Mother helps cure her 13-year-old son’s mystery illness by Internet research

by 1389 on March 7, 2015

in 1389 (blog admin), brain

Chiari malformation: I am 1389 a/k/a 1389AD, one of the admins of 1389 Blog, a brain surgery survivor, and this is also my story.

‘I put the pieces together’: Determined mom helps cure her 13-year-old son’s mystery illness by doggedly researching his symptoms on the internet

  • Bobby Leithauser, from Marco Island, Florida, started experiencing crippling stomach pain when he was only nine years old
  • As his mysterious condition worsened, he was put in a wheelchair, given a feeding tube and started experiencing vision loss in addition to his pain
  • His mom Keri’s research led the family to Dr. Harold Rekate, a neurosurgeon in New York who diagnosed the teen with a rare brain condition
  • Three months after surgery, Bobby is making a full recovery


Chiari malformations are caused by structural defects in the brain and spinal cord.

Symptoms include dizziness, muscle weakness, numbness, vision problems, headaches and problems with balance and coordination.

Chiari malformations mostly occur during fetal development, although they may develop later in life after injury, infection or exposure to toxic substances.

It was once believed that Chiari malformations occurred in only one in every 1,000 births, but research shows that they appear to be more common.

Babies who are born with Chiari malformations don’t develop symptoms until adolescence or adulthood – if they develop them at all.

Read it all here.

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{ 3 comments… read them below or add one }

1 1389 March 8, 2015 at 4:36 pm

I had Chiari decompression surgery over a decade ago. It involved taking out the back part of my skull and replacing it with a dura graft. Also they did something or other to my top vertebra to treat cervical stenosis. I had been losing the feeling and motor control in my arms and could no longer grasp and hold objects, probably as a result of syringomyelia. Also my heart rate and blood pressure were dropping rapidly and I also had non-obstructive sleep apnea (caused by brain stem not giving respiratory signals). In other words, my system was shutting down and I would most likely have died very soon.

The recovery was long and very difficult, and included a bout of meningitis. I spent a couple of months with scarcely any short-term memory. I had to carry a pen and pad of paper from room to room to figure out what I was doing. I took off from work for quite a long while and it was several months before I had enough stamina even to sit up for any length of time.

My memory still isn’t what it once was, and the same is true of my physical stamina. There is some permanent nerve damage and I still have problems with muscle cramping, sleep disturbances, and so forth. But I don’t get the constant headaches, nausea, etc. that I had before. I don’t have the coordination to do sports but I can walk, run, lift ordinary household objects, climb stairs, safely drive a car, cook meals, work for a living, and do other normal daily activities.

To memorize anything new, such as a presentation to be delivered at work, it takes me much more time and effort than it would for someone else, but at least it’s doable. I also don’t remember my distant past in much detail, but that may be because I haven’t had any reason to focus on it much.

I wasn’t diagnosed until I was in my 40s because the technology just wasn’t there. Normally, they do the Chiari decompression surgery on babies or toddlers, and generally they recover rapidly and do just fine. I posted this so that people who suffer from the symptoms (or have friends or relatives who do) will get themselves screened for this condition.

2 Gramfan March 9, 2015 at 7:13 pm

I didn’t know all that! Glad you are more or less ok 😉
Well,,you are to me!

Thankfully you are not like this moron:

3 1389 March 15, 2015 at 10:28 pm

@ Gramfan,

There are a lot of quacks out there!

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