Through our peer groups on Facebook, we sometimes get in touch with people with OI who have symptoms of the rare condition Basilar invagination (BI) without being aware of what it is and what they should do about it. Because there is so little awareness about this rare but serious complication, we would like to share our knowledge on it based on information from international experts on the topic.

What Is Basilar Invagination?

Basilar invagination is when the top of the spine pushes into the base of the skull. This causes pinching and pressing on the brain stem, the thick bundle of nerves that connects the brain to the spinal cord. Basilar invagination that is very mild is called basilar impression.

What Are the Signs & Symptoms of Basilar Invagination?

Basilar invagination can cause different symptoms depending on which part of the brain stem is pinched or pressed. Common symptoms include

• headache (usually pain in the back of the head or upper neck)
• neck weakness
• confusion
• trouble talking or swallowing
• feeling dizzy or lightheaded
• numbness or tingling in the hands or feet
• loss of proprioception (knowing the position of body parts without looking)
• the feeling of a shock down the back when the neck bends forward
• weakness or paralysis of the arms, legs, or both
• trouble going to the bathroom (peeing or pooping), or having pee or poop accidents

Symptoms can get worse when the neck bends forward.

What to do if you think you have it?

If you suffer from symptoms like these, you should seek medical advice. Because the awareness and knowledge about the condition is low, we do however recommend that you print and bring this article this article, which has been reviewed in 2019 by one of the experts on basilar invagination, dr. Suken A. Shah from Wilmington, Delaware, USA.

Dr. Suken Shah also gave a video lecture for the See Hear Smile-conference. You can watch the video through the link below.