Chiari Malformation was something that I had never heard of until I was just about to go under the knife for it… twice. I always thought that I was unstoppable and the healthiest human around. I was a busy dancer, singer and generally quite an active person. This is a post to fill you all in on my “condition”. I guess you could call it that. A medical occurrence that has affected me at some stage in my life and is still lingering just to feel as though it has someone close. It needed a friend.
I have “Syringomyelia” – Pronounced SAH-RINGO-MY-EELIAH
Why am I writing this? Because September is Chiari Malformation awareness month and I thought it would be a good way to share how I try to keep myself healthy and sane.
In the simplest way possible, I have cysts within my spinal cord which over time caused some pretty nasty complications. As Wikipedia states:
Syringomyelia is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. The damage may result in pain, paralysis, weakness, and stiffness in the back, shoulders, and extremities. Syringomyelia may also cause a loss of the ability to feel extremes of hot or cold, especially in the hands. The disorder generally leads to a cape-like loss of pain and temperature sensation along the back and arms. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.
The above image isn’t me but shows a significant white lump within the spinal cord. This is a syrinx (cyst). In my case, my whole spine from tip of the neck to the very bottom was all white.
My symptoms were breathing difficulties, muscle wastage in my left hand, dizziness, loss of balance, migraines, blacking out and a loss of feeling in my left hand. All are getting better! Except… my left hand is struggling.
What caused all this? Arnold – Chiari Malformation.
Simple terms? My Brain Stem had a little fall and decided to block the opening of my spinal cord and wouldn’t let anything pass as no one knew the secret password. So say hello to cysts all throughout my spine. The fluid filled vacuoles that couldn’t break free!
Above is the picture of my neck after two lots of surgery. My scull has been shaved to make a nice hole for the cysts to naturally drain themselves. Go you good things! DRAIN! I’m happy to say that the cysts are getting considerably smaller, or in medical terms;
With the Arnold-Chiari malformation, surgery aims to give the cerebellum more room in the base of the skull and neck, and improve the flow of cerebrospinal fluid at the same time.
Let me go on with saying that we are bloody lucky to have the Neurosurgeons and medical staff that we do in Australia. I was blessed to be under the wonderful care of Mr Frank Tomlinson and all the amazing staff at the Wesley Private and BrizBrain & Spine.
You can imagine that being someone who suffers from a Chiari Malformation scare I would be very cautious of my health. I still keep active however I am very picky with what physical exercise I do.
This is super important at a younger age to help create a healthy path when aging. It’s EXTREMELY important to learn HOW to lift weights so always invest in hiring a Professional Trainer to give you tips on technique when starting out and always have a few refresher sessions down the road.
I was lucky to be under the wonderful eye of Marc Ramsay when I was a member of Fitness First. He taught me a lot about technique and was a fantastic trainer!
I don’t go too hardcore with heavy weights. I find if I lift too heavy too often I put strain on my neck and body.
With my ballet background, Pilates training has been my absolute saviour. It’s my escape and meditation and ever since I have started training regularly the difference it has made on my body is incredible.
I have a lot of fun at Pilates and that’s always something you have to keep in mind when exercising. Have fun! I absolutely love my classes with Jaz at Be Reformed Pilates Coorparoo and if her classes are full I love training at Studio Pilates Coorparoo. Two amazing studios that are clean and have a great vibe about them.
I have also picked up some tips and pointers along the way to make sure that I can practice my Pilates when traveling and at home.
Physio & Massage Therapy:
Any spare time I get I make sure that I get a massage and visit my physio. Although… I have been slack lately and way too busy to even stare in the mirror and pluck my unruly eyebrows.
I cannot praise the staff at Body Leadership Australia and in particular, Paul, who I have been seeing for… well… forever!
The sessions are painful but worth it.
Foods to reduce inflammation:
These won’t cure my condition but I’m a firm believer that all my troubles stem from inflammation and stress. I love eating healthy however I will splurge quite a bit… I’m only human… If I make anything you can always guarantee that there will be cinnamon in it…. Here is an amazing smoothie recipe that I love to help combat inflammation. Got to keep my muscles and scar tissue happy.
Anti – Inflammatory smoothie
Submitted by Claire @ Team Raw Blend
Serves: 1- 2 people
- 250g chopped pineapple or paw paw
- 1cm cube fresh turmeric, peeled.
- 250ml coconut milk
- 1 tsp coconut oil
- Small pinch of vanilla powder
- 1 tsp cinnamon
- 1cm cube ginger, peeled.
- 1 tbsp chia seeds.
- Put all the ingredients into the Vitamix 2L container in the order listed and secure the lid.
- Select Variable 1. Turn the machine on and quickly increase the speed to 10, then override to High.
- Use tamper to effectively press the ingredients into the blades if required whilst processing.
- Blend for 30-60 seconds or until desired consistency is reached.
- Stop the machine and serve.