Matt's Post-COVID Transverse Myelitis Battle

“Everything was slipping away. Every day, something was being taken from me, no matter how small, I was slowly breaking down. I never thought it could be so dark, to be thinking that at this rate, I’ll be gone by Christmas.”

This was where Matt Dillon was a couple of months ago. Doctors couldn’t give him a diagnosis of what was happening to him, and things were looking grim.

2023 had started well for Matt and his fiancé Kylie. But by the end of February things changed, slowly at first, but life changing. Matt started getting pins and needles in his feet that didn’t go away. A couple of weeks later, he began losing his balance and having trouble walking steadily. By March, he was using a cane to walk. After multiple doctors’ visits and a range of tests including lumbar punctures, MRIs, CT scans, and nerve tests, which involved hospital stays, there was still no diagnosis.

“I lost all strength in my legs and could not lift them at all. I developed severe spasticity and clonus in my legs. I lost the ability to walk entirely and have been in a wheelchair on a full-time basis since around mid-March and have been entirely dependent on Kylie for absolutely everything.”

By April, wheelchair-bound, Matt and Kylie traveled to Townsville to meet with a Neurologist. Again, all tests came back clear.

“I’ve never been so lost in my entire life. My legs had become paralysed, and I could no longer feel my feet. Elsewhere I could feel what I can only describe as the worst nerve pain I have ever experienced.”

By May, doctors had come to a ‘working diagnosis’ of Post-COVID Transverse Myelitis. Matt did have COVID for 11 days in late 2022 with minimal symptoms, except for the second last day when he suffered severe spasticity in his legs and arms, and they started to go numb. He called 000 but the symptoms passed by the time the ambulance arrived.

Throughout May, the symptoms rapidly increased and Matt struggled to breathe as the paralysis reached his chest and started in his hands and arms.

Doctors at the Mackay Base Hospital suggested a Plasma Exchange at the end of May which involved one treatment every second day. The idea was to strip the bad proteins in his blood. This was a real turning point for Matt. The progression stopped! His breathing improved and he started to regain feeling in his toes. Matt then underwent IV Steroids and has been on them orally since.

As of the end of September, Matt can manage about 140 steps and stand for 2 minutes before becoming exhausted. Slowly, through daily physiotherapy sessions, he is building his strength. The aim is to begin hydrotherapy sessions now he is a little stronger.

Matt’s Neurologist originally thought the prognosis wasn’t good considering his initial symptoms, but he has had a complete turnaround. Matt and Kylie still do not know if he will ever fully regain his strength. The journey is slow, and they take it one day at a time.

They have added temporary modifications to their home to accommodate Matt’s wheelchair and thankfully the main living area of their home is on the ground floor.

So far, Matt has spent 23 days in hospitals, undergone countless tests, and hasn’t worked since February 2023. Matt has been entirely dependent on Kylie since March. Kylie has still managed to work remotely throughout the whole ordeal when she can, but it has taken a huge toll on them physically, mentally, emotionally, and financially. They have received generous support from family and friends, and if you can help them in any way with a donation, it would be greatly appreciated. One of their short-term goals is to purchase a transfer bench so that Matt can take a shower more comfortably; and some much-needed repairs to their car. Longer-term remains unknown at this stage. Fully modifying their home may be on the cards, but hopefully not.

“Whilst I am still in my wheelchair, I can now see light at the end of this long tunnel. The first goal is to be able to stand again, and the second is to learn to walk again. Whether I make a full recovery remains to be seen and I do not know what permanent damage, if any will stay with me.”