Hello everyone!
My name is Sophia and I am 31 years old living in the Los Angeles area.
In May 2009, I noticed a change in my hearing. Specifically, my left ear started ringing suddenly and continued to do so...well...until today actually! When using a telephone, I found myself unable to use my left ear anymore as I could no longer decipher what the caller was saying. I had a sense of fullness in my ear and attributed all of these symptoms to possible ear wax. I flushed my ear out with Debrox to no avail and then worried myself into a panic thinking if I could have actually injured my eardrum with all of my efforts to remove non existent ear wax buildup!
One day in September 2009, after catching a cold, I woke up with an excruciating pain in my left ear. It literally felt as if someone was stabbing my ear with a knife! I ran to my primary doctor (Edwin Chan, Arcadia, CA) confident that I had an ear infection and left more confused when he said that "the ear looks fine." Being the wonderful doctor that he is, he referred me to an ENT (Leon Bachoura, Duarte, CA) to assess for a possible middle ear infection. I went to the ENT in October 2009 fully expecting to leave with a prescription for my "middle ear infection" and instead was told once again "the ear looks fine." I was sent for a hearing test and suddenly a wave of panic hit me.
Could something really be wrong?
I had the hearing test. While in the sound proof booth, I didn't always hear the tones directed at my left ear but could usually feel the vibrations from the sound waves and so I pushed the buzzer which recorded that I heard a tone. Then the voice recognition test happened. When using only my left ear, I couldn't repeat the words the doctor asked me to repeat if you paid me $1,000. I started to cry as I thought to myself, "I am deaf!" (Not really)
The ENT informed me that I had "significant hearing loss" in my left ear and that I was going to need a hearing aid and he was ordering an MRI to make sure I didn't "have anything wrong with the brain."
WHAT?! SOMETHING WRONG WITH MY BRAIN?!
After being reassured on the phone by my husband Greg, I scheduled another appointment with my primary doctor to have complete blood work done and scheduled the MRI. My bloodwork came back normal with no indications that my sudden hearing loss was due to any kind of autoimmune disease. I did my online research and was certain that I had an Acoustic Neuroma. The MRI completed on 10/20/09 confirmed a 1.3cm AN.
Since being diagnosed, I have started becoming more aware of my symptoms. The hearing loss is documented at 40% and the ringing is constant. But now, I've begun to notice when I misstep while walking the stairs and how I get dizzy while reading and question my sudden onsets of fatigue and the headaches that I previously thought were migraines. I now wonder if they are all related to the AN or is all of this just in my head?
I am blessed to be employed by the County of Los Angeles as a Children's Social Worker and therefore have excellent health insurance with Blue Shield. I did my research and requested a referral to the House Ear Clinic. I later learned that while the HEC is contracted with Blue Shield, they are not currently a part of my IPA HMO Network...Ugh! So the referral was taking longer than normal.
In the meantime, I had my primary doctor submit another referral to a neurosurgeon who is part of my IPA. I met with the neurosurgeon (William Caton III, Pasadena, CA) who explained that based on the location of my tumor, he would have to remove a good portion of my skull as that is where the majority of the tumor rests. This will certainly cause hearing loss and damage to the facial nerve. He recommends Cyberknife and fortunate for me he has his very own brand spanking new CK machine expected to be delivered in December 2009. I asked about surgery as an option and he said that while he is a good surgeon (chief of neurosurgery at Huntington Hospital, Pasadena, CA) willing to do surgery, he would advise CK.
He referred me to a Radiation Oncologist (Albert Mak, Alhambra, CA) who during my consult informed me that he has "never" used the new CK machine arriving soon but has been using other radiosurgery methods for some time. My friend who went with me said "he's trying to say that he knows how to drive a car, he just has never driven THIS car." LOL! I asked a ton of questions and the doctor, trying to be funny, said, "I think you've asked enough questions" to which I responded, "It's my brain so I get to ask as many questions as I want!" He was nice, I think he was just not prepared for me
I went back to meet with the neurosurgeon who clarified that he is very experienced in CK and apparently has been using the CK machine at Stanford for the last 8 years. Now he has his own. He also clarified that he and the radiation oncologist and the physicist will be working together to develop the treatment plan which is proposed at 3 consecutive day sessions. I told him that I still have wicked headaches and he prescribed Ibuprofen and ordered some neck x-rays to make sure the source is not something else. I asked about getting a hearing aid and he explained that traditional hearing aids won't help because the damage was to the nerve. WHAT? I was under the assumption that I would have some treatment, whether surgery or radiation, and then get a hearing aid and move on. He explained that there were some devices that could help improve my hearing by using my good ear and that those could be discussed in the future. He also said that I might regain some hearing after the CK.
Could CK really be that great? It seems too good to be true.
My insurance finally sent me the denial for the HEC so I used my PPO option and today met the famous Dr. House, (like my favorite TV show...lol). He advised surgery, specifically Translab. He said that there are unknown risks with radiation and advised surgery. He said I was a good candidate for all 3 types of surgery it was just a matter of preference and/or efforts to save my existing hearing. He reported that I could have a BAHA implanted at the same time as the surgery but wouldn't be fitted for the actual aid until a few weeks after the surgery. This means that I would likely be deaf in my left ear for a short period of time. I met with a surgery nurse who suggested having some diagnostic tests (hearing, reflex, brainstem) completed to determine which surgical approach would be the most beneficial.
Instead of sending me to the HEC, my insurance gave me a referral to USC Head and Neck to meet with an otolarygologist (Dennis Meceri, Los Angeles, CA). I tried to schedule the appointment but was informed that the doctor doesn't schedule new patients until the authorization includes specific billing codes for treatment. So now I am trying to get my ENT to resubmit the request which include some diagnostic tests. Later this month have an appointment with another neurosurgeon (Gregory Withers, Arcadia, CA).
My husband wittily asked, "Do the other doctors have their own institute named after them with a giant model of the how the ear works?" I plan on appealing the insurance's denial and don't really want to proceed with HEC right now since I would have to pay 20% of the bill...ouch!
I will admit that all of the information, while very helpful, is overwhelming. What did people do before the internet?
When I was diagnosed in October, I was in the process of transferring to a specialized unit at work and as a result had just finished transferring all of my assigned cases. It seemed ideal to postpone my transfer and take a leave. I am currently home on disability to soak all of this in and come up with a treatment plan. My work requires me to drive, interview adults and children regarding abuse and/or neglect and I frequently testify in court, all of which needs me to be able to hear.
I am worried about long term effects of radiation and I don't like what I've read about the possible side effects of the steroids. I don't like the notion of having "brain surgery" especially since I have a 20 month old daughter that I would likely not be able to fully care for during recovery from surgery. I'm scared of the idea of being deaf in my ear and I like being able to smile so I don't want to chance facial nerve damage.
I'M SO CONFUSED!
Could it be that all of my symptoms are related to the AN? It seems like everything is getting worse...or am I just more aware of it all now? Either way, the headaches are the worst! I feel like someone hit me with a baseball bat at the back of my head. My neck is stiff and I want to just push on the base of my skull.
Thanks for letting me vent and share my story...despite the end remaining uncertain.
Sophia (mssophy)
1.3 cm AN left side diagnosed 10/20/09
