Initially, I introduced myself here on the forum without divulging too much of my current medical situation, as I like to be more private about such things. However I think that coming to terms and reaching out for support shouldn't be considered a weakness and that perhaps my own personal journey may be interesting to some in a similar situation.
Since finding out I had a small to medium size acoustic neuroma on my left auditory nerve I have been a wreck, terrified at the online stories I've read and fearful of the future. I lost a lot of my high frequency hearing not long after the diagnosis and gained what could only be described as painfully loud, screeching tinnitus at around 4 kHz. My quality of life was shattered and felt if I was a shell of my former self, driving up any previous anxiety and depression.
Fast forward a few months after numerous visits to doctors and specialists of various backgrounds I was recommended that in my case, gamma knife would be the best treatment option to stabilize the tumor and possibly preserve some hearing due to the size and location. During this time I feel like I had gained some ground on the tinnitus and was fading to a hiss rather than a constant pure tone.
Day of the procedure:
I am surrounded by the doctors who have helped me through the ordeal while I sit upon the gamma knife machine. A radiation oncologist, a neuro surgeon, a neurotologist, physicist and a very sweet gamma knife nurse/coordinator who was so kind to me. It was surreal, just several months back I felt great, now, I felt like a guinea pig. Never more have I wanted to be someone else in the room, alas that was not the case.
The ultra-tight fitting mask gets applied to my face and everyone leaves the room to observe me from behind a distant window. Without the Ativan I had popped a couple hours prior, this would have been extremely nerve wracking but I am focusing on a positive outcome I have read about. The doors to the machine open and I slide backwards on the table until it locks into place. I hear nothing but my tinnitus until a voice comes over the intercom that I am already a couple of minutes into the treatment and begins to play SiriusXM for me. The music was terrible but yet, extremely comforting. You're 20 minutes in, says the next voice and the table makes minor adjustments throughout the treatment. Almost 40 agonizing minutes pass until I hear, you're done!
The next several hours it felt like nothing had happened until I got home, a very bad headache and pain where I could only assume the acoustic neuroma resides, all of which I had been warned about. Tinnitus much lower than before but attributing this to the Ativan... Unfortunately, later that night Diplacusis arises for the first time and I hear sound at different pitches between ears only in higher frequencies. Ugggh!!!
Sleep was difficult although I was exhausted, headache, pain and what feels like swelling in my ear and now Diplacusis. Tinnitus is still low after 24 hours so we will see how things progress. I have been in touch with the neurotologist and informed him as advised. I think the most important thing is to forget all expectations and live day by day and try to adapt as best as possible. I am sure there will be more changes as time goes on but I am genuinely hoping that things fall into a happy medium for me. I feel like I have suffered so much already and envy those that have a "normal" life.
I know this is a super long post and appreciate those who have the patience to read it, we are all suffering in our own way but it makes a world of difference when you can share your pain and experience with others.
Have a wonderful day!
Since finding out I had a small to medium size acoustic neuroma on my left auditory nerve I have been a wreck, terrified at the online stories I've read and fearful of the future. I lost a lot of my high frequency hearing not long after the diagnosis and gained what could only be described as painfully loud, screeching tinnitus at around 4 kHz. My quality of life was shattered and felt if I was a shell of my former self, driving up any previous anxiety and depression.
Fast forward a few months after numerous visits to doctors and specialists of various backgrounds I was recommended that in my case, gamma knife would be the best treatment option to stabilize the tumor and possibly preserve some hearing due to the size and location. During this time I feel like I had gained some ground on the tinnitus and was fading to a hiss rather than a constant pure tone.
Day of the procedure:
I am surrounded by the doctors who have helped me through the ordeal while I sit upon the gamma knife machine. A radiation oncologist, a neuro surgeon, a neurotologist, physicist and a very sweet gamma knife nurse/coordinator who was so kind to me. It was surreal, just several months back I felt great, now, I felt like a guinea pig. Never more have I wanted to be someone else in the room, alas that was not the case.
The ultra-tight fitting mask gets applied to my face and everyone leaves the room to observe me from behind a distant window. Without the Ativan I had popped a couple hours prior, this would have been extremely nerve wracking but I am focusing on a positive outcome I have read about. The doors to the machine open and I slide backwards on the table until it locks into place. I hear nothing but my tinnitus until a voice comes over the intercom that I am already a couple of minutes into the treatment and begins to play SiriusXM for me. The music was terrible but yet, extremely comforting. You're 20 minutes in, says the next voice and the table makes minor adjustments throughout the treatment. Almost 40 agonizing minutes pass until I hear, you're done!
The next several hours it felt like nothing had happened until I got home, a very bad headache and pain where I could only assume the acoustic neuroma resides, all of which I had been warned about. Tinnitus much lower than before but attributing this to the Ativan... Unfortunately, later that night Diplacusis arises for the first time and I hear sound at different pitches between ears only in higher frequencies. Ugggh!!!
Sleep was difficult although I was exhausted, headache, pain and what feels like swelling in my ear and now Diplacusis. Tinnitus is still low after 24 hours so we will see how things progress. I have been in touch with the neurotologist and informed him as advised. I think the most important thing is to forget all expectations and live day by day and try to adapt as best as possible. I am sure there will be more changes as time goes on but I am genuinely hoping that things fall into a happy medium for me. I feel like I have suffered so much already and envy those that have a "normal" life.
I know this is a super long post and appreciate those who have the patience to read it, we are all suffering in our own way but it makes a world of difference when you can share your pain and experience with others.
Have a wonderful day!
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