My dad had trans labyrinth approach to remove acoustic schwarnoma.  A couple weeks after surgery he had a partial fat graft failure and wound dehiscence.  We got through that and now he has severe orthostatic hypotension one month after surgery. He has to take meds to keep his blood pressure up to be able to stand for 10 minutes at a time and suffers constant dizzines.  Been hospitalized 3x for syncope with loss of consciousness after surgery.  The surgery has ruined his life and he completely regrets it.  Has anyone else suffered orthostatic BP after surgery or graft failure?

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.

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

Ellen