Within the medical field, things are often dealt with from a statistical point of view. Doctors rely on what is "the norm" a lot. And let's face it, the "norm" is most of what doctors probably see, so you can't really fault them for assuming your case will also be "normal."
And then there's me.
I was one of those babies allergic to milk who needed a prescription formula. In the '70s.
I was born tongue-tied, but nobody noticed because I spoke fine... once I started talking. So, I'm still tongue-tied.
I was one of those kids who got molested by a family member.
I have bunions. On both feet. Since childhood.
I was a "late bloomer." In all the ways.
I was diagnosed with polyps in my sinus cavities at age 18 due to recurrent, severe headaches. I still have them because the small chance they could grow back after being removed is a reality I cannot ignore.
I've always known I was an outlier.... 😏
As if that's not enough ways to break out of the "norm" doctors like to compare me to, let's talk about my youngest child.
She was born with congenital hypothyroidism. Bet you didn't even know they test for that at birth these days, did you? Yeah, well, I know about that now. Because of her.
She also had colic. And reflux. At the same time. And she was allergic to dairy, soy, chocolate, and nuts. She outgrew nearly all of it, thank God.
This same child developed obstructive sleep apnea by 12 months of age. Her doctor said he'd never seen a child so young get diagnosed with OSA. She had her tonsils and adenoids removed at age 2.
As if that wasn't enough, her adenoids grew back, and she had to have them removed again at age 11. That surprised our ENT when he did an exam "just in case" to determine the cause of her newly diagnosed OSA, Second Edition.....
She was also highly reactive to vaccines. For a few years, I bought the line from the pediatrician that her reactions weren't really reactions, but by age 4, she had a terrifying reaction to vaccines and hasn't had any since.
So. We go to the doctor when we need to. You can probably imagine their reactions to our complaints, when we have them. And when they give me the line about how something isn't "typical" or "is highly unlikely," I want to slap them and say, "your numbers don't scare me."
You see, we are uncomfortably acquainted with being outliers. And once you've been the "one in a thousand" or whatever, you begin to understand that those numbers represent people. Those statistics are there to help us understand how much a particular disease or ailment or situation affects the general population. But they should never be used to dismiss someone's complaint when the symptoms line up or a problem exists.
I lived this in a very sense recently. For several years, I tried to tell doctors specific health issues I was having. I was given basic testing then told to take anti-anxiety medications because "everything was normal." I continued to have worsening symptoms, until one day, I was dragged to the ER - again - for heart attack symptoms - again - by my oldest daughter, who didn't like how I looked. (I had stopped going during an "attack" of symptoms because they always said everything was normal and asked me about my stress levels. I had become weary of doctors and nurses simply thinking I was crazy.) During that visit, though, the radiologist discovered that I had a physical abnormality in my body that caused something called Median Arcuate Ligament Syndrome (MALS). Once I researched this condition, I discovered that I had what would be considered classic symptoms of this condition. But no medical personnel had caught it. Not my PCP, holistic doctor, Gastroenterologist, cardiologist, ER doctors and nurses, or even previous CT scans and MRIs. Not even all the times I pointed to my abdomen and said, "it hurts here after I eat," which tends to be a very classic symptom of MALS. They just weren't familiar with this condition. (They are now!😉)
People with MALS are estimated to make up about 2% of the population. Research studies on patients with MALS are in the tens, not the hundreds or thousands. Some doctors don't even believe it is a real condition because of the overlap in symptoms to other (mostly non-treatable) conditions, and many medical schools teach it as something the doctors will "never see" in their practice. But here I am, living and breathing a controversial condition that doctors are free to debate ad nauseum - because they aren't the ones unable to eat or leave the house or exercise or feel normal.
I had my surgery to fix MALS last summer, and I am doing better than ever! The surgery is a moderate to high risk surgery, but my recovery has been ideal and my MALS symptoms are totally gone. I am a success story. But I am also a cautionary tale to patients and doctors who are faced with the symptoms of MALS (nausea, vomitting, abdominal pain, especially after eating, unintentional weight loss, etc.) with no other explanation. Maybe it's not "in your head." Maybe it's not anxiety. Maybe it's something you've never heard of. Numbers are just a part of the story, and somebody has to be the one in a hundred.....
[MALS is also called Celiac Artery Compression Syndrome and Dunbar Syndrome. For more information, visit https://my.clevelandclinic.org/health/diseases/16635-median-arcuate-ligament-syndrome-mals or https://rarediseases.info.nih.gov/diseases/12308/celiac-artery-compression-syndrome ]
And then there's me.
I was one of those babies allergic to milk who needed a prescription formula. In the '70s.
I was born tongue-tied, but nobody noticed because I spoke fine... once I started talking. So, I'm still tongue-tied.
I was one of those kids who got molested by a family member.
I have bunions. On both feet. Since childhood.
I was a "late bloomer." In all the ways.
I was diagnosed with polyps in my sinus cavities at age 18 due to recurrent, severe headaches. I still have them because the small chance they could grow back after being removed is a reality I cannot ignore.
I've always known I was an outlier.... 😏
As if that's not enough ways to break out of the "norm" doctors like to compare me to, let's talk about my youngest child.
She was born with congenital hypothyroidism. Bet you didn't even know they test for that at birth these days, did you? Yeah, well, I know about that now. Because of her.
She also had colic. And reflux. At the same time. And she was allergic to dairy, soy, chocolate, and nuts. She outgrew nearly all of it, thank God.
This same child developed obstructive sleep apnea by 12 months of age. Her doctor said he'd never seen a child so young get diagnosed with OSA. She had her tonsils and adenoids removed at age 2.
As if that wasn't enough, her adenoids grew back, and she had to have them removed again at age 11. That surprised our ENT when he did an exam "just in case" to determine the cause of her newly diagnosed OSA, Second Edition.....
She was also highly reactive to vaccines. For a few years, I bought the line from the pediatrician that her reactions weren't really reactions, but by age 4, she had a terrifying reaction to vaccines and hasn't had any since.
So. We go to the doctor when we need to. You can probably imagine their reactions to our complaints, when we have them. And when they give me the line about how something isn't "typical" or "is highly unlikely," I want to slap them and say, "your numbers don't scare me."
You see, we are uncomfortably acquainted with being outliers. And once you've been the "one in a thousand" or whatever, you begin to understand that those numbers represent people. Those statistics are there to help us understand how much a particular disease or ailment or situation affects the general population. But they should never be used to dismiss someone's complaint when the symptoms line up or a problem exists.
I lived this in a very sense recently. For several years, I tried to tell doctors specific health issues I was having. I was given basic testing then told to take anti-anxiety medications because "everything was normal." I continued to have worsening symptoms, until one day, I was dragged to the ER - again - for heart attack symptoms - again - by my oldest daughter, who didn't like how I looked. (I had stopped going during an "attack" of symptoms because they always said everything was normal and asked me about my stress levels. I had become weary of doctors and nurses simply thinking I was crazy.) During that visit, though, the radiologist discovered that I had a physical abnormality in my body that caused something called Median Arcuate Ligament Syndrome (MALS). Once I researched this condition, I discovered that I had what would be considered classic symptoms of this condition. But no medical personnel had caught it. Not my PCP, holistic doctor, Gastroenterologist, cardiologist, ER doctors and nurses, or even previous CT scans and MRIs. Not even all the times I pointed to my abdomen and said, "it hurts here after I eat," which tends to be a very classic symptom of MALS. They just weren't familiar with this condition. (They are now!😉)
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| Compression of Celiac Artery by Median Arcuate Ligament |
I had my surgery to fix MALS last summer, and I am doing better than ever! The surgery is a moderate to high risk surgery, but my recovery has been ideal and my MALS symptoms are totally gone. I am a success story. But I am also a cautionary tale to patients and doctors who are faced with the symptoms of MALS (nausea, vomitting, abdominal pain, especially after eating, unintentional weight loss, etc.) with no other explanation. Maybe it's not "in your head." Maybe it's not anxiety. Maybe it's something you've never heard of. Numbers are just a part of the story, and somebody has to be the one in a hundred.....
[MALS is also called Celiac Artery Compression Syndrome and Dunbar Syndrome. For more information, visit https://my.clevelandclinic.org/health/diseases/16635-median-arcuate-ligament-syndrome-mals or https://rarediseases.info.nih.gov/diseases/12308/celiac-artery-compression-syndrome ]
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