BRAIN ANEURSYM JOURNEY

Hi people,

My name is Amber and I can definitely say with no shadow of doubt this is not where or what I thought I’d be doing at the age of 31 years old.

In late February of last year I found out I have multiple brain aneurysms with the biggest one measuring around 7-8mm. This diagnosis came after a long battle with doctors for nearly two years where I was consistently dismissed and on many occasions referred to as a “hypochondriac” and advised I needed psychiatric treatment. Eventually I decided to use private health care I had access to via my work and within 2 months of my referral I found out in-fact I was not insane, but had a very serious complex aneurysm case.

For the past year I have spent time meeting with multiple neurosurgeons in the UK and have been given the same outcome. Which is, that I need brain surgery. I not only have multiple brain aneurysms but my case is a very unique and complicated one. I have something within my brain called a fenestration which causes an artery in my brain to duplicate, which isn’t necessarily dangerous, but my aneurysms are all sitting within this double artery. Due to having this rare atomic variant fenestration my complications for surgery are drastically higher than an average person being treated for an aneurysm. I have also been advised the size of aneurysm I have is usually seen in older adults in their late 60s, and at half that age mine is the same size as someone in their 60s which has grew over time. This indicates mine are probably growing quicker than usual. All neurosurgeons I have met with have never performed surgery on someone who has a fenestration meaning they’re not sure what to expect, which increases my complication risks during surgery. I have been given a higher complication rate for surgery than an average patient being treated for an aneurysm, including death, vegetation, blindness and the list goes on. If I decided not to get the surgery I would have a 3% risk of rupture in the next 5 years, meaning my chances are more risky for surgery with the odds I am being given. However, living every day with unbearable anxiety waiting on an aneurysm rupture and living everyday thinking it could be my last is not a way I want to live my life. Although there is a chance my surgery could be successful, at such a young age with my full life ahead of me making a decision which could potentially end my life or change my life forever is a very difficult one with no guarantee of success as none of the doctors have performed the type of surgery I need with such a complex case.

Brain aneurysms do run within my family and unfortunately have ended in death which also increases my odds. I have however joined many brain aneurysm support groups which have been very helpful and educating, through this channel I have found a doctor who is based at nyu in America who specialises in complex brain aneurysm cases and has performed the surgery I need including the fenestration being present many of times. This doctor has also invented a device which would essentially cure my aneurysms. Where in comparison the option I have been given here in the UK is take a massive risk of severe complication and I would also need to undergo the same surgery every 10-15 years and this nightmare would never be over.

Unfortunately, due to my situation and symptoms I did have to give up my job at the end of 2024 which has only added more stress to my life. All I want is my life back and with research my best chances are seeing this doctor in America. Unfortunately, the private health care which I’ve had to continue and now pay for due to leaving my job which costs nearly £300 per month does not include surgery outside the UK. The NHS also does not support referrals to the US either.

Times are extremely tough at the moment and full of uncertainty which at such a young age I never imagined instead of planning a family and enjoying my life, I’m trying to fight for it.

Another downfall of not receiving the surgery I need is how much my life will be put on pause. Due to the severity of my aneurysms if I were to start a family this could be extremely dangerous during a pregnancy which could cause a rupture. Which again puts me in a position of potentially having to accept I will never be a mum. I have looked into alternative options such as surrogacy but this again isn’t supported through the nhs and costs a lot of money.

I would love at least the chance to fight for better odds for my life and even a second opinion of someone who has dealt with complex cases. Even the chance of going to America and getting a consult with this guy could even change things. If he were to accept my case and he agrees surgery is my only option, I believe it will roughly around £70,000, on top of that I would need to pay for a special travel insurance due to the reason for my travel being brain surgery. In case anything did go wrong during surgery and my body needed to be returned back to the UK the insurance is unimaginably high. I would also need to ensure a family member came with me and I would most likely be there for around 8 weeks, taking into account my recovery and not being able to fly for 30 days after surgery.

However, this is all estimations as I’ve not been able to meet the consultant yet.

The good news is, doctor nelson in America has agreed to review my case.

As you can see there is a lot of money involved and unfortunately I don’t have that type of money. Ive looked at every option possible before this one, including if my private health insurance covers it, if the nhs would cover a referral or partially cover it, if I could take insurance out in America as a UK citizen, which non of the above is possible. I’m hoping that I could possibly raise enough money to even get a consultation with this doctor and to help during an extremely difficult and impossible situation.

I never imagined i would be in a position instead of donating to someone else’s go fund me, i would be setting one up for myself, and still in slight disbelief even writing this. I would have massive gratitude towards anyone who could help me.

I will of course keep everyone updated during my journey and hopefully some time in the future I will be thanking every person who helped ensure I regain my life back and ultimately save my life.

Thank you all x