As mentioned in my previous post, I was brought to a clinic where they referred me to an ENT specialist... the onset of a major dizzy spell shouted "Inner Ear!" Too bad my brain couldn't shout back "Think again!" So off I went to see the specialist. I spent many days doing one test or another. I even got to wear a beautifully ugly helmet and matching goggles to watch a light go up, down and around a wall! The weirdest test I had was getting warm and cold water flushed into my ears. If a Dr ever suggests this test, I suggest asking for the cold water first. It caused quite a bit of pain, but the warm water felt like a massage to my ear drums.
After feeling like I was living in the crooked kitchen of the Science Museum for a month, all the tests came back negative. I was told it was most likely stress from my job. I believed the Drs as I had only been at my job for 4 months or so, I started right after graduating from college, and I was going through some quite overwhelming training. (I was learning international rules and regulations in terms of air travel) So back to work I went, without being any further ahead. I wasn't told to follow up with anyone or given any counselling as to how to help myself get better.
Wednesday, November 17, 2010
As the years go by
In high school, I would get headaches and my knees would give out. After going to a sports clinic to have my knees looked at, I was told I had Patellofemoral Syndrome. Basically, it is when the knee cap does not move properly when you walk. This was from the same Dr who told me nothing was wrong with my hips, yet I was diagnosed with Bursitis???
When I was 18/19 years old, once in a while I would get a shake in my right hand when I would try to take a drink. I put it down to unhealthy living as I was living on my own, working 2 jobs and going out partying. I didnt always eat well or sleep much. To me, that was the logical answer. At 22, I would get bad veritgo in stairwells, especially the ones where you can see between the stairs... I started asking others I worked with if they too experienced this, and they did. I continued getting severe headaches. When Neal & I started dating, I felt so bad for him. I would page him in the middle of the night & begged him to talk me to sleep or tell me it was ok to go to the hospital.. I would take 2 Tylenol 3s and listen to his voice until the sun was almost up.
Let's fast forward....
October 2007, I was sitting at my desk when I suddenly got very dizzy. My eyes played tricks on me as it looked like my computer screen fell over & the stood right again with the blink of my eye. "What the?? What just happened??" Thankfully a friend who sat beside me noticed my reaction and asked if I was ok. She had a supervisor take me to a clinic nearby and this began the long journey of searching for an answer....
When I was 18/19 years old, once in a while I would get a shake in my right hand when I would try to take a drink. I put it down to unhealthy living as I was living on my own, working 2 jobs and going out partying. I didnt always eat well or sleep much. To me, that was the logical answer. At 22, I would get bad veritgo in stairwells, especially the ones where you can see between the stairs... I started asking others I worked with if they too experienced this, and they did. I continued getting severe headaches. When Neal & I started dating, I felt so bad for him. I would page him in the middle of the night & begged him to talk me to sleep or tell me it was ok to go to the hospital.. I would take 2 Tylenol 3s and listen to his voice until the sun was almost up.
Let's fast forward....
October 2007, I was sitting at my desk when I suddenly got very dizzy. My eyes played tricks on me as it looked like my computer screen fell over & the stood right again with the blink of my eye. "What the?? What just happened??" Thankfully a friend who sat beside me noticed my reaction and asked if I was ok. She had a supervisor take me to a clinic nearby and this began the long journey of searching for an answer....
Saturday, November 13, 2010
It all began 30 years ago
On August 31st, 1980 a little girl was born 13 weeks early, weighing 2 lbs 2 oz. Being so premature and having such under developed organs, she was placed in an incubator and monitored around the clock. The nurses were forced to restrain her as she would rip the monitors off her little body. she would continually stop breathing and had various complications. Fighting the restraints, she lifted herself off the little mattress so many times, she caused herself a double hernia. They had to operate. She was also given a higher oxygen level than normal, which could causeblindness. Being born so prematurely had many risk factors. However, no one and nothing was going to stop her from surviving, even if she weighed only 1 lb 7oz at one point and her tiny lungs kept giving out.
Oct 31st, her mother arrived at the hospital to visit her, only to be told something bad had happened. Her mother thought she had died, but fortunately that was not the case. The nurse had dropped the baby girl on her head fracturing her tiny skull. Her mother wondered what new complications could arise from this. She already knew there was a great chance of sicknesses, infections, blindness and mental challenges for her daughters future.
At 4 months old, the baby girl had gained enough weight to finally go home. Instead of her birth being her mothers birthday present, as she was due to be born Dec 9th and her mothers birthday is Dec 7th, her final release from the hospital was. While being home did not mean the complications and health risks were gone, it meant a family could finally be together as one. With the aide of her own parents, the mother was able to manage a jaundiced, cholic baby girl, fighting to survive. This mother was her daughters hero. With her determination and undying love, she fought to give her baby the best medical care she could. She went days without sleep, and found the possible during the impossible. The little girls grandfather would walk the streets with her in his arms. She was not much bigger than the size of his hands.
Through Gods grace and my mothers love, I am still alive today.
I often wonder if all of this attributed to being born with Chiari Malformation. Did my skull grow to small because I was born so under developed? Did the skull fracture change the shape of my head, resulting in it to grow the way it did?
I dont think there is enough research on Chiari to say for sure or not. Perhaps in time, there will be an answer. For now, I concentrate on what I can do to help expand the research that has been done.
Oct 31st, her mother arrived at the hospital to visit her, only to be told something bad had happened. Her mother thought she had died, but fortunately that was not the case. The nurse had dropped the baby girl on her head fracturing her tiny skull. Her mother wondered what new complications could arise from this. She already knew there was a great chance of sicknesses, infections, blindness and mental challenges for her daughters future.
At 4 months old, the baby girl had gained enough weight to finally go home. Instead of her birth being her mothers birthday present, as she was due to be born Dec 9th and her mothers birthday is Dec 7th, her final release from the hospital was. While being home did not mean the complications and health risks were gone, it meant a family could finally be together as one. With the aide of her own parents, the mother was able to manage a jaundiced, cholic baby girl, fighting to survive. This mother was her daughters hero. With her determination and undying love, she fought to give her baby the best medical care she could. She went days without sleep, and found the possible during the impossible. The little girls grandfather would walk the streets with her in his arms. She was not much bigger than the size of his hands.
Through Gods grace and my mothers love, I am still alive today.
I often wonder if all of this attributed to being born with Chiari Malformation. Did my skull grow to small because I was born so under developed? Did the skull fracture change the shape of my head, resulting in it to grow the way it did?
I dont think there is enough research on Chiari to say for sure or not. Perhaps in time, there will be an answer. For now, I concentrate on what I can do to help expand the research that has been done.
Thursday, November 11, 2010
What is Chiari Malformation and what are the common symptoms??
The Mayo Clinic defines it as:
Chiari malformation occurs when the section of the skull containing the cerebellum is too small or is deformed, thus putting pressure on and crowding the brain. The lowermost portion, or tonsils, of the cerebellum are displaced into the upper spinal canal. The pediatric form, Chiari II malformation, is always associated with a myelomeningocele. The adult form, Chiari I malformation, results primarily from a small back portion of the skull.
When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brainstem can cause neurological signs or symptoms.
Some of the symptoms are:
Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:
In Chiari malformation type II, a greater amount of tissue protrudes into the spinal canal compared with type I. The signs and symptoms can include those related to a form of spina bifida, called myelomeningocele, that always accompanies Chiari II malformation. In myelomeningocele, the backbone and the spinal canal have not closed properly before birth.
Chiari malformation type III
In one of the most severe types of the condition, Chiari malformation type III, a portion of the lower back part of the brain (cerebellum) or the brainstem extends through an abnormal opening in the back of the skull. This form of Chiari malformation is obvious at birth or by intrauterine ultrasound.
Chiari malformation type IV
In people with the even more severe Chiari malformation type IV, the brain itself has never developed normally. This form is also obvious at birth or by intrauterine ultrasound.
Chiari malformation occurs when the section of the skull containing the cerebellum is too small or is deformed, thus putting pressure on and crowding the brain. The lowermost portion, or tonsils, of the cerebellum are displaced into the upper spinal canal. The pediatric form, Chiari II malformation, is always associated with a myelomeningocele. The adult form, Chiari I malformation, results primarily from a small back portion of the skull.
When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid (CSF) that protects your brain and spinal cord. This impaired circulation of CSF can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. Alternatively, the pressure from the cerebellum upon the spinal cord or lower brainstem can cause neurological signs or symptoms.
Some of the symptoms are:
Headaches, often severe, are the classic symptom of Chiari malformation. They're typically precipitated with sudden coughing, sneezing or straining. People with Chiari malformation type I also can experience:
- Neck pain (running down the shoulders at times)
- Unsteady gait (problems with balance)
- Poor hand coordination (fine motor skills)
- Numbness and tingling of the hands and feet
- Dizziness
- Difficulty swallowing (sometimes accompanied by gagging, choking and vomiting)
- Vision problems (blurred or double vision)
- Slurred speech
- Ringing or buzzing in the ears (tinnitus)
- Poor bladder control
- Chest pain, in a band-like pattern around the chest
- Curvature of the spine (scoliosis) related to spinal cord impairment
- Abnormal breathing — specifically, sleep apnea characterized by periods of breathing cessation during sleep
In Chiari malformation type II, a greater amount of tissue protrudes into the spinal canal compared with type I. The signs and symptoms can include those related to a form of spina bifida, called myelomeningocele, that always accompanies Chiari II malformation. In myelomeningocele, the backbone and the spinal canal have not closed properly before birth.
Chiari malformation type III
In one of the most severe types of the condition, Chiari malformation type III, a portion of the lower back part of the brain (cerebellum) or the brainstem extends through an abnormal opening in the back of the skull. This form of Chiari malformation is obvious at birth or by intrauterine ultrasound.
Chiari malformation type IV
In people with the even more severe Chiari malformation type IV, the brain itself has never developed normally. This form is also obvious at birth or by intrauterine ultrasound.
The purpose of my blog
Welcome to my Blog!
I am hoping to provide a better understanding of what Chiari Malformation is, how it can affect someone and explain my specific journey.
Each Chiarian is different because the condition affects us in different ways. There are approx 85 symptoms in total. Ask any Chiarian what their symptoms are and you will notice a pattern however what affects one person may never affect another.
The beginning of this blog will be more educational than entertaining... The entertaining part will come once I've had my surgery and I'm on the pain meds hahaha
I have lived the beginning of this journey and hope you will join me on the recovery part. I encourage anyone else with Chiari Malformation to follow along and share their experiences as well. The more stories told the greater the unterstanding :-)
I am hoping to provide a better understanding of what Chiari Malformation is, how it can affect someone and explain my specific journey.
Each Chiarian is different because the condition affects us in different ways. There are approx 85 symptoms in total. Ask any Chiarian what their symptoms are and you will notice a pattern however what affects one person may never affect another.
The beginning of this blog will be more educational than entertaining... The entertaining part will come once I've had my surgery and I'm on the pain meds hahaha
I have lived the beginning of this journey and hope you will join me on the recovery part. I encourage anyone else with Chiari Malformation to follow along and share their experiences as well. The more stories told the greater the unterstanding :-)
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