Hi @Luci,
Sorry to hear about the experience your husband has with being diagnosed with ES. Since the symptoms can be changing before they can become constant enough to be able to verbalize them, the Drs easily lose patience. The statistics based on some researchers indicate that there are not enough specialists in the ENT world that can understand a patient or diagnose them properly.
I had my surgery done on April 20 by Dr Samji and I am recovering really well. He ended up being in my county so I was able to get diagnosed in 4 months. However I went through hell before I was referred to an ENT office, so I can relate. You can look at my journey here.
ES Journey
Each one of us has started our Journey by deciding on an experienced Dr, who can provide the right guidance. Use this reference of Drs by State that have demonstrated knowledge or experience in working with ES patients: US Doctors - ES experience.
It is also very important where this Dr performs their surgeries. In the era of COVID - 19, hospitals are hot zones for infections. Surgical centers are less likely to have high infection rate, because checks are made for everyone that enter the facility. I mean everyone on staff including patients.
My surgical experience is also detailed i this post.
ES Surgery
I first tried the non surgical option which was recommended by Dr Samji. This method entailed taking Gabapentin. I wrote about my experience in this post, which I hope it can help you in the process of talking to a local ENT to start the process prior to scheduling your husband’s surgery.
Gabapentin effects and side effects
If you need any assistance locally in California, I am available to help. Just let me know in a private message and I’l share my contact information with you.
Cheers,
Riki