my brain malformation and fat shaming

Katrina writes:

As cheesy and cliche as it sounds, on June 25th, 2012 my entire world was turned upside down. I was diagnosed with Arnold Chiari Malformation, Type 1. Before my diagnosis, I was working five days a week, I had only fifteen credits left to obtain my Associates Degree, I was volunteering at a drug and alcohol rehabilitation center for women, I spent time all my free time working on my doula-lactation-childbirth education business, and I was enjoying being a newlywed. And then it was all gone.

The afternoon of June 21st I left work early with a blinding headache. My vision kept wavering on and off and I thought I was going to faint every time I stood up. My heart was pounding and it wouldn’t stop. I considered going to the hospital but, unwisely, I decided it was only a migraine. The next morning, feeling a little better, I tried driving to work. I looked up at the traffic lights and was startled to see two overlapping lights. My vision had suddenly doubled overnight.

I detoured to the urgent care and that was the beginning of the end of life as I knew it. The testing, the poking, the prodding began. The diagnosis of Arnold Chiari Malformation Type 1. A firm doctor taking away my work and driving privileges until we could get this sorted out. Seeing specialist after specialist, all of them unable or unwilling to take me on as a patient, some of them admit they don’t want to help me because of my weight.

It’s now been a year since my diagnosis. What I thought would happen – a neurosurgeon reviewing my case, scheduling my decompression surgery, and a few months of healing – has definitely not happened. My husband and I are facing the reality that I am going to be sick for a long time. Right now we are trying to save money to see a specialist in Colorado. I’ve been trapped in my home, my symptoms worsening every week, slowly watching my dreams crumble around me. Doctors see only “FAT WOMAN” and not “patient in need of help.” Every single doctor I’ve seen has either blamed my symptoms on my weight, suggested gastric bypass, or doubted me when I say for the millionth time, “No, I do not have diabetes.”

A little about Arnold Chiari Malformation: in this kind of malformation, the brain is too big for the skull. The brain squeezes through the hole in the bottom of your skull where the spinal column comes through (the foramen magnum). This causes cerebrospinal fluid to backup and put pressure on your brain and nerves. Fat has nothing to do with it. At all.

Some of the symptoms are:
-Headaches that are made worse by coughing, yawning, sneezing, laughing, etc.
-Tinnitus
-Dizziness
-Nausea
-Muscle weakness and pain
-Sleep apnea
-Impaired coordination
-Dysautonomia
-Numbness
-Vision problems
-Depression
-Anxiety

There is no cure for Arnold Chiari Malformation. You can treat the symptoms or have decompression surgery (a surgery where they remove part of your skull and sometimes part of your spine, brain, or the dura surrounding the brain). I am being denied treatment because of my weight. I want more than anything to get better and get back to doing what I love. I haven’t found a doctor yet who wants the same thing.

I have a video about my experience here: http://youtu.be/HLBzLMzxfKs
My story is also here: http://www.gofundme.com/39hoes

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4 Comments

  1. Oh my gosh, that sounds awful. (The condition itself, even without the other doctors being totally non-helpful jerks. Though that is awful too.)

    They even wanted to blame it all on your fatness even when you already had a diagnosis of Arnold Chiari Malformation? Did they just ignore that?

    Reply
  2. onceuponaurora

     /  September 1, 2013

    Reblogged this on Sly Fawkes and commented:
    I am aghast–I am beyond aghast–that these so called medical professionals would deny treatment for this serious condition because they are prejudiced against a person’s body type. A person with this condition could lose all the weight in the world and there isn’t even a remote chance that the condition would be resolved.
    The “war on obesity” is making things worse and worse. It has to stop, but it will never stop unless people SPEAK UP and make it clear that this kind of treatment is intolerable.
    I so hope you find a doctor who will see you as a person and not a number on a BMI chart. This discrimination is unforgivable. Best wishes to you.

    Reply
  3. No one

     /  September 4, 2013

    I’m so sorry you’re going through this. I have Chiari type 1 and unfortunately it’s common for us to be ignored, marginalized and just generally be made to feel like we’re out of our minds, regardless of our size. I was diagnosed 15 years ago (I was 16), but last year when the symptoms finally got to be too much it was a battle to find a surgeon to decompress an overweight CM patient. I saw 3 neurosurgeons and 2 of them insisted all of my problems would be solved if I just lost weight. Because obviously my brain would go back to normal size if only I wasn’t fat.

    My point is this – you’re not alone. The Chiari community is small but very tight knit. Most of your doctors will be assholes, surgery is hell and your life will generally suck for awhile, but there are tons of forums and other online resources at your disposal. Join Ben’s Friends or the other groups if you haven’t already and we’ll all commiserate when you’re hating life and help you celebrate the victories. It’s helped get me through. Things will get easier a little at a time. Hang in there.

    Reply
  4. Research. Indicates decompression surgery is very often not effective if a patient is obese. Maybe that has something to do with the neurosurgeon not wanting to do the procedure. What would be the point if it is unlikely to help you?

    Reply

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