Be Smart

Hi, I am 50 yrs old and was diagnosed with an acoustic schwannoma (neuroma) when I was 17 after being hit by a car and getting a basal skull fracture. The CT picked up an egg size mass. I rarely had ringing, no balance problems and could only appreciate a difference in my hearing when I passed the phone receiver from one ear to the next. Maybe it was because this happened in the late 70's where in the ancient times you were rushed off to surgery? What I can share with you is that after two very long surgeries (17 hours on day one and 10 hours on second day, one week later) the tumor was gone and so was my hearing, my balance and my smile. My tennis prodigy days were gone and even now I will fall over if I look up. Walking at night is nearly impossible. Your balance depends on input from both ears and if that is lacking then you use the input from the bottoms of your feet and your eye sight. Plan on serious balance problems at night or on rough irregular surfaces. Several years later I learned I had CMT Charcot Marie Tooth Disease and NOW firmly believe I never had an acoustic neuroma at all, but instead had a classical CMT "onion bulb" myelin sheath tuberous enlargement and never needed surgery at all!!! First get smart, have the neurologist test you for all forms of CMT and related disorders that might cause cranial nerve myelin growth enlargement. Charcot Marie Tooth disease is very common and so are the related tuberous "onion bulb" nerve growths. I would urge you to ask questions, educate yourself and do not rush off to surgery for minimal symptoms. If you have impending brain herniation, severe hypertension, seizures or other life threatening affects from an intracranial mass dont be stupid get the neuroma removed ASAP. Best of Luck to each of you.
An Ep User An EP User
1 Response Jan 31, 2013

I thought I was the only person in the world with both a vestibular Schwannoma (2.5cm) and CMT, I'm male and 48. Do you also suffer from restless leg syndrome?