Originally published in June 2021, we’re revisiting some of the most inspiring personal journeys gracing our pages. Today, we’re peeking into the extraordinary life of Julianne—a woman whose resilience and determination have turned superficial siderosis challenges into stepping stones.
Meet Julianne, a 64-year-old dynamo hailing from Devonport in northern Tasmania. For those unfamiliar with the geography, Tasmania is a picturesque island state located 240 km south of the Australian mainland. Julianne’s odyssey is a rollercoaster of medical mysteries, unexpected diagnoses, and an indomitable spirit. Buckle up because this is a ride you won’t want to miss!
The Unfolding Mystery: It’s Not Just a Head Cold!
In April 2011, Julianne began experiencing symptoms that many would brush off as a severe head cold—loss of smell, hearing issues, and legs that felt as heavy as lead. But Julianne knew something was amiss. A visit to her primary care physician led to a referral to an Ear, Nose, and Throat specialist and an MRI scan. The results were shocking: what appeared to be a pituitary adenoma and a past sub-arachnoid bleed.
The Medical Maze: Specialists, Surgeries, and Second Opinions
Julianne was then sent on a whirlwind tour of medical specialists—from endocrinologists to neurosurgeons. After a surgery that revealed she had Pituitary Hyperplasia instead of a tumor, Julianne and her neurosurgeon independently diagnosed the mysterious black spots on her MRI as superficial siderosis (SS). Yes, you read that right—Dr. Google made an appearance in this medical odyssey!
Locating The Trouble
“The German professor who performed the second CT myelogram told me the dura is like a seam in a jumper. If you pull too hard in one spot, you will get a hole up further. I had spinal surgery in May 1992 – 19 years before diagnosis– at T11/12, and the pseudomeningocele was at T3/4. It was a textbook case!
I already had neurological issues from a disc crushing my spinal cord – hence my first 1992 surgery – resulting in Brown Sequard syndrome, which magnified my SS. I had an MRI scan in 2007 after having chronic sciatica. Unfortunately, the SS was not picked up at this scan; otherwise, I wouldn’t have any real issues now.”
The Real Culprit: Unveiling the Source of the Problem
Further investigations led to the discovery of a pseudomeningocele between C1/T4. A second, more in-depth CT myelogram pinpointed the actual bleed site at the T3/T4 level.
“In July 2012, I had a hemilaminectomy to remove the pseudomeningocele, which had set up its blood supply (and contained a large disintegrating old blood clot). They hoped it was the source of the bleeding. I had ten days in hospital, six spent flat on my back. A drain from my spine was taking out 5ml of fluid every hour to give the graft from my leg (glued and stitched), used to seal off the dura, giving it a better chance of healing. My spinal fluid started off the color of stale urine (with red stripes) and, after six days, was the color of pale straw.”
The Unexpected Setback: A Freak Accident
“I recovered well and was almost back to where I had been. On 21st December 2012, I was struck by closing automatic doors in a store while shopping. I fell back onto the pavement, knocked unconscious, fracturing my skull – the occipital bone on the right side.
I have never been the same since.
2018, as part of my legal claim, I saw a neuropsychiatrist who diagnosed me with Functional Neurological Disorder, like post-traumatic brain stress. Unfortunately, this exacerbates all my neurological symptoms. I lost more hearing on the right side, my balance and gait are much worse, and I have chronic tiredness. After eight and a half years of money, frustration, and tears, we have finally settled with the store. Still, unfortunately, no amount of money will ever make me better.“
The Power of Resilience: Taking Control of Her Life
Despite these setbacks, Julianne has been a beacon of resilience. Julianne has explored every avenue for symptom control—from diet changes and regular massages to physiotherapy and Pilates. She’s even ventured into the realm of vestibular rehabilitation. Julianne is the epitome of someone who refuses to let life’s curveballs define her. She’s committed to being the best version of herself, come what may.
The Road Ahead: Treatments and Possibilities
Julianne revisited the topic of chelation therapy with her neurologist in their upcoming meeting. Her symptoms have remained stable, and she leads a reasonably everyday life, supported by a loving husband, family, and friends. Julianne is a work in progress, but aren’t we all?
A Footnote for the Future: The Importance of Follow-Up Scans
Julianne strongly believes that mandatory follow-up MRI scans after spinal surgery could save many from the heartache she has endured. It’s a lesson for the medical community and a testament to her advocacy for better healthcare protocols.