Hi folks
I went to the specialist yesterday (8hrs return travel) to talk to him about the symptoms that have been concerning me recently and the response was as follows:
*Dull ache behind my AN ear (Dr - I cannot confirm the headaches are AN related often when someone is diagnosed with brain tumor they notice headaches more readily but it does not mean they are not related)
I tend to agree with him that it is hard to determine that the headaches are specifically related to my AN as I sometimes get headaches from from other things like stress, hormones etc, however; I think that altitude and pressure have an influence with the headaches because yesterday when I was traveling to Sydney with a change in altitude I developed pressure in my ear and consequently developed the ache behind my AN and yes I did tell him.
*Ear ache (Dr - the ear aches are most likely AN related but there is not allot I can do to stop them except recommend mild pain relief)
*Hypersensitive hearing (Dr - the hypersensitive hearing is related to your progressive hearing loss particularly the level of frequency. The only thing I can recommend at this time is to plug the ear on that side when exposed to the sounds that you are sensitive to and after surgery there will be no hearing on that side. The Dr explained there is a condition called hyperacusis and this is not caused from hearing loss it is caused by the brain interpreting sound in a particular way and an individual might hear sounds like someone turned up the volume on the world really loud. Treatment for the condition involves retraining what the brain interprets, my sensitivity is related to hearing loss at particular levels of frequency)
The specialist looked at my two MRI and confirmed that there is no notable growth since diagnosis and at this stage surgery is not recommended until my hearing deteriorates further, my everyday balance becomes a real problem or the AN starts kissing the brain stem. I liked that he doesn't recommend surgery until it is necessary and he reminded me that the surgery is major and I have to consider that there will be few months of recovery and rehabilitation. I asked the Dr what outcomes are a sure-thing after surgery and he responded saying that I will definitely be SSD and I will have balance issues, how much will depend on how my brain compensates prior to surgery. I did ask about hearing devices and he mentioned the BAHA, I asked if the BAHA could be implanted at the time of surgery and he said that he could fit the titanium post at time of surgery only adding 1/2 hour to the procedure and I would come back 3-4 months later to insert the flange. This information definitely gave me food for thought.
Thank you for your opinions and recommendation to visit to the Dr as it reassured me that my symptoms are "AN normal" and that I need to accept this as part of the norm and get on with it. The Dr did say please call if things were bothering me further and he will see me in twelve months.
I am grateful for all the information on this site as everything he talked about and responded to I could easily interpret based on a knowledge that I have slowly been building for 6 months, nothing he said is strange or unknown; so thank you forum members for your experiences.
Kimbo