Chiari malformation ?

Question

Hi I was diagnosed with this today and I don't know much about it ive looked online but it's not very informative.

Does anyone have this? 
Do they get headaches that are caused by sneezing coughing laughing bending over like a sharp stabbing tension pain? 
After you were diagnosed did you get any pain relief without surgery if you did have surgery what was this like?

Thank you to anyone who replies x

Answer

Hi there. I was looking for others with this condition and found your post. This is a scary diagnosis and very understudied. I have a Chiari and I also have Syringomyelia, which the Chiari caused.

I started having symptoms around age ten. Severe, stabbing headaches, blurry vision, no equilibrium, trouble hearing, cold sweats, no reaction to pain (other than the pain in my head), and shudders. Heat, laughing too hard, sprinting, coughing, lifting heavy things...that all made it worse but sometimes I had trouble seemingly without a cause.

After numerous tests and about eight years, I was finally correctly diagnosed. I had a decompression surgery shortly after that and it was super painful.

But, that pain went away and since the surgery, one of my spinal cysts has collapsed (yay! Praise God!) and the other has stopped growing. My symptoms have greatly diminished and no longer interfere with most daily life. I am monitored by MRI every year or so just to make sure things are still okay.

I am labeled high risk pregnancy and not supposed to actually go into labor, as that is a big strain and straining irritates the condition. My first child had an early screening for neural tube defects, such as mine, but there is no current research citing a definite genetic connection and my toddler is Chiari free.

I hope you have great care and I wish you all the best. If you have any questions, feel free to ask.

Answer

My sister was diagnosed at 16 had surgery the chiari had caused her spine to curve in an s shape . It can be very serious if left in treated she needed scoliosis surgery 6 months later the chiari caused blurred vision terrible headaches and many more complications . Surgery is painful worst head ache of your life but it is worth it. Recovery was fast and she is symptom free now. Sad part is it's actually more common then people think and most times when it's finally found it has caused issues .

Answer

Chiari Malformation Type 1. ✋️

Answer

My sister has this she was diagnosed last year with it. She has days where she won't even get out of bed.

Answer

I was diagnosed at 17 and had the surgery that July. 
Worst. Pain. Ever. Waking up, happy to report that I honestly forget I have it. I am now 24.

My co-worker also has it.

Answer

Omg I actually JUST saw this on Mystery Diagnosis. 
She ended up having neck surgery becaus part of her brain was bulging into her spinal cord putting pressure on it. She recovered quickly & is 100% now though!

Answer

I know this is exactly what the doctor said.. I'm 24 and I've had this headaches all my life but they've gradually got worse since my eldest was born 5 years ago. They are going to do another mri to check my spine but I'm hoping there's nothing major and it may not require surgery but I'd do anything to get the pain away. Thank you for replying and I'm glad your sister is much better now x

Chiari malformation ?

Let's Glow!

The Top Baby Tracker App: Embrace New Beginnings with Tender Care

The Top Fertility Tracker App: Your Path to Achieving Pregnancy

The Top Pregnancy App: Nurturing Your Journey to Motherhood

The Top Period Tracker for Empowering Your Menstrual Health Journey