Thanks for taking the time to visit my JustGiving page.

Due to my up and coming brain surgery next week, myself Colin, Rachel, Nick and Auntie Sue are shaving our heads on Tuesday to raise money for a charity which means a lot to us as a family. We would like to raise some money and awareness for The Butterfly AVM Charity, which is specifically for AVMs and doesn’t get much recognition or support, as they are so rare. We would be so appreciative if you could sponsor us and help a charity so close to our hearts.

I will also be donating my hair to The Little Princess trust, which make wigs for children that have lost their hair due to cancer treatment or other conditions.

Thank you in advance for any support you can give!

Rebecca's story

From the age of 11 I suffered with horrific migraines which were just put down to hormones. I would get them every day for weeks and then nothing for a few months. It was awful and very debilitating, affecting my school life and teenage years.

 The day before my 16th birthday, whilst suffering with a particularly severe migraine, the peripheral vision in my right eye disappeared and didn’t return. I was sent for scans where they discovered that I had a large arteriovenous malformation (AVM) in the left temporal lobe of my brain. Over the next few weeks, I was admitted to Frenchay Children’s Hospital to have 3 embolizations; this is a procedure where platinum coils are transferred through an artery in the groin to block the veins and blood flow that feed into the AVM. It was a very scary time for my family, but we received the most amazing care and treatment.

What is an AVM?

AVMs occur when a group of blood vessels in the body forms incorrectly. In these malformations, arteries and veins are unusually tangled and form direct connections, bypassing normal tissues. This usually happens before birth or shortly after. Most people with AVMs have no initial symptoms or problems. Instead, the problem is discovered when health care providers treat another unrelated health concern. Often, AVMs are only found during an autopsy after rupturing.

Next steps

When I was 17, I went to Sheffield to have stereotactic surgery. This used gamma-knife radiosurgery and is used for AVMs and tumours that can’t be treated with craniotomies or other more invasive surgeries. The worst part was having this metal helmet screwed into my head. You then lie in the tunnel for 2–4 hours whilst rays are aimed at the AVM to form scar tissue. The actual treatment can take 2–5 years to see results. I had to have 3 rounds of this over the years and it has shrunk the AVM massively so it can barely be seen. I have been so lucky as this treatment allowed me to live a very fulfilled and normal life. When I was 16, I was determined to still do my GCSEs at Plymouth High School, I then did my A levels, went to Uni, learned to drive, went to drama school, travelled, made incredible friends, got married and have had 2 beautiful children. All things that could never have happened if it wasn’t for the amazing NHS, all the incredible doctors, nurses, and neuro- teams and the constant love and support of my amazing family.

Skipping to late 2022

I’ve since had yearly brain scans to monitor the AVM, however, over the last 5 months I had been experiencing headaches, extreme pressure in my head, ringing in the ears and seizures. I’ve ended up having two separate hospital stays at Derriford Hospital and it was initially thought that I had suffered a brain haemorrhage around the AVM site which had then caused swelling. I was put on a course of steroids which eased the symptoms but every time I came off them, the symptoms returned more severely, and the swelling increased. Due to the swelling, brain scans were unable to give a clear picture of what was going on, so I was put on a long-term course of steroids to decrease the swelling enough to enable the scans to give a clear picture of what was happening.

Two weeks ago we found out that a tumour has developed consisting of scar tissue that formed after my previous radiation treatments. The consultant is 95% sure it is a Masson’s tumour, which is benign, and that it can be removed safely, and I am now booked in for brain surgery on the 23rd of February at Derriford. Eek! 

Not only is it rare to have an AVM, (only 1% of the population), but there are only around 40 reported cases of a Masson’s tumour developing after brain radiation therapy! Typically, I never win the bloody lottery or run into Ryan Gosling though!

As I will have to have a portion of my head shaved prior to the surgery, I thought it would be a good opportunity to raise some money for charity by going the whole hog and Rachel my big sis and some other amazing family members offered to support me and do it together! So when you think you see Phil and Grant Mitchell in Plymouth, no it is just two of the Jagger sisters so don't mess with us. Ha! :)

Thank you so much for all your support, we will keep you all updated with recovery.

Lots of love and positive vibes,

Rebecca and the Jagger-Rowden Family  X