Nutcracker syndrome gets 0 stars. Please help me get it fixed in Australia!
Fundraising for Nutcracker syndrome surgery not available in NZ
Taranaki
Hi! I'm Nic.
It's been a really long ride to get to this point and I'm about to go into my biggest battle yet!
I have EDS, arthrogryposis & severe kyphoscoliosis. These affect every part of my body, but my gut is the most problematic, & I have a feeding tube & central line to help manage this. Up until about 2 years ago I was able to live pretty well. I spent my time regularly breaking land speed records in my wheelchair with my dog, and volunteering for a local mental health initiative.
In April 2025, I rapidly deteriorated after a massive gastric bleed. Things have been really rough since, with more bleeding & cardiac issues. I was losing all hope but by the grace of God I found an incredible vascular surgeon in Hamilton who knew exactly what to look for, and I have been diagnosed with severe left renal vein compression. Otherwise known as Nutcracker syndrome, I can tell you it's significantly less magical than the ballet. No sugarplum fairies & more like an actual nutcracker on my veins! It's compressed by the SMA and portal vein which are causing major issues too. The fix isn't simple but there IS hope. I've been referred to a vascular surgeon in Canberra who is an expert at unsquishing this vein.
I have health insurance covering some costs,but I need to fundraise the rest. I have to go twice, first for the consult on May 12, and then back for the surgery at a later date. I'm very complex & there is a lot to consider, and I'd love to have you join me in this wild ride!
Use of funds
Flights and accommodation for me, surgery & hospital & transport costs.
Latest update
Long overdue update 1 April 2026
Hi everyone, sorry this is long overdue.
Flights and accommodation are booked and we leave on the 9 May, returning on the 13th. I booked before the fuel crisis!
Everything was much cheaper if we go the day before so we're hoping to do a little bit of sightseeing while we're there 🧑🦼💨
Things are still rough and I feel like I'm balancing on a tightrope.
The last 2 weeks I've been in hospital with bacteraemia. My central line was clear but it was pulled anyway and I'm just doing time until I can get another one placed. I need to have one more set of clear blood cultures and then hopefully my line will be replaced after Easter.
Many of you have asked what the surgical options are, and to be honest I'm not entirely sure. There are a couple different options, but I've been told the mechanism of compression is different to others with Nutcracker as the portal vein is enlarged too and that does complicate things.
It's going to be really good to see this surgeon in Canberra. He can see my gloriously unique bag of bones in person and we can make a game plan. I sense it's not going to be as simple as just booking me for surgery, but at least I'll have a clearer path forward.
It's scary and there are a ton of unknowns, but for now, "when i am afraid I put my trust in God; I have no fear" Psalm 56:10
Here's a pic of me having a cuppa for the first time in 10 days!☕
With all my aroha,
Nic 🌻
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Thank you so much lovely xxxx
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