The question I'm asked most frequently is, "How did you know you had a brain tumor?" The answer is, I didn't. I found out less than a day after my (amazing, wonderful and authentically-caring) ear doctor had scheduled an MRI appointment for me, and seriously, I was completely floored. Stunned. In shock.
In fact, after having put off a hearing test for over two years (yes, that long), I would feebly attempt to scare myself into going, thinking to myself, You know, Self, you really should make that appointment, 'cause what if you have, like, a tumor or something?, after which I would mentally reply back, "It's NOT a tum-ah!" Well, as you know, I finally went for a visit, and shockingly, discovered it was a tum-ah after all.
The original purpose of this blog was to use my experience to provide other AN patients a more candid destination in locating information about acoustic neuromas versus what I found during my own research -- harrowing websites whose surgical horror stories only succeeded in scaring the sh*t out of me as opposed to demonstrating it as an understandably-challenging diagnosis that can eventually be overcome. So for those of you who are here thinking you may have a tum-ah, rest assured. You, like Arnold, probably don't have one. However, here are a list of my symptoms, pre-diagnosis, that I eventually discovered were core ingredients that distinguish the elusive acoustic neuroma:
One-sided hearing loss. I first noticed the hearing ability on my right side wasn't as good as my left side about two years ago. I compared both sides by listening to one iPod earphone at a time -- the volume was noticably different between the two. Like a moron, I attributed the loss to old age (yes, at the dehabilitating age of 28) and ignored it for a couple years. Though this past year, my hearing declined rather dramatically over a few months, and this time wasn't only a matter of reduced volume, but sound distortion. My hearing test confirmed both these points. As the tumor grows in the nerve which is responsible for both hearing and balance (a loss of balance being another AN indicator, which didn't affect me, though it could have been disguised by my natural clumsiness), this in itself was a red flag.
Tinnitus. Tinnitus (prounounced tin-ihh-tis; not tin-i-tis, as it is commonly mispronounced) is defined as "the perception of sound in the human ear in the absence of corresponding external sound(s)", or as I like to call it, that annoying, incessant ringing in my ear make it stop someone please. My tinnitus (which unfortunately wasn't cured with the surgery) is competitive and likes to increase its volume, indicating its overbearing presence, whenever I find myself stressed or, more obnoxiously, whence in a loud environment. It's extremely annoying, but like any other incessant nuisance, has come to exist relatively unnoticed until I purposefully think about it.
Facial numbness. As a result of the (unbeknownst to me at the time) tum-ah having stretched and pressed upon my facial nerve, the right side of my face had developed a slight numbing sensation -- much like the feeling of novacaine before it's almost worn off. It affected the lower portion of my jaw and tongue, and like the tinnitis, was more apparent during times of stress. Fortunately it disappeared with the surgical removal of the tum-ah.
Okay, so I know you're all, Uhhh, Amanda. You're saying you had all these symptoms -- and didn’t get them checked out? Are you stupid or somethin'?" I know. I agree. Looking back, I find it kind of ridiculous that I ignored them for so long. But I was busy. I had people to see, places to go, a job to do. Honestly, a tum-uh is the last thing I -- or anyone -- should expect to have. I mean, up until my diagnosis, I had lived a healthy existence relatively devoid of doctors and of being sick. Little did I know I'd had a slow-growing, benign tumor developing within me over the past decade -- a truth that still remains unfathomable to me.
Yet I've learned from my experience and I hope you can too. My advice is, short of becoming a hypochondriac, is to listen to what your body is telling you. If something seems alarming to you, get it checked out. And get those proper annual checkups which will tell you if something's wrong when your body isn't able to tell you otherwise. The good news is our bodies are strong enough to recover from almost any malady, and I consider myself proof of that, having emerged from this whole crazy experience as a stronger, more educated, and now, tum-ah-less ninja force.
Tuesday, October 30, 2007
Wednesday, October 24, 2007
I'm back -- and I survived!
After two-weeks it feels good to be back home! But first, before I continue: Sharon Lewis, everyone.
(insert rousing applause here)
I want to thank my Mom for all her help, considering everything she's done, but especially for doing such a good job in communicating here with you guys. It was important for me to feel as if your amazing gestures and well-wishes were being reciprocated, and I think Mom accomplished that, particularly amongst all the Grey's Anatomy-esque drama that transpired.
Anyway, hello out there! I feel like it's been so long. Probably because it has. It's been two weeks since my surgery and I am so happy to finally have it behind us -- truly, the worst has to be over. I'm finally back in San Francisco and, following yesterday's first post-operative appointment (the stitches were removed, making my scar look about 2% less Frankenstein-ish than before), and now officially consider myself in the Recovery Mode Phase. Since leaving the hospital, I've found that every day is better than the previous, and I'm really grateful to have Mom around since my energy level is still pretty low. I'm also glad it doesn't hurt as much to read the computer because I couldn't wait to get a new post up to say hi to everyone.
So, after having spent a week in the hospital -- and particularly after having never endured a medical emergency in my life -- I have, a million things I have to say, though for the sake of time I thought that perhaps I'd just share my top three observations (for now).
Observation #1: Brain surgery doesn't feel so good.
During my pre-op appointment, one my doctors warned me that I'd wake up after the operation feeling like I'd been hit by a Mac Truck. While he was indeed correct in that assessment, he unfortunately neglected to mention it would follow by the warm, fuzzy feeling of jumping out a plane without a parachute, rolling down a prickly cactus-ridden cliff onto a highway and subsequently run over by a gang of Hell's Angels. In other words, it was a bit painful. In fact, I'd say that week's little adventure could pass for some quality Navy Seal training. Even worse than the pain, though, if possible, was having to endure the constant nausea and dizziness. I couldn't even put my favorite rose-scented balm on my lips without feeling horrendously ill. Conveniently, I noted how probably 80% of TV commercials are food-related, relegating one of my main escapes, television, virtually impossible to endure. Fortunately, the onslaught of drugs running through my veins somehow made wall-watching a sufficient pastime.
Observation #2: Odds are odd.
After this experience I've become immune to the acknowledging the theory of low odds, as well as the terms 'rare' and 'low percentage'. After being afflicted with an acoustic neuroma in the first place (odds are 1 in 100,000), and the subsequent CSF leak (1 in 10 AN patients), I think I'm officially over observing those terms at face value. And yes, sure, I'm probably bitter. I deserve to be. So if something 'rare' and 'against the odds' doesn't happen between me and a lotto ticket sometime within the next year, bitter won't even be the appropriate term.
Observation #3: I just had brain surgery.
I still can't believe it. I'm anxious to see people though I'm still somewhat in hiding, as fatigue is a bit overpowering at times, not to mention I've still got quite a bit of scarring -- including some unplanned and unexpected souvenier-scars I (perhaps permanently) aquired on my forehead as a result of a too-tight bandage. The fun never ends, people.
So, I could go on forever, but think I'm going to take a nap instead (no offense). In the meantime, and while I hate to sound like a broken record, thanks to you all so much for your total awesomeness while we go through this. I was notified of all your texts, cards, and communication while inthat torture chamber the hospital, and each and every one of you made it that much easier to endure. Thank you, thank you, thank you!
Lots of love,
Amanda
(insert rousing applause here)
I want to thank my Mom for all her help, considering everything she's done, but especially for doing such a good job in communicating here with you guys. It was important for me to feel as if your amazing gestures and well-wishes were being reciprocated, and I think Mom accomplished that, particularly amongst all the Grey's Anatomy-esque drama that transpired.
Anyway, hello out there! I feel like it's been so long. Probably because it has. It's been two weeks since my surgery and I am so happy to finally have it behind us -- truly, the worst has to be over. I'm finally back in San Francisco and, following yesterday's first post-operative appointment (the stitches were removed, making my scar look about 2% less Frankenstein-ish than before), and now officially consider myself in the Recovery Mode Phase. Since leaving the hospital, I've found that every day is better than the previous, and I'm really grateful to have Mom around since my energy level is still pretty low. I'm also glad it doesn't hurt as much to read the computer because I couldn't wait to get a new post up to say hi to everyone.
So, after having spent a week in the hospital -- and particularly after having never endured a medical emergency in my life -- I have, a million things I have to say, though for the sake of time I thought that perhaps I'd just share my top three observations (for now).
Observation #1: Brain surgery doesn't feel so good.
During my pre-op appointment, one my doctors warned me that I'd wake up after the operation feeling like I'd been hit by a Mac Truck. While he was indeed correct in that assessment, he unfortunately neglected to mention it would follow by the warm, fuzzy feeling of jumping out a plane without a parachute, rolling down a prickly cactus-ridden cliff onto a highway and subsequently run over by a gang of Hell's Angels. In other words, it was a bit painful. In fact, I'd say that week's little adventure could pass for some quality Navy Seal training. Even worse than the pain, though, if possible, was having to endure the constant nausea and dizziness. I couldn't even put my favorite rose-scented balm on my lips without feeling horrendously ill. Conveniently, I noted how probably 80% of TV commercials are food-related, relegating one of my main escapes, television, virtually impossible to endure. Fortunately, the onslaught of drugs running through my veins somehow made wall-watching a sufficient pastime.
Observation #2: Odds are odd.
After this experience I've become immune to the acknowledging the theory of low odds, as well as the terms 'rare' and 'low percentage'. After being afflicted with an acoustic neuroma in the first place (odds are 1 in 100,000), and the subsequent CSF leak (1 in 10 AN patients), I think I'm officially over observing those terms at face value. And yes, sure, I'm probably bitter. I deserve to be. So if something 'rare' and 'against the odds' doesn't happen between me and a lotto ticket sometime within the next year, bitter won't even be the appropriate term.
Observation #3: I just had brain surgery.
I still can't believe it. I'm anxious to see people though I'm still somewhat in hiding, as fatigue is a bit overpowering at times, not to mention I've still got quite a bit of scarring -- including some unplanned and unexpected souvenier-scars I (perhaps permanently) aquired on my forehead as a result of a too-tight bandage. The fun never ends, people.
So, I could go on forever, but think I'm going to take a nap instead (no offense). In the meantime, and while I hate to sound like a broken record, thanks to you all so much for your total awesomeness while we go through this. I was notified of all your texts, cards, and communication while in
Lots of love,
Amanda
Monday, October 22, 2007
Happy Birthday Amanda! (aka) Surgery Super Star!
Today is Amanda's birthday and it will be a fabulous day. We are still staying in sunny Menlo Park temporarily.
This has been such a blessing to be able to stay here in this beautiful area where everything is near, no parkiing problems, no hills to climb. We will be having a small celebration this evening with Jon and Catherine, Amanda and myself either at a local restaurant (if she feels up to it) or take out! It won't be like her other martini toasting, music playing, club dancing birthdays from the past. But it will be one that we will toast her accomplishments in getting thru these many obstacles with fortitude and grace. We her parents are so proud of her and her continued courage.
Amanda is walking more, and getting fresh air. She still has trouble with too much stimuli, or able to focus on a computer, and she tires easily. But this will get better and better as the healing phase continues to progress.
We have a visit with her Doctors on Tuesday. She probably will get her stitches out, and we will learn how to take care of the next phase of her recouperation. If the prognosis is good, we will move to her apartment in San Francisco, California on Wednesday.
P.S. More Drama for the Lewis Family -- Ryan, our son, is living in San Diego where the fires are 20 miles AWAY. His business has shut down, and they are telling everyone to stay indoors because the air quality is so bad! Ryan is buying floaties in preparation for a water evacuation.
All for now, Love
Amanda's Mom,
Sharon
This has been such a blessing to be able to stay here in this beautiful area where everything is near, no parkiing problems, no hills to climb. We will be having a small celebration this evening with Jon and Catherine, Amanda and myself either at a local restaurant (if she feels up to it) or take out! It won't be like her other martini toasting, music playing, club dancing birthdays from the past. But it will be one that we will toast her accomplishments in getting thru these many obstacles with fortitude and grace. We her parents are so proud of her and her continued courage.
Amanda is walking more, and getting fresh air. She still has trouble with too much stimuli, or able to focus on a computer, and she tires easily. But this will get better and better as the healing phase continues to progress.
We have a visit with her Doctors on Tuesday. She probably will get her stitches out, and we will learn how to take care of the next phase of her recouperation. If the prognosis is good, we will move to her apartment in San Francisco, California on Wednesday.
P.S. More Drama for the Lewis Family -- Ryan, our son, is living in San Diego where the fires are 20 miles AWAY. His business has shut down, and they are telling everyone to stay indoors because the air quality is so bad! Ryan is buying floaties in preparation for a water evacuation.
All for now, Love
Amanda's Mom,
Sharon
Wednesday, October 17, 2007
Amanda is out of the hospital!
The hospital is a 24 hour operation that at any time of the day or night, nurses and doctors are coming in poking, prodding, and making new assessments about your progress. This is the scenario that we became accustomed to living with every night. Suddenly, last evening, the neurosurgeon resident decided to take out the spinal tap and monitor Amanda closely to see if the leak was indeed closed.
Late today, and to our surprise, they decided to release her from the hospital. Staying in the hospital bed was only going to cause other problems in the long run. So they decided this was the best diagnosis. We were obviously elated to finally get outta there!
We are taking baby steps. We moved into a temporary home a mile from Stanford Medical Center (just in case something would happen in the next two days) and let her get a breath of fresh air, a new environment and monitor her progress, before we head home to San Francisco.
Her orders are to move very gently, no sudden head movements, or picking up anything that weights over five lbs., i.e do nothing that will endanger the leak from springing again. Just walking seems like a victory for her. And we are talking maybe ten minutes at a time, at a snails space. Her brain is trying to figure out what happened to the other side - and at times causes a great deal of havoc with loud internal sounds, headaches, and nausea when she moves in a certain way or has too much stimuli. This is what will take time, retraining her brain to accomodate the loss on the right side.
I know that her positive spirit is due to each of your kind thoughts and prayers, motivating emails and text messages. After all, we are all Ninjas!
Love, Amanda's Mom, Sharon
Late today, and to our surprise, they decided to release her from the hospital. Staying in the hospital bed was only going to cause other problems in the long run. So they decided this was the best diagnosis. We were obviously elated to finally get outta there!
We are taking baby steps. We moved into a temporary home a mile from Stanford Medical Center (just in case something would happen in the next two days) and let her get a breath of fresh air, a new environment and monitor her progress, before we head home to San Francisco.
Her orders are to move very gently, no sudden head movements, or picking up anything that weights over five lbs., i.e do nothing that will endanger the leak from springing again. Just walking seems like a victory for her. And we are talking maybe ten minutes at a time, at a snails space. Her brain is trying to figure out what happened to the other side - and at times causes a great deal of havoc with loud internal sounds, headaches, and nausea when she moves in a certain way or has too much stimuli. This is what will take time, retraining her brain to accomodate the loss on the right side.
I know that her positive spirit is due to each of your kind thoughts and prayers, motivating emails and text messages. After all, we are all Ninjas!
Love, Amanda's Mom, Sharon
Tuesday, October 16, 2007
October 16th - Tuesday - Update
Amanda is still in the hospital and her family is with her 24 hours a day. They are still monitoring the brain fluid leak.
The brain fluid leak, a known risk factor from the surgery, is something that happens to one in ten patients. It occurs possibly when the multiple layers of skin are sewn together after they extracted the tumor, or when they patched the hole in her skull, they didn't put enough in there and a leak occured. Whichever of those scenarios happened, the process is to follow the lumbar spinal tap procedure to keep the presssure down from one's own brain fluid and away from the leak so it can heal.
This is imperative so that infection does not set in, and not to go back into surgery to repair the leak.
On the bright side, Amanda has a lot to be thankful for: the entire tumor was removed so she doesn't have to go thru a radiation process and her face function is normal!! Thank you God.
They told us that there would be hills and valleys with respect to the progress of her recovery, we are now in the valley. She is determined to get thru this. Tomorrow is another day! Keep up your good thoughts, and prayers, as I believe this is keeping her strong.
Best wishes,
Sharon Lewis
The brain fluid leak, a known risk factor from the surgery, is something that happens to one in ten patients. It occurs possibly when the multiple layers of skin are sewn together after they extracted the tumor, or when they patched the hole in her skull, they didn't put enough in there and a leak occured. Whichever of those scenarios happened, the process is to follow the lumbar spinal tap procedure to keep the presssure down from one's own brain fluid and away from the leak so it can heal.
This is imperative so that infection does not set in, and not to go back into surgery to repair the leak.
On the bright side, Amanda has a lot to be thankful for: the entire tumor was removed so she doesn't have to go thru a radiation process and her face function is normal!! Thank you God.
They told us that there would be hills and valleys with respect to the progress of her recovery, we are now in the valley. She is determined to get thru this. Tomorrow is another day! Keep up your good thoughts, and prayers, as I believe this is keeping her strong.
Best wishes,
Sharon Lewis
Saturday, October 13, 2007
Cranial Spinal Leak - A Risk Factor
A CSL or Cranial Spinal Leak is one of the risk factors of her type of brain surgery, but with a low percentage of happening. What are the odds that Amanda would develop this problem ?
Today she was relocated to another floor - intensive neurosurgery - where she had a spinal tap performed. This is a procedure that inserts a tube in or near her spinal cord and empties the overflow of fluid from her brain thru this spinal cord into a device hanging off her bed. This was very difficult, as the needle inserted was larger than an epidural needle (those who have had children - know what I am talking about).
She is now confined to complete bed rest for three or more days. She is restricted with bed and head movement- no more than a 30 degree incline. If she wants to move, a nurse must come and remeasure every inch!!
She is determined to get thru this obstacle and get back on track with her recovery. We have decided that Amanda should play the lottery, as her odds in winning should be very good.
Best Regards, Sharon Lewis
P.S. Lets see how much we can stand! My husband's back just went out. He is now on the floor, as this is the only comfortable position.
Today she was relocated to another floor - intensive neurosurgery - where she had a spinal tap performed. This is a procedure that inserts a tube in or near her spinal cord and empties the overflow of fluid from her brain thru this spinal cord into a device hanging off her bed. This was very difficult, as the needle inserted was larger than an epidural needle (those who have had children - know what I am talking about).
She is now confined to complete bed rest for three or more days. She is restricted with bed and head movement- no more than a 30 degree incline. If she wants to move, a nurse must come and remeasure every inch!!
She is determined to get thru this obstacle and get back on track with her recovery. We have decided that Amanda should play the lottery, as her odds in winning should be very good.
Best Regards, Sharon Lewis
P.S. Lets see how much we can stand! My husband's back just went out. He is now on the floor, as this is the only comfortable position.
Hospital Progress
Amanda is steadily making progress in the hospital. As with any extensive surgery, she has had a few bumps in the road. She has developed a slight brain fluid leak (dripping from her nose) - this is something that they have to make sure is stopped before she can leave the hospital, and she has some breathing difficulties with her lower lungs not functioning properly. These are all being tested, monitored and medications applied.
Her pain and vertigo are under control with a super cocktail of drugs. She has stood up and is getting stronger.
They did a great job in saving her hair, only shaving off what was needed, which she was excited to hear about. She has not seen herself, (this has been deliberate,) as she would not really recognize herself, since she is very swollen and bruised.
A few people have asked if she can have visitors. She is not up to having visitors, as she could not carry on a conversation, and gets tired very easily. She also can't read, or look at her iphone yet to respond to the many messages she is receiving. Be patient, she will get back to all of you, in a couple of weeks.
All of your prayers, special messages, and acts of kindness are getting her thru this. As her parents, we are very happy she has such a wonderful support group.
P.S. I forgot to mention that her genuis doctors are amazing--Dr. Robert Jackler, MD - Chairman of the Brain, Neck and Ear Department of Stanford, was assisted by Dr Lawrence Harsch, Head of Neurology ( AND HUSBAND OF MEG WHITMAN, CEO of EBAY).
Tumor could show up on EBAY.............
Warmest Regards,
Sharon Lewis (Amanda's Mom)
Her pain and vertigo are under control with a super cocktail of drugs. She has stood up and is getting stronger.
They did a great job in saving her hair, only shaving off what was needed, which she was excited to hear about. She has not seen herself, (this has been deliberate,) as she would not really recognize herself, since she is very swollen and bruised.
A few people have asked if she can have visitors. She is not up to having visitors, as she could not carry on a conversation, and gets tired very easily. She also can't read, or look at her iphone yet to respond to the many messages she is receiving. Be patient, she will get back to all of you, in a couple of weeks.
All of your prayers, special messages, and acts of kindness are getting her thru this. As her parents, we are very happy she has such a wonderful support group.
P.S. I forgot to mention that her genuis doctors are amazing--Dr. Robert Jackler, MD - Chairman of the Brain, Neck and Ear Department of Stanford, was assisted by Dr Lawrence Harsch, Head of Neurology ( AND HUSBAND OF MEG WHITMAN, CEO of EBAY).
Tumor could show up on EBAY.............
Warmest Regards,
Sharon Lewis (Amanda's Mom)
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