So what is wrong with me?

Hello,

Today I am going to be addressing what exactly is wrong with me. It can be confusing and not everyone is always understanding of Chiari and other medical conditions/disabilities. One of the main issues with Chiari is that it is what is called an invisible disability. In other words not all of it's symptoms can be seen; such as nerve pain. So no one can really know how a person with Chiari is feeling but that person. Personally my dog (pictured on my profile) always tend to know how I am feeling and can even catch me when I pass out. Be warned if I am having a bad day and you are not my wife and kids or close family member she will not let you inside the house if no one else is home.

So what exactly is Chiari? Chiari is more technically called Arnold Chiari Malformation. It is a deformity of the brain in which the cerebellum (usually just the cerebral tonsils) grown down into the spinal column of the neck. Some correction can be done with brain/neck surgery. For this surgery they shave the vertebrae in the back of the neck down to practically nothing and "bungee" the tonsils to the back of the skull. This surgery has a 75% success rate, with a 25% of symptoms return during some point in the person's life. 10% of the 25% fail rate there is no visible reason for symptom return and symptom progression. After seeing several doctors across the state and in contact with both doctors and other people with Chiari via e-mail it has been concluded I am within the rare 10% of the 25%. With that said, one doctor I did see comment on that my cerebellum is somewhat enlarged, not just my tonsils, this can cause pressure to be put on the brain and brain stem.

Okay so now I am going go over symptoms that I have been dealing with off and on the pass few years. Overall there are 100's of symptoms associated with Chiari and someone who has Chiari can have any of these symptoms at anytime, in any combination. I am going to list the symptoms I have personally dealt with. I do not always deal with all of these symptoms at once, sometimes only a few, other times quite a bit at once.

Symptoms

Coordination/Dexterity Issues
Chronic Migraines/Head Pressure Pain
Neck Pain
Light Sensitivity which can lead to painful blindness
Ringing in ears
Loss of hearing
Dizziness (pretty constant just worse at times than others)
Chronic Fatigue/Extreme Lack of Energy
Hyperactive Insomnia
Nerve Pain (described as pins and needles pain but extremely worse than when a limb falls a sleep)
Paralysis (sometimes from waist down, from neck down from time to time)
Stiffness
Muscle Weakness
Balance Issues
Loss of sense of taste
Word Retrieval/Word Confusion Issues
Memory Loss/Confusion
Mood Swings
Depression
Loss of Speech (most likely vocal cord paralysis)
Echolalia (bad stutter in which brain sends signals to say a word or sound repeatedly)
Cardiac Events (brain tells my heart to do dumb things that feel/look like heart attacks)
Facial pain/facial sagging at random
Fainting
Drop Attacks (similar to fainting but I am awake and aware of what is going on)
Seizures
Muscle Spasms
Shakiness
Stomach Spasms/Nausea
Blurry Vision
Lack of Sensation (mostly in hands but can be other areas)

 Other Conditions

 On top of having Chiari I do have other medical conditions as well. First to mention is scoliosis. My spine contains two curves, one in the upper spine and one in the lower spine. These curves may of been caused by my Chiari Malformation, through muscle spasms occurring while I was growing/developing . These spasms can cause the spine to slightly shift out of position a little at a time until maturity is reached. My scoliosis is at a phase in which it should be operated on but any form of operation would be extremely risky due to my brain deformity. The scoliosis surgery would involve fusing metal rods/plate up and down my spine in a Wolverine fashion so to speak. There is always a risk of permanent paralysis with this surgery. This risk is increased with people with Chiari due to the brain growing into the spinal column. The scoliosis does cause me lower back pain quite a bit but I have learned to deal with it as I have had lower back pain since Jr. High.

I also have a heart condition in which one of my heart valves opens up backwards. This causes some chest pain from time to time. More so it causes an irregular heart beat. My heart can slow down and then speed up. Once I was diagnosed with Chiari I learned that this heart condition was common with a flexibility mutation common in people that have Chiari. The mutation is called Ehlers-Danlos syndrome. Basically the person have extreme flexibility due to how the muscles are put together. Since I have been able to put both legs behind my head and at one time could bring my leg fully vertical parallel with my face since Jr. High it is likely I have the muscle mutation as well, though I have not been officially tested due to it being a mutation with no treatment.

The final medical condition I have is asthma due to premature birth. My asthma has recently gotten worse and now I am on a COPD medication as well as Symbicort twice a day. The breathing issues may be Chiari/brain related due to my brain can tell parts of my body to do rare/unusual things.

So yea, that is all that is wrong with me. Tomorrow or in a few days I will do another post on how I personally deal with the symptoms.

Thanks for reading

Dustin