Alice's Medical Journey (2025)

16/03/2025

Wednesday was 1 year since my life changing AVCs surgery.
This time last year I was lying in a hospital bed on the other side of the world in Germany, recovering from one of the biggest things of my life, unsure if it worked and what the future looked like. Now I’ve just completed my second week of biomed and although it’s been very intense (which I may have underestimated) I am loving it and It’s shown me how far I’ve come in the last year.
Yes there are still flare ups here and there but there always will be because that’s the reality of EDs and AVCs. But in the big scheme of things the surgery worked and the quality of life and the opportunities surgery has given me are endless! So for that I’m super grateful to Prof Sandmann but also to everyone who helped me get to Germany so thank you!
Excited to see what the rest of the year holds

01/01/2025

2024 you were one crazy rollercoaster of year! It was a year that almost broke me but also saved me. A year focused on fundraising, surgery and recovery something I never thought I’d be living through but I made it!

Things have been going pretty smoothly the last couple of months. No things aren’t 100% perfect with eds related pains and the all annoying back pain but looking through all my photos back to this time last year the changes with what I’m able to do and how I’m feeling are unimaginable and there’s so much to be grateful for! My pain is near to nothing, I can eat again, exercise again and do things that this time last year I could only dream about. I’m finally gaining weight after being in a bit of a limbo post op, my stamina, endurance and strength has also improved massively.
I don’t know what 2025 will look like exactly but my big focus is on continuing to get stronger and just back to as much normality as possible with eds. Exciting news I’m enrolled to start studying at Auckland uni which I’m really looking forward to!!
Thanks again to everyone who has and continues to support me, life would be looking a lot different now otherwise 🫶🏻

25/09/2024

A couple of weeks ago marked 6 months post op!!!
Over that time I’ve continued to see so many improvements whether they’re big or small. Here’s a bit of what ive been up to…
I’m working with a physio who specialises with Ehlers Danlos patients to build back some strength. It’s been so nice to start feeling stronger, and also to see some muscle growth so I’m really enjoying that. I managed to walk all the way up Mt Eden which felt like a massive achievement and probably the most intense exercise i’ve done in a long time! I’ve been gaining more confidence with food, which has been a bit of a slow process in terms of how my body reacts to certain things but I’m getting there. I even got to celebrate my 20th birthday! something I never really managed to do for my 17th, 18th or 19th so that was pretty special. Otherwise I’ve just been getting out and about more with friends, driving and just doing things that 6 months ago I could only really dream about.

That’s not to say I don’t still have my struggles both mentally and physically. I’ve been struggling a bit with some small but to be expected pain flare ups as well as some pretty intense lower back pain which has set me back a bit in terms of exercising as standing/walking for long periods of time can be tough. But I’m working with my physio to figure out other forms of exercise I can use to alternate with walking and take the load off my back while still building some strength and fitness (maybe even some swimming some point soon 🤭)

But if I look past that to how things were 6 months ago and over the last 3 years, there are so many more positives than negatives. Its 6 months that I haven’t relied on a feeding tube, 6 months that I haven’t been bed ridden, 6 months that I haven’t had to go to hospital, and 6 months that I haven’t been in unbearable pain. It’s crazy to see how far I’ve come, so thank you to everyone who’s supported me along this journey and allowed me to get to this point!

04/06/2024

It’s officially been 3 months since my surgery which is pretty crazy to think about. I’ve been a bit quiet on this account since getting back to NZ but a lot of it has been spent processing the last few years and the toll it’s had, focusing on recovery and just enjoying getting out and about.
I was talking about it with my parents and looking back at the last 3 months and beyond there are so many improvements whether they’re big or small. I’m managing to go on a daily walk which I’ve noticed an increase in pace and distance even in the last week. I’m out shopping, seeing friends, I’ve started driving again, going out for coffees, treats and so much more. These are all things that before surgery were basically impossible and I haven’t been able to enjoy for almost 3 years so it’s been really nice being able to do these things and gain some independence and normality back.
I have been dealing with some new pains which have been pretty frustrating and we’re trying to figure out what they are. It’s hard having EDs as yes a lot of the comorbidities can be treated but unfortunately EDs is something I’ll always have to deal with. But overall in terms of AVCs I think I can say that so far the surgery was a success. I don’t have any flank pain, no stomach pain, I can eat, walk, stand and my body is just functioning better in general. In no means am I 100% better, but I’m 100% better than I was pre surgery and that’s what i try to focus on especially on the days where things aren’t so great.
They say that it’s a year long recovery with ups and downs so 3 months is still early days, but it marks a milestone where the tissue has healed and I can start using my body more and hopefully build some strength to aid my recovery. I’m hopeful things will continue to improve so I can begin to think about work, uni and so much more!

25/04/2024

Tuesday marked 6 weeks post op and honestly that time has flown by. The flight back from Germany really took it out of me and jet lag on top of that has made it a rough couple of weeks but things are starting to get a bit more normal. I’m managing to go on small walks most days which seems so crazy to me considering 6 weeks ago prior to surgery I could barely walk 100m without feeling like I was going to pass out from POTS symptoms or my leg giving out. For the first time in 2.5 years I’m not on any medication for my heart or pain which is such a great feeling and crazy even to my doctors.
It hasn’t all been positive and I don’t want to give people the wrong idea that I’m 100% better because in reality recovery is and has been tough and definitely not linear. There are days where I have random surgery pains and lots of tiredness as well as back and rib pain which can be hard not to get caught up on. There’s still a long way to go but looking back at where I was before the surgery and even 1-2 weeks post op the improvements are so insane.
Getting back to Auckland has been nice although tough mentally and me and my family have really started to process the enormity of the last month or so. For now my focus is on recovery and continuing to build on my strength and eating. I look forward to slowly getting back to normality and being able to do more hopefully soon

09/04/2024

It’s been so nice getting out and being a bit of a tourist with dad over the last couple of weeks while I continued my recovery in Düsseldorf. The weeks involved going to the markets, seeing a few sights, some retail therapy at the amazing shopping area (NZ really doesn’t compare) and enjoying some yummy German treats. Yesterday we took a trip to cologne where we saw the cathedral and also visited the Lindt chocolate museum. It was so beautiful and a nice change from Düsseldorf. It’s definitely been a tough recovery so far with a long way to go and each day is still up and down but I’ve felt myself getting stronger each day with being able to walk further and also endure longer periods out and about.
Tomorrow we begin the long trip back to NZ. It’s a bit bitter sweet as I’d love to stay and keep exploring Germany and what it has to offer but honestly the last 5 and a half weeks have been filled with quite a bit of home sickness so I’m looking forward to being back in NZ, seeing family and friends and continuing my recovery from there.

26/03/2024

Yesterday I was discharged from the hospital after 14 days. It was definitely a scary feeling leaving the safety of the doctors and nurses but also needed to happen as we were starting to go a little bit stir crazy.
I managed to grab a photo with the man himself before I left. I am genuinely so grateful for this man’s knowledge and skills. It’s still early days but there are definitely improvements I’ve noticed over the last 14 days compared to pre surgery , e.g my ability to walk, stand, eat. I’m also so grateful for the amazing team of nurses and other doctors who made the stay so smooth and made us feel so cared for. I won’t lie there’s been improvements but the last 2 weeks have probably been some of the toughest thing me and my family have been through. There were times where I thought I couldn’t do it and some days are still like that. The nights were particularly hard as the pain always seemed to be worse then. Being on the other side of the world away from the comfort of NZ has also been a challenge but all the support and messages from back home have been a big help.
We will spend the next 2 weeks staying in Dusseldorf resting and recovering but also having a good look around before heading back to Auckland.

18/03/2024

1 week post op post
With tomorrow being 1 week since surgery I thought I’d give a little update on the week. It’s been a rollercoaster of emotions with lots of highs, lows, tiredness and a bit of homesickness but I’ve managed things that a week ago seemed like and eternity away.
On day 2 they had me sitting, and then day 3 I was walking. Since then I’ve gotten stronger each day and am able to walk relatively unassisted. They’ve removed my drains and tubes so I’m feeling a lot more free and not like I have tubes left right and centre.
And I’m eating!! (kumara being my fist solid food iykyk) but have been slowly introducing more food each day which has been amazing
I won’t lie there’s been some pretty awful moments with some days and nights being very painful but I’m just taking it slow and day by day while the body gets used to working in a different way.
It’s still early days and i still have lots of pain medication from the epidural which will be removed at some point so could make for a rough and interesting week. The nurses, doctors and staff here have been looking after us well and are super amazing!
Thinking lots of home and definitely missing it but thank you to everyone for the ongoing support, it makes the tough days a bit more bearable

13/03/2024

Hey everyone it’s a bit of a delayed post but I had my surgery on Tuesday morning Germany time!! It lasted roughly 6 hours. There were a few minor complications and surprises for the surgeon in regards to the severity of the compressions being more than the scans showed, but everything went well.
I’m still feeling very groggy but the pain management here is amazing so at this stage I’m not in too much pain. 1 fight down, 1 long recovery to go!

07/03/2024

Yesterday I had my scans with Prof Scholbach. He was super super lovely and very thorough explaining everything in detail.
For those that are interested, he has diagnosed me with

1. Complete compression of the left renal vein/severe nutcracker syndrome
2. Massive collateral veins in the spinal canal - the worst he’s seen
3. Subsequent spinal congestion
4.Collateral veins in the pelvis
5. Massive pelvic congestion
6. Severe May Thurner syndrome on both sides
7. Severe median arcuate ligament syndrome
8. Extreme lordotic curvature of the lumbar spine
9. Compression of the splenic vein
10. Disturbed duodenal function
11. Hyper-mobile Ehlers-Danlos syndrome - likely the underlying cause
12. Midgrade compression of the vena cava inferior by the protruding spine
13. Slipping rib syndrome
14. Massive orthostatic nephroptosis on the right side with poor kidney perfusion/floating kidney
15. Clinical and sonographic suspicion of a Borna virus infection

The number and severity of the diagnosis is a lot to take in and honestly more than we were expecting but it also explains all the pain and symptoms I am dealing with. It’s confirms I’m in the right place and its reassuring to know that treatment is an option.
We will spend the next couple of days in Leipzig before heading to Dusseldorf where we will meet with the surgeon and prepare for surgery which is scheduled for the 12th

04/03/2024

After a long 26 hours of traveling we made it to Frankfurt. Flying was definitely intense and my bodies feeling it but happy to be in Germany. We’ll spend a day here before catching the train to Leipzig tomorrow in preparation for scans on Wednesday

25/02/2024

1 week to go! It’s been a busy few weeks organizing last minute forms, medications and everything we need for Germany, but we’re getting there

We wanted to say a big thank you to everyone who has donated so far, without you this wouldn’t be possible. A special thanks to Miles Construction and the businesses associated with them, Luxe & Duke, friends and their delicious baking, flowers, an incredible art exhibition, bbq, and all the other kind donations and fundraisers that have happened over the last few months.

We had such a successful bbq at Herne Bay Rackets last week so thank you to everyone who came along and also to those who gave their time to help out. The amount of people that came down to the club was surreal and it meant so much to me and my family to have friends, family, members and people from all over donating, bidding and supporting us on the final step before Germany.
Also to friends and family for the ongoing love and support we couldn’t do it without you so thank you 💕💕

Alice's Medical Journey