Establish Mindfulness: What Is Arnold Chiari Malformation?

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All of us has had a headache in our lifetime. It could be a signal of stress, lack of sleep, hunger, or other medical health conditions such as the Arnold Chiari Malformation. Some of us may be clueless of this condition as we don’t even know it existed. The symptoms could be mistaken for other medical conditions, and the only way to identify it accurately is by seeking a professional opinion.

What Is Arnold Chiari Malformation?

Arnold Chiari is a defect of the brain particularly the cerebellum. This part of the brain is responsible for our balance. Experts conclude that the pregnancy of the mother has a significant contribution in acquiring this defect. They believe that it could be due to the maternal diet lacking essential nutrients which are needed to form the brain. As a result, the indented space at the base of the skull is unnaturally small. The cerebellum then receives the pressure which blocks the normal flow of the cerebrospinal fluid.

What Is The Role Of Cerebellum In Arnold Chiari Malformation?

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The cerebellum can is easily identifiable in the brain because of its shape and location. It is responsible for our balance which then has a direct impact on how we function in our everyday lives. We all need to walk, and most of the activities we do require balance, and Arnold Chiari Malformation is a condition which hinders a person from functioning well and maintaining proper muscle coordination.

An Arnold Chiari malformation can be congenital, or it could also occur later in life. The symptoms are not noticeable until the age of 20 onwards. It can be a tricky condition as it only recognizable using diagnostic tests. Nonetheless, the signs that appear during adulthood are typical that we often see them as a common sickness.

There are three types of Arnold Chiari Malformation being Type I, Type II, and Type III. They could produce symptoms identifiable from the other.

What Is Arnold Chiari Malformation Type I?

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Headaches are the most common symptom of Chiari malformation. They happen when coughing, sneezing, or straining. There are also other symptoms of Type I Chiari malformation such as:

  • Poor hand coordination
  • Neck pain
  • Unsteady gait 
  • Numbness and tingling particularly the hands and feet
  • Dizziness
  • Difficulty swallowing
  • Vision problems
  • Speech problems
  • Ringing or buzzing in the ears
  • Weakness
  • Slow heart rhythm
  • Difficulty breathing

Working With My Syrinx And Chiari, I’m Not Giving Up

I was your regular healthy guy who was active, sporty, living a normal happy life with my family and fiancée.   It never occurred to my mom or me that I got this abnormality up inside my head. I didn’t feel anything strange growing up.  Not until the day when while on my way home from work, I felt dizzy that ends up like this throbbing pain in my head.

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Misdiagnosed As A Migraine

A headache can mean nothing serious or something serious.   It is a symptom caused by many factors from dehydration, hunger, stress, to brain injury.

 

My headache stayed for days to the point that it became unbearable.  I dropped by the Urgent Care Center nearby and had it checked. The attending physician tried to relieve the discomfort I was into, did some tests and questioning, and ensure me that it was nothing serious.  He gave me pills that I could take, list of things I should avoid, and asked me to keep track of the headaches. But at that moment, he suspected it was just some case of a simple migraine.

 

What In The World Are Chiari And Syrinx? 

While at work, I got this throbbing headache again, like I wanted to vomit.  Then, I started to feel numb all over. My officemates immediately noticed the change in my color.   I told them I feel like passing out and I did. That moment, they immediately called 911.

 

In the ER, they did an x-ray, CT scan, spinal tap, and MRI.  I could hear the attending doctor telling the nurse it could be a case of stroke.  I started to get worried. Hours later, the doctor came and she told me, it’s Chiari 1 Malformation.

According to Elyne N. Kahn, MD and collaborators, “Chiari I malformation (CM) is a common neurosurgical diagnosis and spinal cord syrinx is frequently found in patients with CM.”

What was that again?

 

Was My Brain Too Big Or My Skull Too Small?

The doctor got this picture of a brain and showed me how part of my brain was pushing out through the opening at the base of my skull, putting pressure on my brain stem and the spinal cord.  This is what causes the headaches, numbness, nausea, and my recent passing out spell.

 

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And There’s More, Syringomyelia

With another run of MRI, they found syrinx or a cyst that is filled with fluid in my spinal cord. “The fluid in these cysts is the same as normal cerebrospinal fluid (CSF),” Edward C. Benzel, M.D and co-authors wrote. “Syringomyelia really is the result of an abnormality in the circulation of CSF.” The doctor said that it might get big, could cause damage to my spinal cord, and give me difficulty in my daily living in the long term.  Since it was caused by protrusion of my brain tissue, they recommend that I undergo surgery.

 

Doctors Split Up My Skull

My life drastically changed overnight.  There were things I was not allowed to do.  I could not go to the gym, do strenuous exercises, and have night outs.  I was asked to slow down a bit so as not to put more pressure on my spine.  It is not the life I’m used to, and it’s kind of depressing.

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After weeks of deep thinking, I told myself, why not give it a go.  I let the doctor open up my skull, remove part of its base to enlarge the opening.   The goal of the surgery is to reduce the pressure on my brain and spinal cord and allow the normal flow of the spinal fluid.  The doctors are also hoping that it would resolve or improve the status of my syringomyelia.

“Neurologically symptomatic large syringomyelia cavities secondary to Chiari type I malformations should be treated surgically,” Akın Akakın, M.D. and co-authors suggest.”

Surgery Didn’t Work

Surgery was not always a success, something went wrong that decompression failed, so it has to be redone at another hospital.  The doctors succeed this second time. But with further monitoring, the surgery failed in restoring the normal flow of the cerebrospinal fluid, so the syrinx is still there.

 

It’s been months since my surgery.   The recovery is very slow, but the symptoms are improving.  I’m determined to get my life back, so I won’t give up on hoping even if it would mean another surgery.

 

Arnold Chiari Malformation, Diabetes Mellitus, And Vertigo: Which Is Which?

It is difficult to confirm whether you have Chiari malformation or not because its symptoms are common among many diseases such as diabetes and vertigo. The only way you can find out for sure is to consult your health care provider as you have to undergo some tests including MRI or a CT scan.

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Arnold Chiari malformation and vertigo are diseases affecting the brain while diabetes is a chronic disease affecting the whole body. These three should be dealt with caution since they are directly distressing balance and other essential functions for daily life.

 

What Are Arnold Chiari Malformation, Diabetes Mellitus, And Vertigo And Their Symptoms?

 

What Is Arnold Chiari Malformation?

 

Arnold Chiari Malformation is a structural abnormality of the brain particularly the cerebellum which controls coordination, balance, and motion. It is at the base of the skull, and in Chiari malformation, it extends into the spinal canal. It causes pressure on the brainstem and spinal cord, obstructing the flow of spinal fluid.

 

Symptoms Of Chiari Malformation I:

 

  • Headache 
  • Occipital headache (worsened pressure like coughing and sneezing)
  • Neck pain
  • Numbness of upper extremities
  • Weakness or Loss of strength in the extremities
  • Dizziness
  • Loss of balance
  • Vision problems
  • Hypersensitivity to bright lights
  • Sleep apnea

 

Signs and symptoms of Chiari Malformation I may not occur, but when they do, they can appear or manifest alone or along with the others. According to Ryan W Y Lee MD, “Chiari type 1 refers to herniation of the cerebellar tonsils alone, and radiologically as simple tonsillar herniation 5 mm or greater below the foramen magnum.”

 

Symptoms Of Chiari Malformation II:

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  • Involuntary downward eye movements
  • Weakness in the upper extremities
  • Breathing problem
  • Gag reflex problem

 

Signs and symptoms of Chiari Malformation II may come from issues related to myelomeningocele or hydrocephalus.

 

What Is Diabetes Mellitus?

 

Diabetes mellitus is a disease that affects the body’s ability to use the energy from food properly. It is when the pancreas is unable to produce enough insulin or none at all. It is a problem since insulin is a hormone that helps the body convert sugar to energy. “Early symptoms are related to hyperglycemia and include polydipsia, polyphagia, polyuria, and blurred vision,” Erika F. Brutsaert , MD notes.

 

Symptoms Of Diabetes Mellitus:

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  • Increased thirst
  • Increased hunger
  • Dry mouth
  • Urinary frequency
  • Weight loss
  • Weakness
  • Vision problems
  • Numbness or tingling in the extremities
  • Delayed healing of wounds
  • Dry skin 
  • Itchy skin 
  • Persistent yeast infections

 

What Is Vertigo?

 

Vertigo is the feeling of losing balance when standing up or walking. There is also the sensation that makes you feel like you or your surrounding is spinning. It can be from a problem in the ear where there is calcium formation in the canal of the inner ear called canaliths.

“Persons with Chiari may develop vertigo after spending some time with their head inclined on their trunk. Thus the Chiari can cause cervical vertigo,” Timothy C. Hain, MD wrote.

 

Symptoms Of Vertigo:

 

  • Ringing in the ears 
  • Spinning sensation
  • Tilting
  • Swaying sensation
  • Loss of balance
  • Pulled to one direction
  • Headache
  • Involuntary eye movements
  • Nausea
  • Vomiting
  • Sweating

 

Arnold Chiari malformation, diabetes mellitus, and vertigo have similar symptoms, and though they may appear to be simple, they will eventually affect how you function since they can cause loss of balance, weakness, and others which are hindrances to completing daily tasks.

 

Doing a self-treatment is a tremendous risk since early diagnosis is crucial in managing diseases. You need to consult a doctor right away to find out for sure, especially there are series of tests that need to be undertaken to rule out the other conditions. People are often scared to know the diagnosis, but they should be more afraid when they do not get the appropriate treatment early on because their situation could worsen.

 

It will help if you treat your body as an ally. It shows symptoms to ask you for help that it needs thorough attention. You must take care of it and get treatment for even a headache. Your feeling should always be great, and if you feel otherwise, going to the doctor is a treat that you shouldn’t be depriving yourself.

 

I Found Out I Have Chiari Malformation: Wait, What?

I am on my mid-30s, and as of this age, we are all expecting to have a little weirdness in our body. However, mine was a little too extreme for me. I came to the point where I suspect myself of dying from cancer. I thought of several diseases that could be causing the suffering I am feeling.

For over ten years, I was working as an executive secretary, working in front of a computer all day, doing all tasks and errands from the bosses. I was experiencing overwhelming stress, and I thought this contributed to the way I was feeling lately.

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For the past year, I was feeling weak, having headaches and vision problems which were understandable given the nature of my job. I went to see an ophthalmologist, and I had my first eyeglasses. He said my eye problem could probably be due to my exposure to radiation, looking all day in a monitor.

 

At first, the eyeglasses helped. I had fewer headaches than before, but eventually, my condition worsened. I had funny gait. My colleagues would often comment that I walk like a drunk person, and would often tease me, “It’s too early for a drink!”

 

There were times I had stuttering and neck pain, and I thought I was having a stroke. I looked up on the internet regarding my symptoms, and I suspected my condition to be diabetes or vertigo. It was tormenting not to know what exactly I was experiencing, but then, I was too much of a coward to find out. I was afraid that the doctor might say I only have a few months to live.

 

Then one day, the beginning of the revelation of my life happened. I was as usual busy at work when I decided to get some coffee because I was feeling sleepy and lazy. On my way to the pantry, I felt dizzy and lost my balance. It was a good thing the glass wall at my senior’s office caught me. I couldn’t stand up for a while, and one of my colleagues saw me sitting on the floor. She called for help, and I was rushed into the clinic. The nurse said I needed to see the doctor as soon as possible. My condition could be nothing, but it could also be something, so I better find out.

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The next day, I got a day off, and I went to see the doctor. I was hesitant, but I did it to free myself from the fear of knowing my condition. He reviewed my medical history and my symptoms. He also conducted a physical examination and requested that I get an MRI or magnetic resonance imaging. It is a test to diagnose Chiari malformation. It uses radio waves and magnets to resemble the body and creates 3-D images of physical oddities inside the brain that could mean an illness like the Chari malformation where the cerebellum extends into the spinal canal.

 

At last, the result came, and I was positive for Arnold Chiari malformation type 1. I mean, what? He said this type of condition could only manifest during late childhood or even adulthood which what happened to me. He also said that since my case was not severe, I will only be under medications and not a surgery where they need to eliminate a part of the bone at the back of the skull and to take away the pressure in the brain caused by the extension of tissues into the spinal canal.

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Having Chiari malformation made me incompetent in my job as I couldn’t move much like how I used to, and the simple task of getting documents from another department became a challenge for me. I realized that we should never ignore any symptom, that anything we experience outside of the normal is worth a visit to the doctor’s clinic. Now, I can sleep well, and all it took was a confirmation that I’m going to be okay.

Advice For Parents Of Kids Suffering From Arnold Chiari Malformation

My best friend’s daughter, Paula, was discovered to have Arnold Chiari Malformation when she was 5. This means that the back portion of her brain has been pulled down to the base of her skull and into her upper spinal canal. 

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According to Jeffrey W. Campbell, MD, “There are four different types of Chiari malformation (I, II, III, and IV). Chiari I is the most common. Doctors don’t know exactly what causes Chiari I malformation. A baby can be born with Chiari I malformation or it can develop in the first few years of life. Less often, the malformation can happen later in life from trauma, infection, or other medical problems.”

 

Some children who suffer from Arnold Chiari malformation do not present with symptoms, but others do have symptoms that are crucial to how they will live their lives. Paula presented with weakness in her legs and arms, numbness, sleep problems, balance and mood issues, gross and fine motor abnormalities, and developmental delay. However, these symptoms can be found in other conditions, which is why Paula was not diagnosed with Chiari earlier. And the fact was that she had the condition when she was only 18 months old. 

 

My friend confided in me then, her guilt of her frustrations with Paula. Paula wasn’t able to speak complete sentences when she was 3. Paula, too, was always sad and anxious. She didn’t want to see family members who would visit them. She would just play alone and her mood was erratic. 

 

Undergoing Decompression Surgery

Then came the miracle the family was waiting for – a neurosurgeon from Cincinnati Children’s Hospital evaluated Paula and recommended that she undergo decompression surgery, which leads to making more space to accommodate the brain and the spinal cord.

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We were all amazed with the result post surgery. The development was very fast and the improvement was quite evident in the way Paula moved, felt, and spoke. Her balance improved and she no longer felt the numbness in the hands and feet. The drooping of her eye was gone and the best part was, two weeks post surgery, she went back to school. It was an emotional moment for the family. She was speaking a few words, and then phrases and eventually sentences. 

 

Paula is now 13, a ninth grader. She is much better now, but my best friend is still pretty cautious. She’s just so thankful that they got through the ordeal and that Paula is living an almost normal life. 

 

However, Brad Weprin, MD, noted, “Surgery is most beneficial for individuals who have clearly defined problems related to Chiari. There are a lot of people around the country being operated on for Chiari who do not need to be, and they are now experiencing complications that could have been avoided.”

 

Timothy C. Hain, MD, advised, “As in most decisions, one should weigh risk vs benefit. In Chiari surgery, risk is substantial (your skull is opened). Benefit is minimal as Chiari’s, in general, do not progress rapidly if at all.”

 

Tips For Parents with Children Suffering From Arnold Chiari Malformation

 

Whether you’ve just heard about the sad news about your child or you’ve been dealing with it for some time now, do read below and learn some pieces of advice from my best friend’s experience, in the hopes that you, too, may help your child deal with his or her condition. 

 

  • Educate yourself about Chiari. Do your own research. Though your doctor would surely explain the condition to the family, there’s no harm in learning more about it by reading. It will also enable you to face your fear and be aware of the situation.

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  • Encourage your child to focus on what she can do instead of dwell on the things that she is unable to perform. Paula loves football but she can’t play, so we asked if she wanted to join the school ballet or golf team, and she did. 

Reach out to people who are in the same situation as you. You can connect to caregivers who have experience caring for Chiari children. Join a support group. It helps to hear from others and being able to share your stories to them as well.

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  • When you think about how life can be easier for you in dealing with the condition, please don’t forget to think about your child too. Ask her where she is more comfortable staying, or if she’s okay with some activities that you want her to do. I know you want what’s best for your child, but do give her ample freedom to decide on some things that give her comfort and security. 

 

  • Connect with your child’s friends and let them know your child’s limitations. Things like playing rough or doing vigorous activities are a no-no, so they should be aware of these. 

 

  • Spend time with your Chiari child as well as your other children without the condition. They’re children. Though they may get that their sibling has disabilities, it doesn’t mean you’ll let them understand you all the way. After all, it is your responsibility to take care of them, show them the same love, and treat them the best way you can.

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Takeaway

 

Your child may have different symptoms than the other children with Chiari. Don’t get depressed – it is a fact that every kid with the condition is different. Just open your mind. Stay positive – for you, your child, and your family.