Waiting months for a specialist ENT appointment after an acoustic neuroma diagnosis can be very frustrating, but it's a common experience, especially in major centers like Massachusetts where demand is high and neurosurgical/ENT teams handling skull base tumors have limited availability. Many in patient forums share stories of long wait times for initial consults, particularly at renowned institutions.

In the meantime, it’s helpful to gather records and keep a journal of symptoms, as some people found it aided later consults and helped track changes. Many patients have reported similar symptoms: vertigo spells, tinnitus, ear fullness, headaches, and even jaw numbness can all stem from the tumor itself or related nerve irritation. Often, specialists recommend further tests to monitor hearing and tumor growth, as “wait and scan” is a safe protocol for small tumors, allowing for more informed treatment choices later if needed.

Some patients recommend joining online support groups or organizations such as Acoustic Neuroma Association (ANA), where you’ll find community members who share timelines, advice on picking doctors, and updates on new appointment openings. For a growing number, a second opinion or exploring providers in other regions sometimes leads to an earlier consult. Keep reaching out to different clinics, and if symptoms progress, let your referring physician know—they can sometimes help expedite or flag urgent cases for earlier slots.

Sharing symptoms with your provider and noting any changes between now and the appointment will be valuable. You’re not alone in this, and many have found connecting with others facing similar experiences both reassuring and practical for navigating their care journey.

Excellent news! Watch and wait appears to make a lot of sense for you.

Ellen

Hi it comes and goes - and it mainly occurs during the night (I guess blood flow/pressure). However most days I will get the odd twinge in ear, behind eye, deep in head, in neck...all that side. MRI every year shows no change and there appears to be no reason (I have had the trigeminal and facial nerve looked at when I get the MRI and no signs of impingement). It feels like a stabbing pain.

Hi, glad you decided to stop by again. It’s always good to see familiar names resurface, even if it’s just for a quick check-in. I know exactly what you mean about remembering people by their usernames and stories more than their real names — so many helped me too in ways they probably don’t even realize.

The FB groups have definitely gotten more active, but I still find value in this forum, especially because the old posts are like a living archive of everyone’s journeys. I hope you’re doing well since your 2017 diagnosis — it’s encouraging to see people come back years later and still be connected.