Chiari Online Support Group

Good news = no tumor; now what do I hope for?

I noticed some hearing loss in my left ear 5 or 6 years ago. ENT originally thought it was otosclerosis and recommended no action until it started really bothering me. Last month, I’d finally had enough of turning my head to hear my students, so I went back to the ENT. This time, he wanted me to be seen by his own audiologists. Their tests showed some abnormal results, so I was sent for an MRI looking for an auditory tumor. Results showed no tumor, but a 15 mm Chiari malformation. My primary care physician referred me to a neurosurgeon, and I was told, “If it’s 0-5 mm, we do nothing; 5-10 we monitor; over 10 is surgery. Yours is 15 mm…when would you like to do the surgery?” I’d already read enough to know there’s more to it than size, so I have sent all of my tests to the Mayfield Chiari Center in Cincinnati and am waiting for their call. I am having symptoms, but I would not classify them as severe. I don’t want to have decompression surgery unless it’s absolutely necessary because I’ve read so many stories of people who are worse after the surgery. But I also don’t want it to progress to where I DO have severe symptoms, since that’s when it seems there is less chance of success. Not sure what to hope for at this point.

1 Like

I don’t think that my neurologist or neurosurgeon would agree with a guideline to do surgery based on measurements. The folks I talk to seem to base that decision on the severity of your symptoms, particularly if there are neurological impairments (numbness, weakness and motor coordination, but not so much headaches or dizziness). I’ve also read that symptoms are not necessarily progressive. They can get worse, but they can also stay the same or even get better over time. I’d get a second opinion!