The Realities of Living with Chiari Malformations (Chiari Awareness Month)

September is Chiari (pronounced kee-AH-ree) Malformation awareness month. Chiari Malformations are structural abnormalities of the cerebellum, the part of your brain that controls muscular movements such as coordination, posture, balance, and speech; as well as the spinal cord. Chiari Awareness Month aims to raise awareness about the chronic symptoms those with the conditions often experience. One commonly experienced symptom by those with Chiari Malformation is chronic, debilitating head and neck pain.  

September is Chiari (pronounced kee-AH-ree) Malformation awareness month. Chiari Malformations are structural abnormalities of the cerebellum, the part of your brain that controls muscular movements such as coordination, posture, balance, and speech; as well as the spinal cord.

Chiari Malformation is not very common, however, it is being diagnosed at a higher rate than previously due to the increasing use of modern imaging diagnostic tests. According to WebMD, Chiari Malformations are more likely to affect females than males. Due to some people never developing symptoms as a result of this condition, it is impossible to estimate exactly how many people have Chiari Malformation. 

Symptoms of Chiari Malformation

Some people with Chiari Malformations experience no symptoms, however, others may experience chronic symptoms including:

  • Weakness in muscles
  • Vison issues
  • Hearing problems (including tinnitus) 
  • Vomiting 
  • Headaches
  • Neck pain
  • Dizziness
  • Difficulty swallowing or speaking
  • Balance and coordination issues
  • Numbness
One commonly experienced symptom by those with Chiari Malformation is chronic, debilitating head and neck pain.

The symptoms can vary based on the type and severity of the Chiari Malformation. 

Types of Chiari Malformation

There are four types of Chiari Malformations:

Type I is the most common type found in children. This occurs when the cerebellum extends into the foramen magnum, which is the opening at the base of the skull. Normally only the spinal cord passes through this opening. Type I is the only type of Chiari Malformation that can be acquired after birth, however, it is also possible to be born with this type of Chiari Malformation. Type I can be acquired through injury, infection, or harmful substances, due to the resulting excessive draining of spinal fluid. However, this isn’t as common as congenital Type I Chiari Malformation, which occurs during fetal development. The causes of congenital Type I Chiari Malformations are not yet fully understood. 

Type II is normally only seen in children with spina bifida. Type II is known as the “classic” Chiari Malformation. Type II Chiari Malformation occurs when both the cerebellum and the brain stem extend into the foramen magnum. This is often diagnosed during pregnancy through ultrasounds, though it can also be diagnosed after birth in early infancy. 

Type III is the most serious type of Chiari Malformation, as it has a higher mortality rate. Type III is also a rare type. Type III Chiari Malformation occurs when some of the cerebellum and the brain stem stick out through an abnormal opening at the back of the skull. This type of Chiari Malformation can cause life-threatening complications, as well as possible neurological issues. Seizures can also occur with this type of Chiari Malformation.

Type IV occurs when the cerebellum is either underdeveloped or incomplete. Parts of the skull and spinal cord may also be visible. This is another rar

Type IV occurs when the cerebellum is either underdeveloped or incomplete. Parts of the skull and spinal cord may also be visible. This is another rare form of Chiari Malformation. 

Conditions associated with Chiari Malformations

Hydrocephalus is an excessive build-up of cerebrospinal fluid (CFS) in the brain. This can be caused by a Chiari Malformation blocking the normal flow of this fluid. This can cause pressure within the head that can lead to defects, including an enlarged or misshapen skull. If left untreated, this can become fatal. Hydrocephalus can occur with any type of Chiari Malformation, but most commonly occurs with Type II. 

Spina bifida is the incomplete closing of the bone and membranes surrounding the spinal cord. As said above, people with Chiari Malformation Type II usually have spina bifida.

Syringomyelia is when a cyst forms in the spinal cord’s central canal. This can cause pain, stiffness, and weakness in the neck, shoulders, back, and limbs. 

Tethered cord syndrome occurs when the spinal cord abnormally attaches itself to the tissue at the bottom of the spine. This condition is progressive, as it gets worse as the child grows. This condition can result in the damage to nerves that control the muscles in the lower body and legs.

Spinal curvature is common in people who have syringomyelia or Chiari Malformation Type I. If the spine bends either to the left or right, this is called scoliosis. If the spine bends forward, this is called kyphosis. 

Diagnostic tests and treatment

In the process of diagnosing Chiari Malformation, a doctor may order an MRI, CT scan, or X-ray. An MRI is the test that is used to diagnose Chiari Malformation most often. The doctor will also check things such as your motor skills, balance, and response to touch. This is because all of these functions are controlled by the spinal cord and the cerebellum. 

In the process of diagnosing Chiari Malformation, a doctor may order an MRI, CT scan, or X-ray. An MRI is the test that is used to diagnose Chiari Malformation most often.

If the Chiari Malformations cause no symptoms, then treatment may not be necessary. However, if pain is caused by this condition, it can be treated with pain medication. Surgery may be required to fix any functional abnormalities and prevent any progressive damage to the central nervous system. 

Spreading Awareness 

Whether it be during September or throughout the rest of the year, organisations such as Conquer Chiari encourage people impacted by Chiari Malformation to spread awareness however they can. Whether it be through something as simple as sharing awareness posts on Facebook, or through something a bit more complicated like wearing clothing and jewellery mentioning Chiari, hosting a fundraiser, or participating in annual Chiari Awareness Month events such as the Conquer Chiari Walk. 

Like with any other chronic illness, the spread of awareness and information regarding Chiari Malformations is incredibly important. Not only does this encourage understanding towards those who experience Chiari Malformations from those who don’t, but it also opens the doors towards new research regarding the causes and treatments of Chiari Malformation.

If you’re wanting to learn more about Chiari Malformations and the lives of those who experience it, you can visit websites such as the Mayo Clinic ( and Conquer Chiari ( 

About The Author

Amy Clements is a 20-year-old who has lived with chronic pain, the result of Fibromyalgia, since childhood. In her teens she was diagnosed with Complex Regional Pain Syndrome in her wrist, which was the result of a netball injury. Amy lives in New Zealand and studies Business part-time at University. She enjoys reading novels and writing. She especially enjoys writing about her experience with chronic illness.

The Tale of the Missing Ice Cream with The Chargimals: Chiarisaurus, Migrainopod, Depresosaur, Anxieton, and Misdiagnosaur

chargimals, chiari malformation, depression, anxiety, migraine, missed diagnosis

One bright and sunny afternoon Chiarisaurus, or Zippy, as his friends called him, and Migrainopod, Pod for short, went to the grocery store together. As they walked down the first isle Zippy started to feel really bad. His head started hurting and he got super dizzy. His vision started to get foggy and he told Pod he needed to sit down. Pod understood because sudden and severe headaches happened to Zippy a lot. So they sat down together right between the juice and water in the beverage isle. Pod didn’t care if it was socially unacceptable to sit down in the middle of a grocery store or not. He just wanted to make sure his friend was okay and do whatever he could to help.

chargimals, chiari malformation, migraine, anxiety, depression, missed diagnosis

Pod asked Zippy, “Is there anything I can do to make you feel better?”

“I would like some ice cream. That would help my head feel better.” Zippy said.

“You got it!” So Pod walked a few isles over to pick out a pint of ice cream, but there was no ice cream in the freezer. He walked around the whole store and saw that there was no ice cream anywhere. He went back over to Zippy and sat down beside him.

“There is no ice cream. It’s all gone.” Pod explained. “I don’t know what to do. What do you think?”

chargimals, depression, anxiety, migraine, chiari malformation, missed diagnosis

Zippy thought about it and said, “This sounds like a mystery that needs solving. But first I need a nap to help my head feel better.” So Pod helped Zippy up and they slowly walked out of the store eagerly chatting about who they could call to help them solve this mystery. On the way home Zippy said, “I think we should call Depresosaur. He’s always good in a crisis.”

“But when you play with D, Anxieton always has to come along. Sometimes she makes everything so scary and talks about all the things that could go wrong. She’s so anxious” Pod reminded Zippy.

“I know”, said Zippy, “and D is depressed but they are our friends and they’ll want to help us. What about Missy? Let’s call her too.”
“Missy can be so frustrating. She confuses me, but you’re right. We can definitely call her too.” Pod agreed. And they went home to rest and call their friends.

Once they got back home Zippy laid down to nap because his head still hurt. Meanwhile, Pod called D and explained to him the plan to solve the mystery of the missing ice cream.

“I don’t know, I’m so tired. I don’t want to get out of bed. You know we might not find the ice cream. I’m going to have to talk to Annie. I can’t do anything without her. If she wants to do it then maybe I’ll help. I’m just so depressed.” D complained.

“I know you are tired and sad, but Zippy really needs some ice cream. He has another bad Chiari headache and he said ice cream will make him feel better. Please help. It’s okay if Annie comes with you. We want her to help too.” Pleaded Pod.

After a brief minute, D conceded, “Oh, okay. I’ll get Annie and we’ll come right over to help. Anything for Zippy.”

chargimals, anxiety, depression, chiari malformation, migraines

Pod was so thankful that D and Annie were going to help find the ice cream for Zippy. He just wanted to help his friend feel better. He knows how bad Zippy’s Chiari headaches are and that not much can be done to relieve the pain and other symptoms they cause. If Zippy wanted ice cream then he was going to find that ice cream.

Pod decided to call Missy next. She was frustrating but he felt like she could help them if she would cooperate. “Yes, I’ll help. Wait, no I can’t. Something has come up. I don’t know. Maybe I can. I’m not sure.” Missy told Pod after he explained what was going on. Misdiagnosaur was always vague and no one ever quite new exactly what was going on with her.

“Missy, this is to help Zippy. Please come over and help us find the ice cream. We all just want to help him feel better.” Pod persisted.

“I can’t. I can’t tell you why either so don’t ask.” Missy finally said and that was the end of the conversation. It was all very confusing. It always was with Misdiagnosaur.

Pod shook his head and mumbled to himself about how Missy was so incredibly frustrating. Now he was even more confused but he had an idea. He went to talk to Zippy who was finally up from his nap.

“How are you feeling Zippy?” Pod asked.

“I feel a little better but I could really use some ice cream. Have you talked to anyone? Are they going to help us?”

“I did. D and Annie are on their way over now. Missy is being Missy, but I have an idea.” And with that the doorbell rang and it was Depresosaur and Anxieton.

All four Chargimals sat down and talked. Pod told them about his idea and they all agreed that the first thing they would do is go over to Missy’s and try talking to her again. Zippy was still not feeling very well but he gathered the strength to go along. He knew dealing with Missy would be hard, but he also knew he really wanted that ice cream and hoped they would be able to find it.

The Chargimals went to Missy’s and knocked on the door. When she opened the door she was holding a pint of ice cream in one hand and a spoon in the other and she clearly had ice cream in her mouth. She swallowed hard and looked at them knowing she was caught. Pod’s suspicions were confirmed. Misdiagnosaur took all the ice cream.

“Missy! Do you have all the ice cream?” Zippy asked.

“I don’t know. Maybe. No. I might. Perhaps I do.” Missy was so confusing. Of course she had the ice cream. She was standing there eating it!

“I have a Chiari headache, Missy. May I please have some ice cream so I can feel better?” Zippy asked politely even though he was really kind of mad at her for taking all the ice cream and not saying anything to Pod when he called her.

“I guess so. Come on in everyone. Let’s all have some ice cream.” Misdiagnosaur said and stepped back so they could all come inside.

chargimals, chiari malformation, depression, anxiety, migraine, missed diagnosis

The Chargimals sat down and all enjoyed some ice cream together. The mystery was solved and Zippy started to feel much better. He got his ice cream and he had great friends that would do everything they could to help him through the tough times he faced dealing with Chiari Malformation. He felt very lucky to have them and he couldn’t wait for their next adventure.

Rare Disease Spotlight Series: Chiari Malformation

As a new feature, we’re going to start a regular blog highlighting some of the rarer diseases in our community. For our first post, we’ll be talking about Chiari malformation.  By Monica Roberts

Chiari malformation is a condition in which the brain tissue (specifically the cerebellum) extends past the skull into the spinal area, resulting in compression of both the brain and the spinal cord. This also disrupts the regular flow of cerebrospinal fluid (CSF).


  Types of Chiari Malformation

Chiari malformation can be classified into three types, the latter two being congenital, or present at birth.

Type I develops as the skull and brain are growing, therefore symptoms may not occur until early adulthood.

Type II (sometimes called Arnold-Chiari) is usually noted by ultrasound during pregnancy, though it can be diagnosed after birth or in early infancy as well. This type is also closely related to Spina Bifida.

Type III is a rarer pediatric form, and is considered to be the most severe.


Spotlight Chiari Malformation



It’s possible to have a Chiari malformation without symptoms and often the condition is only detected when tests are performed for unrelated issues. In addition, since Chiari affects the nervous system, symptoms are widely varied across a range of possibilities.

There are some common symptoms, most notably severe headaches that can occur after sudden coughing, sneezing, or straining. Other symptoms connected to Chiari are neck pain, problems with balance and/or dizziness, vision and speech problems, and difficulty swallowing. Less often, people with Chiari experience more severe spinal-related symptoms such as scoliosis or have difficulties breathing.

Diagnosis and Treatment

The most common way to diagnose Chiari is through imaging, such as MRI and CT, or ultrasound in pediatric cases. Recently, however, with the definitions of Chiari malformations shifting, doctors are using a combination approach that includes reported symptoms and a neurological exam to aid in diagnosis.

Treatment for Chiari depends on the severity of the malformation. If there are no symptoms present, doctors typically recommend monitoring through regular exams. If symptoms are interfering with quality of life, worsening, or impairing the nervous system, doctors may recommend surgery. The most common surgery for Chiari is decompression surgery, but alternatives like shunting to channel the flow of CSF exist as well.


Spotlight Chiari Awareness


How do I know if I have Chiari? Is it genetic?

Though studies are ongoing, Chiari isn’t currently known to be solidly linked to genetics, which means there is no way to identify if the condition may be passed on within families. The current lack of study information also means there is no accurate way to estimate what percent of the population has a Chiari malformation.

*If you believe you may be experiencing the symptoms of Chiari, or any other neurological symptoms, we strongly recommend you visit your doctor.

For more information on this rare disease, visit

For more support:

If you’ve already been diagnosed with Chiari and are looking for more support, you are welcome to join the hundreds of other Chargies (our alternative term for Spoonies derived from the Battery Analogy) on our Facebook support group, The Unchargeables! We’re a community open to all chronic illness warriors including those with rare diseases and those who have yet to be diagnosed.

Also, check out our Chiari Malformation section in the shop for great gear to help you represent and raise awareness.

Spoonie Story: Heather

spoonie story heather2

My name is Heather, and I am currently 30 years old. I suffer from Chronic Pelvic Pain, some chronic bilateral knee pain, IBS-C (C for constipation), migraines, and worst of all, Chiari Malformation. My Chiari is not formally diagnosed yet, but the MRI evidence and symptoms are there.

spoonie story heather

My Chronic Pelvic Pain started when I was still 26 and still Active Duty Army. No cause was ever found, despite extensive work-up. My knee pain also started in the Army while I was 22. My right knee has a partial ACL tear, and my left knee has some early degenerative arthritis, but that didn’t start until 2 years later. My IBS and migraines started in my teens. My Chiari symptoms likely started in the summer of 2013 when I was around 28 (my birthday is in the middle of summer).

My migraines weren’t responding to Excedrin as well as they did before, but it wasn’t until after I was medically retired in early 2014 that I had imaging done on my brain and the cerebellar tonsillar ectopia was found. They haven’t diagnosed is as Chiari Malfomation because most medical providers still go strictly by the old measurement criteria. I finally got my doctor to put in a referral for me to see a specific specialist, so hopefully I can find better treatment options.

I still try to do what I can despite my symptoms, including fun things like attending a Like A Storm concert last night. I knew what to do ahead of time so that I could enjoy the whole night… and yes, I do have a jar with spoons in it on one of my necklaces there. I also made a small poster for the concert last night too. Didn’t hold it up, as it was a small venue, plus I don’t care for too much extra attention, but I did at least get my husband to take a pic of me holding it up before the show.

spoonie story heather2

Spoonie Story: Kelli

spoonie story kelli

Hello, I am Kelli Semkin, 42 yr old wife of an amazing man, and veteran. Mother of 3 gorgeous children and grandma of 2 girls and one yet to be determined.

spoonie story kelli

I was diagnosed with chiari in August of 2015, after several years of depression and anxiety and just knowing I felt that I had no energy and was just plain tired of fighting to get out of bed everyday. Of course Dr’s said it was depression and put me on meds that cause suicidal thoughts. I almost ended my life in 2014, thankfully my husband found me and saved my life.

I do not like having chiari but it does feel better knowing there is a reason for all of the pain and headaches I’ve had my whole life and that it’s not a character defect. I was decompressed in October and wish I never would’ve let them do the surgery, still have all of my symptoms plus fluid in the back of the head outside the dura. However, I feel I am stronger now because missouri Dr’s will not give pain meds so I have learned to get used to a level 9 daily pain scale….

I have my fellow spoonies and all of the wonderful people on the chiari sites to thank for giving good advice and information. Also could never have made it this far without my husband Justin Semkin and my children. I appreciate the daily words of inspiration or Information and of course the just plain silly memes that are put on the Spoonies For Life Facebook timeline. Thank for for letting me be part of the community.