The Diagnosis

Picture of Michaela

Michaela

I had no idea what to make of a spinal cord tumor. My neurologist said it wasn’t a big deal and that any neurosurgeon could get rid of it. I was vehemently opposed; I did not want just anyone operating on the nerves in my spine. Sometimes you have to trust your instincts and resist people’s attempts to persuade you that you are ignorant about the subject.

So I fought, I fought with great resistance to see the best. I fought the doctors and the insurance company, who all told me I was overreacting and that it wasn’t necessary. According to them, the best doctors would not treat me because my procedure was so routine. I fought to see the best neurosurgeon in Texas to remove my schwannoma, and I will never regret it.


 My procedure was not routine. I had extensive open spinal surgery in November of 2020. They had to remove three vertebrae to get to the tumor, then spent hours carefully untangling it from the nerves. They carefully reattached my vertebrae with pins after complete resection and closed me up. It was an eight-hour procedure. 

When I awoke, I had 48 hours to lie completely flat. I thought my stomach surgery pain was bad, but this was a whole new level of agony. Not only that but because the pandemic was still in full swing, I was not allowed any visitors. I was completely alone. 
I always try to keep a positive spin on things. Staying positive helps me power through. When I woke up from surgery my eyesight had corrected itself, the strength on my right side had returned and I did not have constant migraines. I was so grateful, I just had to follow the path of recovery. 

I was in the hospital for a week. I slowly began sitting up again, each step of recovery was painful.


There was a great deal of physical and emotional struggle.


I had to endure an eight-hour car ride home this time. Every single bump was felt. I had a long recovery ahead of me once I returned home. For nearly a month, I was unable to shower on my own. I was weak, in excruciating pain, but trying to be strong. 

Two little girls were watching my every move. I needed to prove to two girls that I could get through anything. I was anything but courageous behind closed doors. I was struggling with the realization that this would almost certainly not be the last tumor. What did this mean for my family, my career, and my hopes and dreams? 


I was struggling in every way possible. 

After my pathology confirmed that it was in fact a schwannoma,
my neurosurgeon referred me to a geneticist to see if I had schwannomatosis. After a series of questions and tests, I was diagnosed with schwannomatosis. After years of unknown pain and symptoms, I finally had an answer. 
The neurofibromatosis condition schwannomatosis renders your body incapable of stopping the development of schwannoma tumors. Schwannomas can grow in the sheath around a nerve anywhere in the body. The major symptom is nerve pain, and because the tumors develop on the nerves, they can produce odd sensations all over your body, making them hard to locate.

Having an answer was a great relief.  There was something wrong with me; I wasn’t crazy. However, that answer did not come with a solution. There is no medication or cure to stop the growth of tumors. The sole options for treatment are surgical removal of the tumor or managing the symptoms it is producing.


Stay Strong,

Michaela

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Picture of Michaela

Michaela

I had no idea what to make of a spinal cord tumor. My neurologist said it wasn’t a big deal and that any neurosurgeon could get rid of it. I was vehemently opposed; I did not want just anyone operating on the nerves in my spine. Sometimes you have to trust your instincts and resist people’s attempts to persuade you that you are ignorant about the subject.

So I fought, I fought with great resistance to see the best. I fought the doctors and the insurance company, who all told me I was overreacting and that it wasn’t necessary. According to them, the best doctors would not treat me because my procedure was so routine. I fought to see the best neurosurgeon in Texas to remove my schwannoma, and I will never regret it.


 My procedure was not routine. I had extensive open spinal surgery in November of 2020. They had to remove three vertebrae to get to the tumor, then spent hours carefully untangling it from the nerves. They carefully reattached my vertebrae with pins after complete resection and closed me up. It was an eight-hour procedure. 

When I awoke, I had 48 hours to lie completely flat. I thought my stomach surgery pain was bad, but this was a whole new level of agony. Not only that but because the pandemic was still in full swing, I was not allowed any visitors. I was completely alone. 
I always try to keep a positive spin on things. Staying positive helps me power through. When I woke up from surgery my eyesight had corrected itself, the strength on my right side had returned and I did not have constant migraines. I was so grateful, I just had to follow the path of recovery. 

I was in the hospital for a week. I slowly began sitting up again, each step of recovery was painful.


There was a great deal of physical and emotional struggle.


I had to endure an eight-hour car ride home this time. Every single bump was felt. I had a long recovery ahead of me once I returned home. For nearly a month, I was unable to shower on my own. I was weak, in excruciating pain, but trying to be strong. 

Two little girls were watching my every move. I needed to prove to two girls that I could get through anything. I was anything but courageous behind closed doors. I was struggling with the realization that this would almost certainly not be the last tumor. What did this mean for my family, my career, and my hopes and dreams? 


I was struggling in every way possible. 

After my pathology confirmed that it was in fact a schwannoma,
my neurosurgeon referred me to a geneticist to see if I had schwannomatosis. After a series of questions and tests, I was diagnosed with schwannomatosis. After years of unknown pain and symptoms, I finally had an answer. 
The neurofibromatosis condition schwannomatosis renders your body incapable of stopping the development of schwannoma tumors. Schwannomas can grow in the sheath around a nerve anywhere in the body. The major symptom is nerve pain, and because the tumors develop on the nerves, they can produce odd sensations all over your body, making them hard to locate.

Having an answer was a great relief.  There was something wrong with me; I wasn’t crazy. However, that answer did not come with a solution. There is no medication or cure to stop the growth of tumors. The sole options for treatment are surgical removal of the tumor or managing the symptoms it is producing.


Stay Strong,

Michaela

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I had no idea what to make of a spinal cord tumor. My neurologist said it wasn’t a big deal and that any neurosurgeon could get rid of it. I was vehemently opposed; I did not want just anyone operating on the nerves in my spine. Sometimes you have to trust your instincts and resist people’s attempts to persuade you that you are ignorant about the subject.

So I fought, I fought with great resistance to see the best. I fought the doctors and the insurance company, who all told me I was overreacting and that it wasn’t necessary. According to them, the best doctors would not treat me because my procedure was so routine. I fought to see the best neurosurgeon in Texas to remove my schwannoma, and I will never regret it.


 My procedure was not routine. I had extensive open spinal surgery in November of 2020. They had to remove three vertebrae to get to the tumor, then spent hours carefully untangling it from the nerves. They carefully reattached my vertebrae with pins after complete resection and closed me up. It was an eight-hour procedure. 

When I awoke, I had 48 hours to lie completely flat. I thought my stomach surgery pain was bad, but this was a whole new level of agony. Not only that but because the pandemic was still in full swing, I was not allowed any visitors. I was completely alone. 
I always try to keep a positive spin on things. Staying positive helps me power through. When I woke up from surgery my eyesight had corrected itself, the strength on my right side had returned and I did not have constant migraines. I was so grateful, I just had to follow the path of recovery. 

I was in the hospital for a week. I slowly began sitting up again, each step of recovery was painful.


There was a great deal of physical and emotional struggle.


I had to endure an eight-hour car ride home this time. Every single bump was felt. I had a long recovery ahead of me once I returned home. For nearly a month, I was unable to shower on my own. I was weak, in excruciating pain, but trying to be strong. 

Two little girls were watching my every move. I needed to prove to two girls that I could get through anything. I was anything but courageous behind closed doors. I was struggling with the realization that this would almost certainly not be the last tumor. What did this mean for my family, my career, and my hopes and dreams? 


I was struggling in every way possible. 

After my pathology confirmed that it was in fact a schwannoma,
my neurosurgeon referred me to a geneticist to see if I had schwannomatosis. After a series of questions and tests, I was diagnosed with schwannomatosis. After years of unknown pain and symptoms, I finally had an answer. 
The neurofibromatosis condition schwannomatosis renders your body incapable of stopping the development of schwannoma tumors. Schwannomas can grow in the sheath around a nerve anywhere in the body. The major symptom is nerve pain, and because the tumors develop on the nerves, they can produce odd sensations all over your body, making them hard to locate.

Having an answer was a great relief.  There was something wrong with me; I wasn’t crazy. However, that answer did not come with a solution. There is no medication or cure to stop the growth of tumors. The sole options for treatment are surgical removal of the tumor or managing the symptoms it is producing.


Stay Strong,

Michaela

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