Hi Rickstarbird!
Welcome to this amazing forum. I’m so glad you’ve joined us & YES! Your questions will get answered & you will find kindred spirits here. We do have some members who suffered w/ ES symptoms for 15-20 years before getting diagnosed so I’m glad you got your diagnosis early. It’s pretty remarkable that you’ve been able to “dismiss” your symptoms for so many years & great that you’ve found ways to help reduce them on your own. It does sound like you’ve finally hit a point of “symptoms critical mass” where you need to consider moving forward w/ treatment.
We recently had another member join from your state, & unfortunately, we don’t have any doctors on our list from there. The nearest doctor I can recommend is Dr. Annino in Boston. If your ENT refers you to someone who is familiar w/ ES in your area, we would love to have a name to add for your state.
On our home page, there is a category called Patient Self Advocacy. I highly recommend you read the info there before jumping into what sometimes becomes a tangle of doctors & differing opinions as it may help you avoid some of the pitfalls of getting “kicked around”.
https://forum.livingwitheagle.org/c/patient-self-advocacy/how-to-self-advocate-and-be-heard/35
Info that’s good to know: The type of doctor that usually treats ES is a skull-based ENT surgeon, head & neck surgeon, neurosurgeon or maxillofacial surgeon. These doctors are often cancer specialists. Understanding the type & thoroughness of a doctor’s surgical approach is important. We recommend the external (vs. intraoral) approach as access to the styloids & stylohyoid ligaments is better, & the styloid can be removed back to the skull base, & the stylohyoid ligaments, if calcified, can be removed as well. This provides the best long-term recovery from ES symptoms. Nerves & vascular tissues can also be better monitored & seen via the external approach. I’m including the link for ES doctors at the bottom of this email. It’s important to see a doctor/surgeon who is experienced with ES in order to get the best possible care. Not all ENTs are familiar with ES & only a few who are familiar with it, actually do the necessary surgery to help correct the symptoms.
Here are links to some good posts about ES symptoms & their causes that will also be helpful to you - ES Information: Common Symptoms And Possible Explanations For Them
You can search any topic or doctor by using the magnifying glass icon above right & typing in the word(s) that describe what you’re looking for.
We’re here for you all along your ES journey!