Thank you for posting this. My mother has had facial pain for 18 years (burning and stabbing). I am going to try to get her in for an appt with my ENT to see if she has ES like I do.
That sounds like a really good idea, beachlady! After my father died, I started thinking about some of the strange health issues he had going on near the end of his life, especially regarding his heart. It struck me that perhaps he had ES w/ vascular compression. He went through all kinds of heart testing that never really provided an explanation for his light-headedness, dizziness, & heart palpitations. I was so sorry it didn’t occur to me after dealing w/ my own ES challenges to suggest he get checked, too.
I am very sorry to hear about your father. It always surprises me that many doctors don’t know what to try or who to reach out to when they can’t figure out what’s wrong with a patient. For example my ears itched for 10 years. During the 10 years, I went to my GP and two ENTs and none of them could figure it out. I then started going to a new GP who recommended an ENT he liked and the new ENT diagnosed me in two minutes as having psoriasis in my ears and gave me ear drops to use. After suffering for 10 years, the itching was gone in week. This same ENT diagnosed my ES. I wish more doctors would think outside the box like mine does.
It does make a huge difference to find a doctor who isn’t stuck assuming certain symptoms mean the same thing for every patient. It’s an easy mindset to fall into, I think. I’m glad you found a gem of an ENT after all your years of suffering!
The same thing happened to me. It took five years and many doctors before I got diagnosed. ES is a very rare disease and surprisingly not many doctors even know about it.
Even my ENT said it might be throat neuropathy when I first saw him about my sore throat. My GI doctor said it was LPR. This had me completely confused for a year until the CT scan results that my ENT ordered came back. So I agree that it seems like ES is rarely considered. It’s a shame.
Sounds familiar, I heard strep (even with negative test), tonsillitis, some unknown virus, acid reflux, throat nerves acting up, globus sensation, anxiety…and that is where we left it, until I started googling and found this site and got copies of my CT and saw it for myself.
We have to keep searching for answers because they are out there - no matter how rare.
Yes I agree. We have to advocate for ourselves.