First, a little backstory...
(Fair Warning: This is a loong entry.)
Before diving into this blog, I feel like a little introduction is in order. Every AN patient has their own unique story as to how they first discovered they had a tumor and I would like to share mine. Actually, my story and situation is one of the reasons I decided to start this blog. As I began researching information about acoustic neuromas and searching for other patients similar to myself, I found that there were very few young adults with neuromas. Or at least few that were talking. Most of the patient stories I found were of middle-aged and elderly patients with large neuromas that had been growing for years. I discovered that is most likely because neuromas tend to be diagnosed in individuals between the ages of 30 and 50. I kept looking desperately for another twenty-something in a situation similar to mine and came up empty-handed. So to prevent the same from happening to another young person who may find themselves in a position similar to mine, here is my story:
It was April 2007 and I was just about to complete my sophomore year at Mount Union College. As with the end of any semester, things were incredibly hectic at the time as I was preparing for finals and putting the finishing touches on the one-act play I was directing. I remember waking up one Monday morning feeling incredibly nauseous and dizzy. So much so that after an hour or so of lying in a miserable heap next to the toilet, I crawled out of the bathroom and begged my roommate to drive me to the ER. There I was diagnosed with strep throat, instructed to increase my fluid intake, and given a prescription for antibiotics. As the week progressed, the strep infection cleared but I was still dealing with sporadic bouts of vertigo and nausea. Seeing as I had already visited the ER, I figured there was nothing else to be done and resolved to finish my round of antibiotics and hope for the best.
On Thursday morning, I awoke to a loud clanging in my right ear. Noises and voices sounded echo-y and distant and, completely at a loss as to what to do, I headed to the office of the campus doctor. His diagnosis? Wax impaction. He set me up with an appointment the next day to have my ear irrigated at his office. I was doubtful about his diagnosis as I had had wax impaction once before in high school and this certainly did not feel the same. Regardless, I went to his office as instructed and endured the uncomfortable process of having a stream of water shot into my ear. The procedure, however, did nothing to restore my hearing which I quickly informed the doctor. He assured me that this was only because I now had some water in my ear and simply needed to give it some time to absorb and I would be 100% yet again. If I was still experiencing problems after the weekend, I should return to see him on Monday.
Monday rolled around and by this time sounds were no longer echo-y and distant. They were gone. I couldn't hear anything out of my right ear. I rushed straight to the doctor's office that morning to state my complaints and he quickly sent me down the street to the local ENT's office. After an unbelievably short wait, I was called back, put into a soundproof booth and given a hearing test. Even though I was convinced I had passed with flying colors, when the audiologist opened the door to let me out, he sadly shook his head and informed me that I had no usable hearing in my right ear.
I can't quite describe what I felt in that moment. If time really could freeze, then I am sure that it did in that instant. Or maybe it was my wishful thinking that it would. Just so I could have a second to process this information before having to deal with whatever the next moment would bring and all the moments that would surely follow. This was certainly my first turtle. Not awkward, just mind-numbing.
The audiologist then put me in a room to wait for the ENT. I didn't cry or shake or scream. I just sat and tried hard not to think. The ENT was a nice, middle-aged man who did a much better job of breaking the news to me than the audiologist. He even offered to call and speak with my dad (also a physician) to break the news to him. He gave me a prescription for two weeks of oral steroids with the hopes that the hearing loss was only a temporary symptom of inflammation in my ear and would resolve itself. I kept my composure and smiled and thanked him. And then cried on the entire walk back to campus. To make the situation worse, my Women's Chorus concert was that evening and in my current condition I had no idea if I had the ability or the emotional wherewithal to perform. Thankfully, my choir director was confident that I could sing sans one ear and even told me an encouraging story of a war buddy of his who lost his hearing for a week and then had it miraculously return. It did little to cheer me up.
The two weeks passed and by the time I had finished my round of steroids, the school year had ended and I was back at home for the summer. I recall during those two weeks of treatment that I would do a "hearing test" of sorts each day to see whether my hearing was returning. First, I would take my pointer finger and run it along my left ear, listening to the noise created by skin rubbing against skin. Then I would repeat this process on my right ear. It was a discouraging routine that never produced results. And it was an odd feeling, too--being able to physically touch my ear but to not be able to hear that I was touching it. It felt like someone had glued a lump of lifeless flesh to the right side of my head.
My parents decided now that I was home to take me to an ENT down at OSU to continue my care. There I was subjected to more hearing tests, an MRI, and an injection of liquid steroids into my right ear (not a pleasant experience, let me tell you). In the end, my diagnosis remained the same. Total and irreversible hearing loss in my right ear that was most likely caused by the strep throat infection I had. At my last visit at OSU, the doctor told me that there was not much else that he could do for me but that if I was interested in getting a hearing aid once I graduated and joined the workforce there were several options I could explore.
May 2007 was my last visit with an ENT. Over the next five years I grew to accept my single-sided deafness (SSD) and made the necessary adjustments so I could continue to live my life much as I had before. There were, of course, the requisite obstacles I had to overcome. Many people mistakenly think that SSD is not a huge issue as you can still hear. But losing the use of one ear can be quite debilitating and overwhelming. Especially at first. People with SSD are unable to localize sounds, have difficulty hearing when any sort of background noise is present, can barely hear (or cannot hear at all) voices and sounds that are located on their deaf side and the list goes on. And then there are the everyday inconveniences that it causes. Such as only being able to use the phone on one ear (not good for long phone conversations) or no longer being able to enjoy stereo sound. For an individual such as myself who loves music, has been a member of both orchestra and several choirs, and plays guitar, violin, and piano, this was a huge loss for me.
In January of this year I turned twenty-four and to celebrate my parents took me out to dinner at a local Mexican restaurant. (This is where my story changes from being about a girl with SSD to a girl with an acoustic neuroma.) The restaurant was noisy (as restaurants are) and since my parents had both seated themselves on my right side I was struggling to hear them throughout dinner. This brought up the topic of my hearing loss and the possibility of finally investing in a hearing device for me. About two years earlier, one of my younger brothers had come across a new SSD hearing device being introduced to the market called SoundBite. He had mentioned it to me in passing and now as we were discussing such devices over our burritos and refried beans I recalled what he had told me. I told my dad who appeared to be really interested in the product and immediately told me to do a bit more research on it and see what I could find out.
After a quick internet search the next day, I discovered that the SoundBite was not only now available to patients but that the Cleveland Clinic, only a little over an hour away from where we lived, was one of the few locations in the states that offered it. I quickly scheduled a consult with a Dr. Erika Woodson to see if I was eligible for this device.
The appointment was set for February 3, 2012 and seeing as it wasn't a major ordeal I decided to go alone. I was instructed to bring with me all of my records and testing from 2007, including the MRI I had had done. For such a huge medical institution, my wait time was incredibly short and within thirty minutes of arriving I had already been triaged and put in a room to wait for the doctor. Dr. Woodson arrived shortly after. She was a younger doctor, probably in her mid-thirties, with a gentle smile and the palest blue eyes I had ever seen. I was immediately at ease with her and when she asked me to recount what had happened back in '07 all of my doctor's office jitters vanished. She listened intently while I explained how a virus had taken my hearing and once I had finished my story she just smiled and paused for a moment. I should have known from the pause that something was wrong.
Much to my surprise she kindly informed me that she had reviewed the MRI films I had brought with me and found a tumor. A tumor! Turtle #2. She said that it was very small (only 2mm) but that she believed that it was the tumor that had caused my hearing loss back in 2007 and not a viral infection. She pulled up the MRI images and pointed it out to me but, honestly, I couldn't see anything. I quietly assured myself that this nice woman was surely mistaken and nothing was wrong. She had other ideas though. She wrote down the name of the type of tumor it was, an acoustic neuroma or, vestibular schwannoma (even the name sounded improbable) and told me she wanted me to have another MRI done to see whether or not it had grown over the last five years.
Determined to prove her wrong, I scheduled my MRI for February 13. The only way to know for sure that there wasn't something growing in my head was to have the images to back me up. The actual MRI was uneventful. I'm claustrophobic but I had to keep my eyes closed the entire time anyway so there wasn't much of an issue there. And they were nice enough to pipe in my favorite radio station and tuck me in with a blanket to keep me from freezing (I'm one of those people who is always cold). At the end of my session, the tech handed me a CD of the images and told me I could stop in the following day to pick up the radiologist's report.
Now, I have no training on how to read MRIs but I figured if there was a tumor growing in my head it would be pretty obvious on the images. I went home, popped the CD into my laptop and began to randomly click through the fifty or so images. I didn't really know what I was looking for but I had a feeling I would know it when I saw it. About twenty images in, my heart stopped. There on the right side of my brain was a tiny mass about the size of 1/3 of my pinkie finger. The contrast solution I had been injected with during the MRI had caused it to show up bright white against the otherwise gray and unremarkable topography of my brain. I couldn't breathe for a moment and then the tears of shock and disbelief came. Dr. Woodson was right. And instead of proving her wrong, my worst nightmare had just come true. I really did have a brain tumor.
The radiologist report that I picked up the next day confirmed that I did in fact have a 1.3cm vestibular schwannoma in my right auditory canal that was just starting to bulge out onto my brain. In less than five years, it had gotten six times larger. I frantically called up the Cleveland Clinic to request an appointment with Dr. Woodson. I was on the books to see her again on March 16th but I simply couldn't wait that long. Thankfully, she had had a cancellation for the following afternoon and I took it. Dad came with me this time seeing as this was now very much a major deal.
The appointment became very serious very quickly as Dr. Woodson informed my dad and me that due to my age and the size of the tumor, my only option was to have it surgically removed. And the sooner the better. She thoroughly explained the entire process which would involve her drilling a hole in my head behind my right ear to remove the tumor, then packing the hole with fat taken from an incision in my abdomen. The entire surgery would take 8 hours and then I would have a 4-6 week recovery period.
I would be lying if I said I wasn't completely overwhelmed by the situation. Sure, I had been doing my own research on the internet beforehand so much of what she said I expected to hear. But to actually sit in a room with a flesh and blood doctor and have them tell you this in person, well, that's an entirely different experience. I left the appointment stunned, exhausted, and more than ready to have this thing taken out of my head.
And that's it folks. That's where I am in my story. All that follows from this moment is what my little blog will attempt to document.
(Note: Some of the entries that follow this one were actually written during and before some of these February events so my apologies for any confusion this may cause. The reason is simply that I had started typing up mini-entries on my phone before I decided to start this blog.)
Before diving into this blog, I feel like a little introduction is in order. Every AN patient has their own unique story as to how they first discovered they had a tumor and I would like to share mine. Actually, my story and situation is one of the reasons I decided to start this blog. As I began researching information about acoustic neuromas and searching for other patients similar to myself, I found that there were very few young adults with neuromas. Or at least few that were talking. Most of the patient stories I found were of middle-aged and elderly patients with large neuromas that had been growing for years. I discovered that is most likely because neuromas tend to be diagnosed in individuals between the ages of 30 and 50. I kept looking desperately for another twenty-something in a situation similar to mine and came up empty-handed. So to prevent the same from happening to another young person who may find themselves in a position similar to mine, here is my story:
It was April 2007 and I was just about to complete my sophomore year at Mount Union College. As with the end of any semester, things were incredibly hectic at the time as I was preparing for finals and putting the finishing touches on the one-act play I was directing. I remember waking up one Monday morning feeling incredibly nauseous and dizzy. So much so that after an hour or so of lying in a miserable heap next to the toilet, I crawled out of the bathroom and begged my roommate to drive me to the ER. There I was diagnosed with strep throat, instructed to increase my fluid intake, and given a prescription for antibiotics. As the week progressed, the strep infection cleared but I was still dealing with sporadic bouts of vertigo and nausea. Seeing as I had already visited the ER, I figured there was nothing else to be done and resolved to finish my round of antibiotics and hope for the best.
On Thursday morning, I awoke to a loud clanging in my right ear. Noises and voices sounded echo-y and distant and, completely at a loss as to what to do, I headed to the office of the campus doctor. His diagnosis? Wax impaction. He set me up with an appointment the next day to have my ear irrigated at his office. I was doubtful about his diagnosis as I had had wax impaction once before in high school and this certainly did not feel the same. Regardless, I went to his office as instructed and endured the uncomfortable process of having a stream of water shot into my ear. The procedure, however, did nothing to restore my hearing which I quickly informed the doctor. He assured me that this was only because I now had some water in my ear and simply needed to give it some time to absorb and I would be 100% yet again. If I was still experiencing problems after the weekend, I should return to see him on Monday.
Monday rolled around and by this time sounds were no longer echo-y and distant. They were gone. I couldn't hear anything out of my right ear. I rushed straight to the doctor's office that morning to state my complaints and he quickly sent me down the street to the local ENT's office. After an unbelievably short wait, I was called back, put into a soundproof booth and given a hearing test. Even though I was convinced I had passed with flying colors, when the audiologist opened the door to let me out, he sadly shook his head and informed me that I had no usable hearing in my right ear.
 |
| Numb |
The audiologist then put me in a room to wait for the ENT. I didn't cry or shake or scream. I just sat and tried hard not to think. The ENT was a nice, middle-aged man who did a much better job of breaking the news to me than the audiologist. He even offered to call and speak with my dad (also a physician) to break the news to him. He gave me a prescription for two weeks of oral steroids with the hopes that the hearing loss was only a temporary symptom of inflammation in my ear and would resolve itself. I kept my composure and smiled and thanked him. And then cried on the entire walk back to campus. To make the situation worse, my Women's Chorus concert was that evening and in my current condition I had no idea if I had the ability or the emotional wherewithal to perform. Thankfully, my choir director was confident that I could sing sans one ear and even told me an encouraging story of a war buddy of his who lost his hearing for a week and then had it miraculously return. It did little to cheer me up.
The two weeks passed and by the time I had finished my round of steroids, the school year had ended and I was back at home for the summer. I recall during those two weeks of treatment that I would do a "hearing test" of sorts each day to see whether my hearing was returning. First, I would take my pointer finger and run it along my left ear, listening to the noise created by skin rubbing against skin. Then I would repeat this process on my right ear. It was a discouraging routine that never produced results. And it was an odd feeling, too--being able to physically touch my ear but to not be able to hear that I was touching it. It felt like someone had glued a lump of lifeless flesh to the right side of my head.
My parents decided now that I was home to take me to an ENT down at OSU to continue my care. There I was subjected to more hearing tests, an MRI, and an injection of liquid steroids into my right ear (not a pleasant experience, let me tell you). In the end, my diagnosis remained the same. Total and irreversible hearing loss in my right ear that was most likely caused by the strep throat infection I had. At my last visit at OSU, the doctor told me that there was not much else that he could do for me but that if I was interested in getting a hearing aid once I graduated and joined the workforce there were several options I could explore.
May 2007 was my last visit with an ENT. Over the next five years I grew to accept my single-sided deafness (SSD) and made the necessary adjustments so I could continue to live my life much as I had before. There were, of course, the requisite obstacles I had to overcome. Many people mistakenly think that SSD is not a huge issue as you can still hear. But losing the use of one ear can be quite debilitating and overwhelming. Especially at first. People with SSD are unable to localize sounds, have difficulty hearing when any sort of background noise is present, can barely hear (or cannot hear at all) voices and sounds that are located on their deaf side and the list goes on. And then there are the everyday inconveniences that it causes. Such as only being able to use the phone on one ear (not good for long phone conversations) or no longer being able to enjoy stereo sound. For an individual such as myself who loves music, has been a member of both orchestra and several choirs, and plays guitar, violin, and piano, this was a huge loss for me.
In January of this year I turned twenty-four and to celebrate my parents took me out to dinner at a local Mexican restaurant. (This is where my story changes from being about a girl with SSD to a girl with an acoustic neuroma.) The restaurant was noisy (as restaurants are) and since my parents had both seated themselves on my right side I was struggling to hear them throughout dinner. This brought up the topic of my hearing loss and the possibility of finally investing in a hearing device for me. About two years earlier, one of my younger brothers had come across a new SSD hearing device being introduced to the market called SoundBite. He had mentioned it to me in passing and now as we were discussing such devices over our burritos and refried beans I recalled what he had told me. I told my dad who appeared to be really interested in the product and immediately told me to do a bit more research on it and see what I could find out.
After a quick internet search the next day, I discovered that the SoundBite was not only now available to patients but that the Cleveland Clinic, only a little over an hour away from where we lived, was one of the few locations in the states that offered it. I quickly scheduled a consult with a Dr. Erika Woodson to see if I was eligible for this device.
The appointment was set for February 3, 2012 and seeing as it wasn't a major ordeal I decided to go alone. I was instructed to bring with me all of my records and testing from 2007, including the MRI I had had done. For such a huge medical institution, my wait time was incredibly short and within thirty minutes of arriving I had already been triaged and put in a room to wait for the doctor. Dr. Woodson arrived shortly after. She was a younger doctor, probably in her mid-thirties, with a gentle smile and the palest blue eyes I had ever seen. I was immediately at ease with her and when she asked me to recount what had happened back in '07 all of my doctor's office jitters vanished. She listened intently while I explained how a virus had taken my hearing and once I had finished my story she just smiled and paused for a moment. I should have known from the pause that something was wrong.
 |
| Freaked |
Determined to prove her wrong, I scheduled my MRI for February 13. The only way to know for sure that there wasn't something growing in my head was to have the images to back me up. The actual MRI was uneventful. I'm claustrophobic but I had to keep my eyes closed the entire time anyway so there wasn't much of an issue there. And they were nice enough to pipe in my favorite radio station and tuck me in with a blanket to keep me from freezing (I'm one of those people who is always cold). At the end of my session, the tech handed me a CD of the images and told me I could stop in the following day to pick up the radiologist's report.
Now, I have no training on how to read MRIs but I figured if there was a tumor growing in my head it would be pretty obvious on the images. I went home, popped the CD into my laptop and began to randomly click through the fifty or so images. I didn't really know what I was looking for but I had a feeling I would know it when I saw it. About twenty images in, my heart stopped. There on the right side of my brain was a tiny mass about the size of 1/3 of my pinkie finger. The contrast solution I had been injected with during the MRI had caused it to show up bright white against the otherwise gray and unremarkable topography of my brain. I couldn't breathe for a moment and then the tears of shock and disbelief came. Dr. Woodson was right. And instead of proving her wrong, my worst nightmare had just come true. I really did have a brain tumor.
The radiologist report that I picked up the next day confirmed that I did in fact have a 1.3cm vestibular schwannoma in my right auditory canal that was just starting to bulge out onto my brain. In less than five years, it had gotten six times larger. I frantically called up the Cleveland Clinic to request an appointment with Dr. Woodson. I was on the books to see her again on March 16th but I simply couldn't wait that long. Thankfully, she had had a cancellation for the following afternoon and I took it. Dad came with me this time seeing as this was now very much a major deal.
The appointment became very serious very quickly as Dr. Woodson informed my dad and me that due to my age and the size of the tumor, my only option was to have it surgically removed. And the sooner the better. She thoroughly explained the entire process which would involve her drilling a hole in my head behind my right ear to remove the tumor, then packing the hole with fat taken from an incision in my abdomen. The entire surgery would take 8 hours and then I would have a 4-6 week recovery period.
I would be lying if I said I wasn't completely overwhelmed by the situation. Sure, I had been doing my own research on the internet beforehand so much of what she said I expected to hear. But to actually sit in a room with a flesh and blood doctor and have them tell you this in person, well, that's an entirely different experience. I left the appointment stunned, exhausted, and more than ready to have this thing taken out of my head.
And that's it folks. That's where I am in my story. All that follows from this moment is what my little blog will attempt to document.
(Note: Some of the entries that follow this one were actually written during and before some of these February events so my apologies for any confusion this may cause. The reason is simply that I had started typing up mini-entries on my phone before I decided to start this blog.)
I did not realize your struggle Amanda! It is wonderful to hear of your successful surgery. Have a speedy recovery...and keep inspiring!
ReplyDeleteHi amanda, so glad you are doing ok, this is an older post but just wandered if you would go back to the same dr and hospital if you had to go through it again. If you liked it there and if you really liked your dr. Any information appreciated. Hope you are still doing great and wandered how your eye is doing. Where are you now. So nice you are seeing the world.
ReplyDeleteAmanda,
ReplyDeleteI have an appointment with Dr. Woodson on June 6 for acoustic neuroma on the right side. I was wondering whether the option of Gamma knife surgery ever came up for you. Thanks PN
Hi Anonymous,
DeleteI'm so happy to hear you have an appointment with Dr. Woodson. She really is a wonderful person and surgeon and I think you'll be very happy with your decision. Because of my age at the time of my surgery (24) radiation wasn't really an option--mainly because it's a fairly new approach and the long term effects aren't fully known. She advised against it since I was so young and things like having kids, etc are still in my future. However, for older patients it would certainly be an option and she told me as much during my consult. I would certainly bring it up with her during your visit, but I'm sure she will. She covered all of the options and then gave suggestions as to which she thought was best. The decision is obviously up to you, but I trusted her judgment.