I was diagnosed with a Spinal Cord Lipoma in July 2014. A congenital condition as it turns out. Lipomas can appear anywhere in your body, under your skin, in your arm pit – guess I was extremely (un)fortunate to have one in my Spinal Cord!
Of all of the Spinal Cord Tumours out there (which in themselves are fairly uncommon), this one seems to be one of the rarest I’m told. Lipomas are mostly benign, composed of fatty tissue and slow growing.
In 2008, I was pregnant with my first child. During that time I developed what was described to me as “Restless Legs Syndrome”. It drove me to the brink of insanity, I remember at 7 months begging my obstetrician to induce me to relieve the discomfort. But, once my daughter entered the world, the symptoms subsided. It was not until 2010 when I became pregnant again that I sought the recommendations of every practitioner I could. I soon had a mini dispensary of concoctions, remedies and supplements that would see me through the next 9 months and to some extent, it did. My obstetrician, to this day has never encountered, in her entire career, a case like mine. We now know that it was never “Restless Legs Syndrome”, but nerve compression caused by the baby taking up so much space.
From then on in neurological deficits slowly surfaced. There were visual disturbances, leg spasms, headaches, back aches, exaggerated reflexes, bladder disturbances, memory probs, imbalance, tingling and numbness in my limbs.. It was the constant dropping of things, and falling down and my legs giving way, that had me thinking something wasn’t quite right… So, whilst these symptoms had been reported to my GP on various visits, it wasn’t until late 2013 that something ‘clicked’ and I was referred to a neurologist. I waited for four months to see the neurologist (on a non-urgent basis), still unaware of what was going on inside my spinal column. A lumbar puncture and four MRIs later – the original hypothesis of MS was abolished and an Intradural Intra/Extramedullary Spinal Cord Tumour was diagnosed. My tumour is located at the thoracic region (T7-T11). Due to its size it was now considered urgent.
So, (only a few hours later) off to a neurosurgeon I go. He also happens to be the Head of Neurosurgery at the hospital’s dedicated neurosurgical unit, here in Perth, Australia. Besides all the usual risks of a long haul surgery, I’m told the main risk is permanent paraplegia. His concern in this case was that there is an interpersonal relationship between the lipoma and the spinal cord itself. Which means total removal is unlikely since the lipoma is not a separate entity. The main goal of the surgery was to decompress the spinal cord nerves. The lipoma will continue to grow so regular MRI scans and follow up will be a part of my future. The interventional neuroradiologists, neurosurgeons and neurophysiologists all agreed that surgery was the only option.
My T7 – T11 laminectomy surgery was scheduled for August 13th 2014.
The day after my surgery my neurosurgeon told me that the tumour looked like a lipoma (which pathology later confirmed) and that approximately 10-20% was resected because it was intimately connected with the spinal cord nerves. To free up some space he inserted a dural graft combined with the removal of 4 laminae from my vertebrae. …He was happy overall with the surgery and concluded by saying that my spinal cord was “living on borrowed time”.
I am continuing to experience a variety of post operative symptoms. Some of it is nerve pain… The weirdest feeling is the lack of sensation (including numbness & tingling) from my waist down. I am not able to sense temperature unless it is at extremes. I have extreme lethargy, poor concentration, visual disturbances, weakness in both my legs, imbalance, hypereflexia and bladder and bowel issues. I am learning to live with these ailments as best I can. I am currently taking pregabelin, amitriptyline and when needed ibrobrufen. My next scheduled MRI will be Oct 2015 and then yearly.
When I was first diagnosed, my immediate reaction was “I have a what in my where?” So rare are these tumours that most people (including me) had not heard of this before. I am extremely grateful to my neurosurgeon and his medical team for performing such a delicate (and long) surgery and preserving my ability to walk. I am also understandably very fortunate that in my case my tumour turned out to be benign.