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Hey. My name is Amanda. I just turned 30 years old, I have a sweet baby girl named Claire, a loving husband named Aaron; and I had a brain tumor.
I'm not the best writer, so please forgive me for that, but hopefully I can tell you my story.
January 3, 2014 - I was 8 months pregnant and started seeing some strange shadows in my field of vision. I called the doctor's office and they told me I needed to get to an emergency room immediately. After being in the emergency room for HOURS (on an uncomfortable labor and delivery bed); poked, prodded, and tested for everything the doctors could think of, we found out: I had low blood pressure (so that's good), I had no blood clots in my body so I wasn't getting a stroke or heart attack (so that's good), I didn't have a migraine (so that's good), my blood work seemed completely normal (so that's good), and my eyes seems perfect as ever (so that's good). Nothing to account for the strange shadows.... By this time, I was feeling like a hypochondriac and just wanted to get home. I was having no pain and the only symptom that I had was the strange shadow in my eye. Luckily I had a very persistent ER doc, and they decided to do one last test.... an MRI.
For any of you that have had an MRI, they aren't a particularly fun way to spend an hour, but they're usually not too bad. Now try doing it with a 7lb baby in your belly squishing all your internal organs.... I just wanted to get out of there! Unfortunately, the hospital I went to was pretty high tech, so they could see my face on a camera in the other room. Uncontrollable tears ran down my face as I tried so hard to stay still and deal with the pain in my belly. Luckily I was successful, and they didn't have to redo any of the films, and after 45 minutes, I returned to my L&D bed to await the results. The doctor came in surprisingly quick. She had a few stacks of papers to give us, and told me that they had found an abnormality, I had a Meningioma, but that there was nothing they could do about it while I was pregnant, so to follow up with a Neurologist as soon as I had the baby. Then she sent in the aide to help me get dressed and set us on our way...
To be honest, it was probably my own fault that we didn't get many answers about what a Meningioma is, what it does, where it is, etc. My goal in that moment was to get home and get into my comfy bed ASAP. During the drive home, it sunk in.... There is something in my brain! It doesn't belong! What is this thing?!?!? A quick Google search told me that it is the most common brain tumor found in humans. It is typically slow growing, but hormones caused by pregnancy make them grow rapidly.
I had my beautiful baby girl 2 weeks and 5 days later, and a few weeks later I got into the Neurologist. My particular tumor was in a pretty bad spot... where your nerves from the eye, ear, and facial muscles all come together. They call it the Trigeminal Nerve. My tumor was right on top of it, already took up all the space, and was putting pressure on the surrounding brain. If it got any bigger, I could lose my hearing, sight, or facial function on the right side of my head; or worse. Now, I'm not saying that hearing, sight, or facial function are a requirement for a good life, but I'm terrified to lose any of those! At 29 years old, with a brand new baby, and a new job, I didn't know how to deal with this. The Neurologist decided to have us wait for a year after having the baby so that all the pregnancy hormones would be gone, so we could have a look at what was happening to the tumor. The tumor appeared to be a little bit larger at that time, so we scheduled the surgery to get it out.
I had the surgery on March 9, 2015.
I had no idea what brain surgery meant. I had ataxia (loss of control of body movements on my right side). I had to re-learn to walk, to eat, to even balance.... to go upstairs, to lift my dang right foot while I walked.... I had to re-learn to write, to type, to text. My body was so frustrating to me! I could use my left side as well as I ever could (being a right-handed person), but my control over my right side was so difficult. I felt like my movements were similar to a little baby; I could make my arm move or my leg move, but I couldn't control how fast or how far they would go, and I had NO fine motor skills to speak of. I was in the hospital for a week and a neurological rehabilitation hospital after that. While I was there, I started to get pain in my lower back that caused extreme pain in my legs. The doctors kept saying it was muscle pain from not using my legs as much as I did before, but my physical therapist finally sent me back to the hospital. There had been a blood vessel leaking in my brain after the surgery. The blood had traveled down my spine and pooled in my lower back causing extreme nerve pain in my legs. Luckily the vessel had stopped leaking, but it took a few days of bedrest to get passed it.
Luckily I am a very stubborn person, and I came back to work only 4 weeks after my surgery. I only worked 2-3 hours a day for the first week, and I increased my hours each week until at 7 weeks I was back full-time. By the end of May/beginning of June (if I had my hair - of lack thereof - covered with a large cloth headband), I actually looked normal again! I worked so hard at practicing with my right side and improving those muscles, that I have very few setbacks or problems. If you saw me walking down the street now, 9 months later, you would never know.
That being said, I now have a literal mountain of medical debt. We owe roughly $11,000 in just medical bills right now. And the insurance company is claiming that the rehabilitation hospital that I went to was out-of-network and it's my fault for going there (even though I don't even remember that week and the social worker at the hospital sent me there).
My husband has had to stop going to school for now because we can't pay tuition, my student loans are in forbearance, and we have several medical collections calls daily... and we have about $11 in the bank account because we had to buy more diapers for the baby today.
Absolutely anything you can do to help would be so appreciated!! If you are struggling financially too, just share the story. Maybe we can help others fight those lame insurance companies!!! ;) I am extremely thankful to be healthy again, and to have all the wonderful blessings God has given me in my life!! Thanks for listening!! Merry Christmas!!
I'm not the best writer, so please forgive me for that, but hopefully I can tell you my story.
January 3, 2014 - I was 8 months pregnant and started seeing some strange shadows in my field of vision. I called the doctor's office and they told me I needed to get to an emergency room immediately. After being in the emergency room for HOURS (on an uncomfortable labor and delivery bed); poked, prodded, and tested for everything the doctors could think of, we found out: I had low blood pressure (so that's good), I had no blood clots in my body so I wasn't getting a stroke or heart attack (so that's good), I didn't have a migraine (so that's good), my blood work seemed completely normal (so that's good), and my eyes seems perfect as ever (so that's good). Nothing to account for the strange shadows.... By this time, I was feeling like a hypochondriac and just wanted to get home. I was having no pain and the only symptom that I had was the strange shadow in my eye. Luckily I had a very persistent ER doc, and they decided to do one last test.... an MRI.
For any of you that have had an MRI, they aren't a particularly fun way to spend an hour, but they're usually not too bad. Now try doing it with a 7lb baby in your belly squishing all your internal organs.... I just wanted to get out of there! Unfortunately, the hospital I went to was pretty high tech, so they could see my face on a camera in the other room. Uncontrollable tears ran down my face as I tried so hard to stay still and deal with the pain in my belly. Luckily I was successful, and they didn't have to redo any of the films, and after 45 minutes, I returned to my L&D bed to await the results. The doctor came in surprisingly quick. She had a few stacks of papers to give us, and told me that they had found an abnormality, I had a Meningioma, but that there was nothing they could do about it while I was pregnant, so to follow up with a Neurologist as soon as I had the baby. Then she sent in the aide to help me get dressed and set us on our way...
To be honest, it was probably my own fault that we didn't get many answers about what a Meningioma is, what it does, where it is, etc. My goal in that moment was to get home and get into my comfy bed ASAP. During the drive home, it sunk in.... There is something in my brain! It doesn't belong! What is this thing?!?!? A quick Google search told me that it is the most common brain tumor found in humans. It is typically slow growing, but hormones caused by pregnancy make them grow rapidly.
I had my beautiful baby girl 2 weeks and 5 days later, and a few weeks later I got into the Neurologist. My particular tumor was in a pretty bad spot... where your nerves from the eye, ear, and facial muscles all come together. They call it the Trigeminal Nerve. My tumor was right on top of it, already took up all the space, and was putting pressure on the surrounding brain. If it got any bigger, I could lose my hearing, sight, or facial function on the right side of my head; or worse. Now, I'm not saying that hearing, sight, or facial function are a requirement for a good life, but I'm terrified to lose any of those! At 29 years old, with a brand new baby, and a new job, I didn't know how to deal with this. The Neurologist decided to have us wait for a year after having the baby so that all the pregnancy hormones would be gone, so we could have a look at what was happening to the tumor. The tumor appeared to be a little bit larger at that time, so we scheduled the surgery to get it out.
I had the surgery on March 9, 2015.
I had no idea what brain surgery meant. I had ataxia (loss of control of body movements on my right side). I had to re-learn to walk, to eat, to even balance.... to go upstairs, to lift my dang right foot while I walked.... I had to re-learn to write, to type, to text. My body was so frustrating to me! I could use my left side as well as I ever could (being a right-handed person), but my control over my right side was so difficult. I felt like my movements were similar to a little baby; I could make my arm move or my leg move, but I couldn't control how fast or how far they would go, and I had NO fine motor skills to speak of. I was in the hospital for a week and a neurological rehabilitation hospital after that. While I was there, I started to get pain in my lower back that caused extreme pain in my legs. The doctors kept saying it was muscle pain from not using my legs as much as I did before, but my physical therapist finally sent me back to the hospital. There had been a blood vessel leaking in my brain after the surgery. The blood had traveled down my spine and pooled in my lower back causing extreme nerve pain in my legs. Luckily the vessel had stopped leaking, but it took a few days of bedrest to get passed it.
Luckily I am a very stubborn person, and I came back to work only 4 weeks after my surgery. I only worked 2-3 hours a day for the first week, and I increased my hours each week until at 7 weeks I was back full-time. By the end of May/beginning of June (if I had my hair - of lack thereof - covered with a large cloth headband), I actually looked normal again! I worked so hard at practicing with my right side and improving those muscles, that I have very few setbacks or problems. If you saw me walking down the street now, 9 months later, you would never know.
That being said, I now have a literal mountain of medical debt. We owe roughly $11,000 in just medical bills right now. And the insurance company is claiming that the rehabilitation hospital that I went to was out-of-network and it's my fault for going there (even though I don't even remember that week and the social worker at the hospital sent me there).
My husband has had to stop going to school for now because we can't pay tuition, my student loans are in forbearance, and we have several medical collections calls daily... and we have about $11 in the bank account because we had to buy more diapers for the baby today.
Absolutely anything you can do to help would be so appreciated!! If you are struggling financially too, just share the story. Maybe we can help others fight those lame insurance companies!!! ;) I am extremely thankful to be healthy again, and to have all the wonderful blessings God has given me in my life!! Thanks for listening!! Merry Christmas!!