Sending you our story.. In 37 months my husband went from a guy who had a little hearing loss in one ear that was more pronounced than the hearing loss in the other ear, and who also had annoying bothersome tinnitus in that one ear with the worse hearing, to a guy who is completely deaf in one ear, and who still has compromised hearing in the other ear. Here is what happened:
In 2009 my husband was diagnosed with sensorineural hearing loss ( hearing loss in one ear) I see the exact diagnosis on his medical records from the doctor's visit. He also was diagnosed with tinnitus. That doctor, an ENT with decades of experience, never mentioned the possibility of an acoustic neuroma to him, despite the combination diagnosis of sensorineural hearling loss and tinnitus. By the way, when you look up sensorineural hearing loss in wikipedia, there is a mention of acoustic neuroma as being a possible root cause.
http://en.wikipedia.org/wiki/Sensorineural_hearing_loss.
It seems to us now that the otolaryngologist was much more engaged in the diagnosis of sleep apnea and getting a sleep study completed. To repeat, there was no mention of acoustic neuroma. No MRI was ordered.
The tinnitus continued. He experienced a job transition. Our parents were far away and became sick and then two of them died that year. It was a tough year. Our teen son was hit by a truck while on his bike- and we were consumed with helping him get back to being an athlete. My husband was busy with his new job and learned how to cope with the tinnitus. Then, one day in November 2012 my husband realized -with horror- he could no longer hear. We were terrified. His hearing in the other ear was not perfect. We researched. We hoped he would not go completely deaf.
This time my husband selected otolaryngologist, who had a brand new office and who was fresh out of medical school. The new otolaryngologist ordered an MRI. Our insurance pushed back, and got there managed care organization to open a case and study our situation to see if an MRI truly was appropriate. After about 2 weeks the insurance finally agreed to the MRI.
Frankly, I was not smiling. I was going ballistic, making calls to all parties and saying the MRI was needed immediately. I asked the Insurance company to consider it urgent, but they pushed back and said such MRIs are not considered urgent. The Otolaryngologist staff called me and said that it was not urgent and I argued that I saw it as STAT, I saw it as urgent. The staff member patiently said they do not classify MRIs as urgent for this issue. It took 4 weeks to get that MRI and then another week to get the results. And another week for the doctor visit to discuss the results. Meanwhile he was prescribed prednisone for a month, and he was having bad reactions. The results revealed a 1.5 cm acoustic neuroma that had choked off his hearing. He was now deaf in that ear.
Why am I posting this here at this area for watchful waiting? Because in 37 months my husband became completely deaf. He had partial hearing loss - was diagnosed with sensorineural hearing loss. Then 37 months later, he was completely deaf. 37 MONTHS. Was it slow growing? We will never know. It seems to me it was fast growing. All I know is that he is now deaf in that ear.
He wished he could have prevented the hearing loss. He knows it is his fault, because as the tinnitus continued he should have taken action. He should have insisted for more tests. He should not have been passive. He regrets how things transpired. I regret it too. As a spouse I should have been much more pro-active.
Dear readers you are at this site for the watch and waiting status, you are damn lucky. You are aware of the root cause for your medical condition. You are able to do something to make things better. We hope that all of you who are waiting and watching will be fully aware of the risks involved. We hope for very good outcomes for you. We hope you can find a way, if there is a way, to preserve hearing. We hope you can prevent deafness. Please be diligent. If the doctors you have seem to not address your medical conditions, please seek help elsewhere.
We are very pleased to report that he decided on treatment and overcame a mountain of insurance issues. His treatment went very well and it produced no side effects.
It has only been a few weeks since his treatment but so far his outcome has been excellent. He had 28 sessions of Proton Therapy at Massachusetts General Hospital. There were no side effects during treatment, none at all. He was feeling completely well. We think it is important that people who are watching and waiting ought to be aware that very good outcomes are possible. We want to minimize your worries. Please know that now, three weeks later he is bicycling in the hot sun, doing distances that range for 50 to 70+ miles. He is feeling fine. Please take a look at the posts submitted by me (Keep Smiling) at the forum section called radiation for some details. Please know that Proton Therapy seems to be the favorite treatment for children. It is thought to spare the normal tissue. There were children from Norway, Michigan and elsewhere who had traveled to Massachusetts General for treatment of brain issues- all getting Proton Therapy. It seems to be highly coveted. We are not medical people, so we cannot endorse any specific treatment. All we can say is that so far Proton Therapy has produced an excellent outcome. As time elapses we will report future findings, symptoms. So far, so good.
Watch and waiting people-Please don't be afraid- and please, don't wait too long. You never know if your vestibular schwannoma will choke off hearing as rapidly as it did for him. In 37 months he went deaf. There are options. Plenty of options. Study them ...Carpe diem-Seize the day. My husband just got back from his long bike ride.. and we both wish you the very best. Feel free to send us personal messages with your requests to talk over the phone. We'd be glad to offer any help we can. You are not alone.
