William Wilson's life with Chiari.

William Wilson's life with Chiari. Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from William Wilson's life with Chiari., Olean, NY.

12/22/2022
Activities to avoid with Chiari...The subject no one wants to hear about, but chiari and syringomyelia are life-altering...
01/20/2021

Activities to avoid with Chiari...

The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:

NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.

NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)

NO contact sports.

NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)

NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.

NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.

NO moving around in the dark!

NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.

NO twisting your spine – try to keep a good posture with your spine lined up and straight.

NO bending over. lower yourself to the floor by bending your knees – not your back.

NO sudden spinal/neck movements.

NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.

NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.

AVOID sleeping in a head down position.

Avoid cervical traction.

Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.

AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.

AVOID food with too much salt.Especially for woman during their premenstrual period.

DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.

DON’T try to keep commitments when you’re feeling badly. Listen to your body.

Hi. You don't know me, but my name is Chiari. I am a malformation of the skull that forces a portion of your brain down ...
09/09/2020

Hi. You don't know me, but my name is Chiari. I am a malformation of the skull that forces a portion of your brain down into your neck, the cerebral tonsils to be exact. There is no cure for me and meds are all but useless most days. The only thing you can do about me is have a surgery called posterior fossa decompression where they remove a piece of your skull. Sometimes they even have to cauterize off part of your brain.
I cause a host of symptoms, some estimate them at over 100. My symptoms can range from mild and manageable to life altering and devastating. Pain is something I give freely, sometimes in interesting ways. I ravage not just your body but your mind. I care not if you're male or female, young nor old. In most every case I've been with you since birth, just no one knows to look for me. Others get blamed for all the misery I cause.
Most doctors know very little about me and dismiss me constantly. Leaving me free to wreak havoc on your life. Good luck finding one who knows me and will believe you. Many times, you'll be left to navigate me alone. I will challenge you and leave you desperate for help. Given the chance I will change your life for the worst, sometimes I'll take that life completely.
I don't always travel alone. There are often other conditions found along with me, like Ehlers Danlos, Postural Orthostatic Tachycardia Syndrome, Idiopathic Intracranial Hypertension, Hydrocephalus, Empty Sella Syndrome, and more. It's good to have friends, though I will happily make yours disappear. Friends tend to fall by the wayside with me around.
Again, my name is Chiari Malformation, some call me Arnold Chiari Malformation. And I'm here to ruin your life and riddle you with pain.


*Written by V.L. Tyler Sept 2017
A lot of people can relate to this 💜💜💜

That is how I feel everyday with my ACM. Even my Doctors don't understand. No one don't understand
08/24/2020

That is how I feel everyday with my ACM. Even my Doctors don't understand. No one don't understand

Truth
06/22/2020

Truth

This is very true. That is why Im in pain everyday
05/28/2020

This is very true. That is why Im in pain everyday

My scar from 15 years ago
01/27/2020

My scar from 15 years ago

01/21/2020

Activities to avoid with Chiari...

The subject no one wants to hear about, but chiari and syringomyelia are life-altering conditions and you WILL have to face that and change some major things in your life. You will find people with these conditions who continue to do some of these things, but they do so with the knowledge that it can severely alter their current condition for the worse. The following are just some of those No-No’s:

NO neck stressing activities, such as roller-coasters, 4-wheelers, skateboards, horseback riding, motorcycles, wave pools, backpacking, falling asleep in chairs, extended reading with head bent ect.. Anything that “jars” your head and/or spine is a definite no-no.

NO neck stressing sports, such as water skiing, snow skiing, snow boarding, sky diving, bungee jumping, diving, playing tennis, basketball, soccer, football ect (Just trying to cover all the basics – you get the idea.)

NO contact sports.

NO Chiropractor!- Especially at the neck for chiarians and for those with a syrinx, no deep tissue in the area of ur syrinx.(The chiro should be well versed on Both CM/SM)

NO straining which includes straining to reach something, or even straining during a bowel movement. Take a fiber supplement every day if you tend to get blocked up.

NO moving furniture or heavy objects around by pushing, pulling, lifting, or any other way. Pick up nothing heavier than a gallon of milk. I know – that sounds impossible, but keep that gallon of milk in the back of your mind.

NO moving around in the dark!

NO putting yourself into stressful situations or relationships. Try to relax, avoid noise and keep your neck muscles relaxed.

NO twisting your spine – try to keep a good posture with your spine lined up and straight.

NO bending over. lower yourself to the floor by bending your knees – not your back.

NO sudden spinal/neck movements.

NO using the hair wash sink at the hair salon.Instead ask for the special try that most hair salons have that are designed to accommodate people who are unable to bend their head/necks backward.

NO Lifting more than 15 lbs when strength training or backpacking.Heavy lifting is generally not recommended especially if you have a syrinx.

AVOID sleeping in a head down position.

Avoid cervical traction.

Avoid lumbar punctures, spinal taps or epidurals, unless it is a well informed chiari dr....if a LP is drawn too quick it can cause the tonsils to herniate even further.Done incorrectly, this can be very dangerous for a chiarian.

AVOID doing any kind of activity that causes you to bend your head backwards, such as: bending back to gargle, washing hair in the shower ect.

AVOID food with too much salt.Especially for woman during their premenstrual period.

DON'T participate in any physical activity that puts you in jeopardy of falling and or creating trauma of any kind.

DON’T try to keep commitments when you’re feeling badly. Listen to your body.

Just a video that I just did about Chiari.Click the video to watch it.
01/17/2020

Just a video that I just did about Chiari.
Click the video to watch it.

Just trying to get the word out for

Last couple days back of my head and neck is in pian. I been putting my head on a head rest. It seems to help a little. ...
12/14/2019

Last couple days back of my head and neck is in pian. I been putting my head on a head rest. It seems to help a little. In the picture of me sitting. About to get up so I won't baby the muscles

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Olean, NY
14760

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