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FAIR FOR RARE: MEGAN's Story

I am 37 years old and live in rural Western Australia, three hours from Perth and have been a tennis coach with Tennis Australia for over 15 years. I am also an author, writer, researcher, medical receptionist, auction clerk and a mum of two adult sons. I was born with a natural thirst to question and research everything and my favourite book has always been the dictionary.

 

What a blessing to wake up every morning and learn new words and their meanings. Over the past few months, I think I have learnt and added at least 500 new words to my vocabulary.

 

To share this story, I have to revisit the last twelve months as it helps to bring my story into context and to share that we should never dismiss the physical signs that our bodies give us. 

 

About 18 months ago, I developed an incessant pain deep within the left side of my chest and neck. It hurt to move and sleep. When I did sleep (hoping for relief), I only woke up even sorer. Like a weird squashed up, compressed kind of sore. All I knew was that something inside my body on the left side felt very compressed and sore. An odd, expanding feeling, that I couldn’t quite explain. My rational self put this down to muscular pain due to playing and coaching tennis for three hours a day, four times a week. In my mind, I thought I might have torn a muscle and life would just have to carry on!

 

About the same time, I developed extremely debilitating vertigo. Up until this time, I had never experienced anything like this or experienced headaches or vision issues. Literally overnight, I woke up to my whole world spinning. Despite my efforts to erase it, nothing helped. I lived this existence for 12 months until weirdly, it just disappeared.

 

After it suddenly disappeared, it was replaced with increased, intense headaches on my left side. I even passed out and hit a wall and experienced two episodes of loss of vision. One episode occurred at work with complete loss of vision with black spots. No matter what I did, I could not see the computer screen. I have to admit, this scared me. When my sight came back after ten minutes, I rationalised that this must be a normal part of ageing.

 

In March 2017, I woke up with no voice. It felt so strange as I wasn’t sick. I didn’t have a sore throat and not for the life of me could I work it out what had happened. Despite my incessant efforts to fix my voice, I have never got it back. Some days I have this weird husky voice and some days, I can hardly speak. I rationalised that as I was a tennis coach and also coaching three senior netball teams, I might have sustained some vocal chord damage.

 

From March 2017 onwards, I experienced about five episodes of SVT (rapid heart rate) while playing sport. I lost my balance, lost my vision, couldn’t breathe and each time, took longer to get my heart back into beat. I am a logical person and put these episodes down to playing a lot of tennis in extreme heat, and getting over heated while playing netball. I told myself that I might get this looked at down the track when I had the time.


When I read back over everything I have just written, I think WOW! When I put all these symptoms together on paper it does seem to reveal something underlying may be going on. However, I never would have believed that these symptoms were somehow connected.

 

In January 2018, something drastically changed in my body. The pain in my chest/neck and head intensified to the point that it felt like ‘something’ was trying to burst or erupt out of my chest. This bursting, compressed pain in my chest and neck was accompanied by severe headaches, loss of vision and a tingly weird left arm that didn’t feel like it was there. I dragged myself to the locum who listened to my symptoms and immediately sent me for a CT of the chest and neck. So off I popped for the CT and two days later I got the result.

 

All I can EVER say to anyone in this lifetime, including my loved ones, friends, family and even a few strangers who may be reading this - is to NEVER dismiss the signs, symptoms and significant signals that your body is giving you. If in doubt about anything, please go and see your doctor and if needed, always investigate a second opinion. A second opinion never costs anything and it may just save your life. 

 

The CT result identified:

 

  • A complex venous malformation involving the anterior/superior mediastinum and extending into the lower neck  (An abnormal connection between veins that do not work properly which over time can rapidly enlarge).

  • The venous malformation has two extra large, congenital saccular aneurysms that demonstrate significant variability in size depending on intrathoracic pressures. One is located on the superior vena cava vein (SVC) measuring 6cm x 7cm and the other on my left brachiocephalic vein measuring 2 x 3cm. Both aneurysms are located on the main veins that carry blood to the head, neck, chest and back to the heart.

 

When I was told the news I thought wow! This is not just a torn muscle after all. No wonder my chest, neck and head had been hurting so much.

 

 With increased chest/neck/head pain, together with a weird left numb arm, I ended up in a Perth hospital with the cardiothoracic team for six days where they performed multiple tests including a CT Venogram (which precisely mapped the veins in my chest and neck) to try and figure out exactly was going on. I was bounced between Cardiothoracic, ENT and Neurology in the hope of getting some conclusive answers of which I am very thankful for.

 

The additional testing also showed up an enlarged vein right on top of my left vocal chord. These are also known as laryngeal varices and are the direct reason for my loss of voice since March 2017. The tests also visualised enlarged varices of the upper oesophagus requiring further evaluation with an oesophageal endoscopy.

 

From the information shared with me, it seems that I was born with this complex venous malformation and aneurysms and I have been asymptomatic (no symptoms) for 36 years up until the end of 2016. For reasons still unknown, this venous malformation and aneurysms were now expanding greatly in size, flaring up, causing pain and some strange health issues internally.

 

I was advised by the Cardiothoracic team that a large saccular aneurysm of the superior vena cava was extremely rare. Two aneurysms even more rare. To date, there are only 30 cases ever reported in any medical journal worldwide since the 1940s. So with 7.6 billion people in the world, the odds of this occurring was not ‘one in a million’, but more like ‘one in 253 million’.  As a writer and researcher, I’m still trying to process this information as it means there is extremely limited information to research and understand more.

 

Presented with something so rare and unknown (and absolutely nothing to Google) the Cardiothoracic team weren’t quite sure what to do with me and I was discharged home still pending the CT Venogram. I literally left the hospital utterly in shock and with far more questions than answers.

 

I had no idea on how to deal with this rare venous malformation and large aneurysms that were flaring up so I ensured that I laid completely flat while patiently waiting to see WA’s top Cardiothoracic Surgeon who was away. I reduced my physical activity to nothing and intently did not use my voice. This minimally reduced the pain and symptoms that flared up in my chest/neck/head and it also preserved my voice. I learnt quickly that any increased exercise or activity; including coaching tennis, playing tennis, auctioning sheep and talking, somehow enlarges my venous system and flares up my symptoms.

 

In early February, I finally met with WA’s top Cardiothoracic Surgeon. He was extremely honest and shared that this was extremely rare. In over 40 years of Cardiothoracic Surgery, he had never seen anything like this and nor had his colleagues throughout Australia. Of the limited cases recorded worldwide, surgery was successful in removing the saccular aneurysm however, as this surgery has never been performed in Australia, it was deemed a major risk and more research was needed. 

 

So then out came the big questions:

 

  1. I asked if the aneurysms would grow in size? He said yes, that is likely.
  2. I asked if the aneurysms could burst? He said he was unsure, however, this was possible.
  3. I  asked if they did burst would I die? He said he didn’t know, but this was also possible.

 

He explained that as this was so rare, there was no medical information to share. However, if I had an Aortic Aneurysm he could tell me immediately if he could fix it, the chance of survival and the percentage of risk. This is because there have been many cases of Aortic Aneurysms throughout Australia.

 

Despite our lengthy conversation and absorbing a lot of information, I can share with you that I still have hope. This is rare which means the medical team are learning and I am learning. So I guess that we are both learning together. And I am thankful for this. I am thankful for a dedicated Cardiothoracic team that is willing to research to ensure the safest and best path forward. To me, this is what makes life beautiful. That there are human beings that will never give up hope and have committed their lives to learning new medical knowledge in the hope of helping other human beings.

 

So moving forward, the future holds many more trips to Perth for testing to try and understand more and figure out a clear path forward. It also means major changes to the way I currently live my life, which is probably the hardest thing to accept. Until we know more information, I have been advised to reduce all physical activity and any activity that uses my voice. This includes coaching and playing tennis, coaching and playing netball and auction clerking which uses my venous system and flares up my symptoms. Not the greatest news to hear but like the specialist said, “It could be far worse Megan”, and I totally agree and understand this completely. There are far worse things than this in life and I am blessed to have such a loving family, my two sons and a handful of gorgeous friends. To me, this is what life is about.

 

So with hope in my heart, I share this information with love and immense acceptance. I firmly believe that when we authentically share our individual stories, it promotes and provides love, healing, acceptance and learning. Luckily for me, I have always believed that everything in life has its own path and our lives are already pre-destined. We just have to live it. I also understand that what is happening to me now is congenital. It’s no one’s fault at all as I was born with this. To me, this is just a minor bump in the road that will teach me even more about this beautiful thing called life with a whole lot of laughter and acceptance.