{ DAY 133 } Complex Venous Malformation – SYDNEY x ❤
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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
