A new lead

Yesterday was my auditory processing test at children's hospital. The general agreement? My auditory processing skills are below developmental/age level but it's not because of a neuro-behavioral auditory processing issue, aka auditory processing disorder. Such a result was expected, in fact when we arrived and met with Doctor hamil (Who was appalled at the behavior of Dr Hinchin, the audiologist who was terrible to me and even made such a thing clear in her write up who tested me back in 2015 at BCH and was the reason we saw Dr hamil in Lexington) she had said that we could not actually do an APD test, as there is a confirmed presence of hearing loss. We instead made up the test as we went and did a hybrid of hearing and processing tests. Mass eye and ear believes I have a form of auditory neuropathy, as shown by abnormal neuro ABR, children's has only done threshold ABRs which were disregarded. While testing omissions middle ear omissions were present, which would signify that a neuropathy is not, but due to the fluctuating hearing loss and abnormal ABR it is accepted by both BCH and MEEI that there is a form of Audiotry Neuropathy and/or something similar to it. It was discovered that my pure tone perception is especially where I have trouble and by the end of the test we had moved away from pure tone testing. My speech perception is variable, as expected it is worse in the left ear than the right. The left ear gets worse at a faster rate than the right and currently stands at a mild-moderate for low frequencies though middle frequencies and at a moderate-severe for upper mid frequencies and moderate-severe to severe in high frequencies. The right is in mild to moderate for middle frequencies and mild to moderately severe for upper frequencies, low frequencies are mild. As for why I cannot hear fire alarms that is where we have a new lead as to what is going on with my various symptoms and syndromes, when I had the virus five years ago that destroyed my sense of taste and smell and damaged my vocal cords it left lasting nerve damage or destroyed the nerve endings entirely. Virus's do not go away once recovery is done, they simply become dormant. It is believed that the virus may be attacking the damaged nerves in my ears, auditory nerve, respiratory system, and part of my brain. Genetics and Neurology are working closely with ENT at both BCH and MEEI/MGH and with BCH Rhumatology who specialize in complex disorders sometimes with a genetic or nervous system origin no matter if there is inflammation of the system. We still do not have an answer but we are making progress, Dr Hamil gave the authorization for Doctor Cohen to approve binaural amplification with a Phonak Sky-V or Sky-B in my left ear and the Roger focus in my left, as well as the Roger pen connecting to both. We have a speech evaluation result coming in October and accommodations for standardized testing are on the way. Neuro is going to redo an MRI of my brain and a CT scan while ENT and genetics look at bloodworm with the Rhumatologists. Sure what's going on isn't good by any means, but at least were staring to get somewhere.

Until next time,
Max