Neurosurgery needed for improved quality of life

Hi, I am fundraising for my wife, Nicole (Nikki) Hunter and some upcoming spinal surgery.

Nikki has a rare, primary genetic neuromuscular condition (Hyperkalemic Periodic Paralysis) that had an acute onset in 2018 and changed her and our lives in every aspect. Nikki has handled this in both a determined and positive way and has helped with raising education and awareness for chronic illnesses and disabilities and supporting others.

If that wasn't enough, in 2021, Nikki started to have new symptoms and medical issues arise, resulting in multiple hospitalisations, investigations and thousands in medical tests and related expenses.

Finding specialists in the right field and willing to take someone on with a rare and complicated medical history was a challenge (read continued medical gaslighting), but we are grateful to have landed in the care of an amazing neurosurgeon and team including cardiologist, geneticist, interventional neuro-radiologist and neurologist.

Nik has been diagnosed with a perfect storm of issues, each causing and affecting the other, and all complicating her primary condition and day to day life.

Nikki has dominant side, Internal Jugular Vein Compression (the jugular vein in her neck is narrowed and being pinched by bone spurs) which means the blood from her brain doesn't drain as it should and creates all sorts of issues with pressure on nerves and neurological symptoms.

This in turn results in Intercranial Hypertension where the pressure in Niks head and brain increases, causing pain, discomfort and neurological symptoms.

Lastly, this intercranial hypertension has resulted in springing Cerebral Spinal Fluid leaks that is believed to be in both her spinal and cranial. So, you have probably guessed it.... this also causes pain, discomfort and neurological symptoms.

The later 2 conditions can only be managed once the causing issue of the Internal Jugular Vein Compression is dealt with.

Almost 2 years later and Nik has been offered surgery to attempt to address the Internal Jugular Vein Compression. From our research and understanding, in Australia, this surgery has only been performed 5 times total by 2 specialist teams. Nikki has been offered surgery with the team that are working closely with the leading specialists in the UK (we also looked at travelling if we couldn't arrange it in Australia).

Nikki has been offered a surgery date in early December (after a November date was postponed due to hospitalisation) and we had understood/assumed until today, that everything would be covered (excluding excess) between medicare and top level private health insurance.

Unfortunately as the surgery is still classed as experimental, our health fund has agreed to cover the hospitalisation (anticipated 5-7 days) and related expenses, but they are unable to fund the surgeon and anaesthesiologist, meaning we need to come up with around $10,000 in the coming weeks, unexpectedly.

We have made so many life changes, that included losing and reducing incomes, selling vehicles, reducing living expenses etc. and have prioritised maintaining the best medical care and top level health insurance, so this is a large kick in the guts to have a significant and unexpected expense, that is also critical to try and assist Nikki with her quality of life and reduced symptoms. I am proud of how we have managed and continue to manage day to day and hate asking for help, but here I am, hanging pride by the door and asking for anyone who is in any financial position to assist, to please consider donating.

I also understand there are other people out there doing it tough and some people are not in a financial situation to assist. For those of you who know Nikki, you would know how much she has given and gives to wildlife, animals, minority groups and the community around her. She is not asking for anything back and never would, but I am asking for a show of support for her.

For clarity and transparency, this surgery is not a fix-all. The aim is to reduce symptoms of Internal Jugular Vein Compression, Intercranial Hypertension and CFS Leaks and thereby increasing Nikkis quality of life and ability to undertake daily activities and get out in the community. If the surgery is successful (currently the success rate in Australia is 50%) she will still be a wheelchair user and face ongoing challenges with her primary disability, but if anyone is going to face it head-on and fight to live her best life, it is Nikki.

The benefits of reduced symptoms and improved quality of life, Nik has bravely decided are worth the risk of experimental neurosurgery and playing around her neck and jugular vein with sharp instruments. I am scared stiff (as is Nik, but she rarely says/shows it), but am hopeful and support Nikki and her decisions 100%

Thank you for any support and consideration.

Steve