what insurance do you have now?

How is your tinnitus now?

Two years ago I was at UNC for my 8:30 appointment with the CK machine.  The only thing that went wrong that day was it did not happen until 10:00 (typical of all appoints at UNC). I was home by noon and BBQing that evening.  I took no medications and only had one dizzy spell that afternoon.  I felt well enough the next day to drive 2.5 hours to Charlotte to pick up a wedding gift for my son.  I might have been a little off as my wife talked me into shoe shopping at the big mall there after we picked up the gift.  So after a 4 hour walk I drove home.  No issues. I walked 18 holes of golf the two days later and the only real issue was the first swing.   I sent people running but by the end of the first hole I felt fine.

I waited 8 months for my first follow up MRI and the tumor shrank a little. My next one is not until January 2026 and I am hoping for the best. 

Other then the hearing loss and tinnitus which were both present before the procedure I have had no other side effects, even brief ones.  I share this as I want to thank the community who helped me get to and through the procedure,  Also to let people know there are great outcomes.  We hear too much about the negative.  As I tell people with 1 being worse and 10 best I scored a solid 10 with the procedure.

Thank you all,
Dan

That's a whole lot to read to just find out that there is no connection.

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.