn’t believe it! Had no clue about styloid elongation and now I KNOW this is it!! I’m excited and nervous but happy all at the same time. Finally an answer… and maybe hope for relief?
I called my doctor, got a referral to a local ENT place in Tulsa. I can travel, and am thinking Dr. Hepworth would be a short flight for me and takes my insurance. Can I get some feedback on the next steps I should take to get this ball rolling as efficiently as possible?
I’m assuming this ENT will want imaging. Should I ask for anything in particular? I’m thinking CT with contrast, correct? Should I try to skip the imaging and just get the diagnosis from the palpable styloid and then just get a referral to Hepworth? My insurance is a PPO and doesn’t require referrals- can I just go straight to Hepworth and just have him do the imaging he needs?
I basically don’t want to have to repeat testing if I am going to end up going somwhere else anyway or if they don’t get the right thing in the first place. I have kids with brain abnormalities so I’m used to dealing with doctors and specialists and getting referrals. Just trying to cut down on a lot of the middleman stuff.
Any help or suggestions is appreciated!