Help Siggy make it through the next surgery

Our sister, your friend, colleague, confidante – Sigrid ‘Siggy’ is going in for another surgery..

It’s been over a decade of tests, wrong diagnoses, lumber punctures, brain surgery repairs, stent put in.. and there is no end in sight, unfortunately.

There is no fix, this is a lifetime diagnosis - Idiopathic Intracranial Hypertension (IIH)

She is an unlucky 1 in 100,000.

Basically, forever the cerebrospinal fluid builds up around her brain and spinal cord. For Sigrid, it impacts her eyes and hearing, meaning she is left suffering headaches and migraines for most of her life. The fluid has cracked her skull a few times. It then leaks past the skull, which is dangerous for infections such as meningitis. Because of this, Siggy is often rushed for tests at a drop of a hat.

In 2014 Sigrid was finally diagnosed correctly. She had her first fluid leak repair – they patched up the skull, and removed exposed brain tissue. In true Siggy style, she says this is due to her being too smart and the brain trying to repair itself.

In June 2022, the surgeons put a stent in. She had to push to get the neuro-surgeons to agree to do this one. The odds were bad for this surgery, but she was determined (as Siggy is) to have it done at the chance she might have some normalcy of life. She had spasms and stopped breathing but made it through!

Unfortunately, early last year there were signs the stent wasn’t the answer.

So, here we are, going in for another leak repair. This time, they’ll lift some of the brain to repair the dura (thick membrane that surrounds the brain and spinal cord. It is the outermost of the three layers of membrane that protect the central nervous system.)

We’ve usually kept Siggy’s condition pretty quiet, at the request of Siggy. However, this condition is costly in scans, specialist appointments, surgery, travel costs to Sydney including accommodation (the only doctors that capable of attempting such surgeries in Australia) and in the time she needs to recover.

Siggy has been told on numerous occasions that due to her disability she will never work another day in her life. While she comes to terms with living with a disability, she has proven them wrong every time, managing to return to work, although each time it takes longer to recover and has meant moving in with Mum for 1-2 years at a time.

She is determined this time, to keep as much of her independence as she can. After over a decade, we think she deserves that.

We’re looking at a week in hospital, up to 8 weeks of her not being able to do much at all (a little in Sydney and then some back home in Temora). Sigrid is then left with the uncertainty of what life will look like, and how long the recovery time it will take this time around.

We do have the absolute best medical team, in what they do, working on her. We are forever grateful for the stars aligning to give us that (ask me about this story one day!)

If you can give up a coffee this week or have a few bucks to help take the stress off (because ultimately this does help with brain stuff), then please consider sending it her way.

Her humour never waivers, she holds us all up!

**She asks that you try to limit questions if you run into her (it's an emotional journey), but she will accept high-fives!!