Extreme vertigo, balance and contiuned speech problems & reconstructive surgery

[Greg_G]

Hi everyone,

I had my AN tumor removed over five years ago and still have a shunt to drain fluid. When I'm tired, my speech gets very slurred, and on occasion, my balance is affected, especially when waking. I've read that speech and physical therapy might be needed again years later. Does anyone have tips for getting insurance to cover this? After my surgery, the right side of my face is no longer symmetrical. Has anyone undergone reconstructive surgery for this?  What was your experience, and did your insurance cover any of it? I live in the Midwest and am curious about potential out-of-pocket costs and recommendations for surgeons in the St. Louis area. I'm also looking for a new job, and these issues are affecting my self-confidence. I suspect some employers might discriminate based on my speech. People who know my situation have even asked if I've been drinking. It's very frustrating. Any advice would be helpful. Thanks!

[donjehle]

Hi Greg_G, and thank you for posting on the ANA Forums!

What you are going through is very challenging.  I am very fortunate that my insurance covered my vestibular therapy treatment.  I was told early on not to simply seek physical therapy because most physical therapists are not trained in vestibular schwannomas, but it was better to seek someone who has experience dealing with those with acoustic neuromas.  My balance improved greatly after receiving such treatment.  But, again, my insurance covered it, and yours might not.

I can see how your confidence would be shaken during a job interview.  I, too, was asked if I had been drinking when I staggered down the hallway like someone who was drunk.  It is very embarrassing at times.  I found that I had to explain my condition over and over again.  And I also had to tell others that many people with acoustic neuromas are able to overcome the challenges and live very productive lives.  And sometimes I would give them printouts to assure them that things would be okay.

I wish you well in your journey!  Please keep us posted in how it goes.
Don

[Greg_G]

Hi Don,

Thank you so much for your thoughtful reply and for sharing your experience. Your advice about seeking a specialist in vestibular therapy is incredibly helpful, and I appreciate the encouragement regarding job interviews. It's reassuring to hear from someone who understands these challenges firsthand. Thanks again for the support and insights! I'll keep the forum updated on my progress.

Best,
Greg_G