{ DAY 226 } – Update It’s been a couple of months since my last post…. And in that time I have been patiently living in the land of acceptance while trying not to research every anatomical part of the chest, neck, skull and spine….(but as an addicted researcher - sometimes I just can’t help it ) !! While patiently waiting for surgery dates in Sydney, I have ensured that I wake up each morning with a grateful heart, a thankful smile on my face and a huge amount of hope in my heart. Whatever the day blesses me with - I will always put on my bright red lipstick and exude thankfulness with a loving smile. . . I will be honest and admit that not every day has been rosy. Some days I feel quite un-shiny and in these moments I find that writing, listening to music and having a good ole laugh and cry with family helps with just about everything. Someday’s while watching the sport that I love I momentarily feel sad that this weird complex venous malformation has stopped me doing the physical activity and sports that I love and cherish - But then I remember that everything has its purpose in life and I am reminded that I have always possessed a deep an unwavering faith that our paths in life are already pre-destined. Our paths are blessed to us for immense learning, love, growth and understanding. So if I was born with this rare condition - then I am definitely living God’s plan for my life x Knowing this gives me immense strength, faith and hope. I know deeply that this year of ‘weird health stuff’; that has slowed me down to a snail pace, is not only a blessing – it is also only temporary. Just something that is visiting for a short time, not a long time. In this new slowness I have not only found a beautiful peace, but also an appreciation of the small things and the quiet moments. I see more, I feel more and everything is even more beautiful than it was before. My connections with family, friends and strangers are even stronger than before. When things in life slow down, I find we gain the ability to really focus on the important things in life like our health, family, loved ones and human connection. Over the past few months I have been patiently waiting for news from my specialists about surgery dates at Westmead Public Hospital in Sydney. Westmead is directly linked to the University of Sydney and is a research/training hospital. I understand that scheduling this surgery is a lot to organise, crosses many departments and is not just simple and straight forward. I am deeply thankful to the specialists I am seeing who are trying to make this work. On Thursday at 7am I was thankful to have a phone call consult with Interventional Radiologist Dr Luke Baker in Sydney. Dr Luke offers state of the art interventional services including oncology including SIRT, TACE and Ablative therapies, along with Interventional pain management, spinal intervention and interventional phlebology. I met with Dr Luke in May and he is now looking at scheduling surgery for the end of September 2018. The reason for the delay is that along with his radiological team, he also requires his colleague and Vascular Anomaly specialist Prof. Kurosh Parsi (who I met with in Sydney in May) to be involved in the surgery. Dr Luke Baker was extremely professional to talk to and his words were more than reassuring. I am just so thankful that this can be done in Sydney and that Kurosh will now be a part of the team. The team now consists of: Dr Luke Baker: Interventional Radiologist & Phlebologist http://www.drlukebaker.com/about/who-i-am Prof Kurosh Parsi: Phlebologist & Vascular Anomaly Specialist http://www.sydneyskinandvein.com.au/KuroshParsi At the beginning of August I had another MRI done due to an increase of weird neck, skull, shoulder pain and burning. The result reveals that the venous malformation extends from the chest/neck to the clivus bone at the base of the skull, through the C1-C4 vertebrae and protrudes through the longus colli muscle and the C1/2 articulation. To be honest I don’t even know what all that terminology means, but Dr Luke Baker does and that’s all that counts. He knows how to treat this extensive venous malformation and I have immense faith in his skill and the team he is organising. I have included some visual images so we can all get our heads around it. In the mean time - I have seen my fabbo GP who has increased my pain meds which has magically dulled all the weird pain and allows me to get through each day with a big smile – this I am so thankful for…. xx Speaking with Dr Luke Baker on Thursday has renewed my hope and faith and I am now focused for the end of September. I have no idea on the length of the surgery or the recovery involved – all that will be discussed in Sydney once I am there. I accept everything with a grateful heart. I am so very thankful for my family, love, laughter, my gorgeous Sons, my beautiful friends, country livin' and most of all I am thankful for the advancement of modern medicine especially with Radiological Intervention..x I just wanted to take this moment to personally thank and acknowledge the communities of Dumbleyung and Wagin and EVERY single individual for their immense support, overwhelming love, messages and generosity with multiple working bees and fundraisers. I never expected in a million years that my health would ever take such a perplexing direction and the last few months of ‘waiting- in- limbo- land’ for treatment dates has left me quite vulnerable. I just want you all to know that I am forever grateful for everything you have done and I appreciate and LOVE you oh so much xxx. I once again share this information with immense love and hope you know that I honestly love and cherish you all x I hope you all have a beautiful, fabulous Sunday Xx Love Meegs x ❤❤❤❤❤❤ #VM #VenousMalformation #PIK3CA #Sclerotherapy #Bleomycin #ComplexVenousMalformation #Aneurysms #AneurysmRepair #LargeSaccularAneurysms #RareCondition #Congenital #InterventionalRadiology #Vascular #VascularBirthmark

{ DAY 133 } Complex Venous Malformation - SYDNEY x ❤ * Its been a bit of a very long week of appts....and I am so very thankful to everyone for their messages of love and support ❤❤ I have been blessed this week to see three of the top specialists in Australia and yesterday I had a 4 hour Specialist appt with Prof. Kurosh Parsi. The Australian authority on rare and complex Vascular Anomalies. He was so very professional/ thorough and has explained that this case seems to be a little more complicated than I first thought. But thankfully I am cruisy and just rolling along and accepting everything that happens x I believe our lives are already set and we just have to live it. I am thankful to be living in an age where medicine has advanced so much .. x ❤ This week is the first time in 5 months that a specialist has actually shown me an image and explained what is happening inside my body. I am so very thankful to beable to understand more...(check out the images below ) x Along with all the MRI scans I had done in WA...Prof Kurosh Parsi also Ultrasounded my whole neck, throat and head where he has found blood clots in the venous malformation in my head near the skull which has been missed. This along with the large aneurysms in SVC and Brachiocephalic veins are what have been causing the extreme pain and weird symptoms over two years... Unfortunately as the SVC vein is the major vein that drains all the blood from the head straight to the heart, this means that my case is now deemed as high risk and needs to be treated in an ICU environment. It is a risk that during treatment that more clots may arise and move straight to the heart. The good news is that this complex malformation is venous and not arterial. If arterial, they are unsure they could even contemplate treating it. So venous is great !!! Kurosh now wants me to see an Interventional Radiologist for review and consultation. I have had to change my flight home today to be at Westmead Hospital to see Dr Luke Baker, Interventional Radiologist for assessment. After just 15 mins with this specialist he and Kurosh have decided that treatment/surgery will have to be tackled by a Multi-disciplinary team of Specialist Surgeons which will involve Vascular, Cardiothoracic and ENT... Prof. Kurosh Parsi likens my case to that of dealing with a lion. A venous malformation this extensive and complicated is the lion and does not deal well with being irritated. The best way to treat it is to attempt to erradicate it in one go in an ICU setting. You need to kill the lion/malformation in one go or it may cause additional health issues. A bit of a dramatic analogy from a specialist...but his words have actually helped me to understand what we are dealing with as the venous malformation will continue to grow/expand and cause disabling symptoms. I am so very thankful to be in the company of these professionals who are fearless and strive for the best patient outcome. I am so thankful to be in Sydney as Kurosh has advised the only other places this could possibly be treated is in Seattle or Colorado in the U.S. ... He explained that this is not a quick fix...so for me, the future involves more trips to Sydney and being here for some time for treatment. This is wonderful news to help me getting back to being the good ole healthy Meegs who can Coach Tennis, play pennant tennis, sing Karaoke and talk you all under water ...😂😂😂. A treatment plan will be put into place in the near future x ❤ I am so thankful for my family... love... laughter...my gorgeous Sons...my beautiful friends...community support...country livin' and most of all I am thankful for the advancement of modern medicine especially with Radiological Intervention..x Im sitting here with Shelley Hamersley at Westmead Hospital laughing and absorbing all this information before flying home at 730pm tonight x I share this information with immense love and hope you know that I honestly love and cherish you all x I hope you all have a beautiful - fabulous day!!! Xx ❤ Love Meegs x ❤❤❤ #Rare #RareCondition #Congenital #VenousMalformation #Mediastinum #Neck #RadiologicalIntervention #Aneurysms