Mater patient walks after 12 years with Stiff Person Syndrome
Thursday, 24 November 2016
For 12 years Rhonda Hodges has been unable to walk or sit comfortably in a chair, been in tremendous pain and only left the house to go medical appointments. After a chance meeting in a medical clinic with a Mater specialist, Rhonda is not only walking again, she has regained life skills most people take for granted.
Suffering from an extremely rare condition known as Stiff Person Syndrome, the one-in-a-million condition left 61 year-old Mrs Hodges paralysed below the waist and unable to move her legs or feet due to very severe spasticity and dystonia.
Her situation was so dire that she even needed to call her husband in from their rural Toowoomba property every time she needed to use the bathroom.
For years Rhonda suffered tremors in her arms and spasms in her legs and many doctors she saw believed it was all in her head. Yet as time went on her condition deteriorated, with Rhonda bedbound in agony for two to three days at a time. The condition reached its peak when Rhonda arrived home from work 12 years ago, and collapsed in her husband arms, unable to walk again―until now.
Rhonda completely lost her independence, only leaving the house every three months to see doctors, with Blue Care visiting three days a week and her husband doing his best to tend to their farm while being Rhonda’s sole carer.
Dr Saul Geffen, a specialist in rehabilitation medicine, first saw Rhonda in June this year. After his initial treatments were ineffective, he sought advice from neurology colleagues and arranged admission to Mater’s Brisbane Centre for Neurosciences.
Neurologist Dr Stefan Blum diagnosed Stiff Person Syndrome after caring for 10 previous patients in his career, and discussed with fellow neurosurgeon Dr Rob Campbell a different treatment option for Rhonda.
They trialled their theory by injecting a dose of intrathecal baclofen into Rhonda’s spinal fluid.
Rhonda was overjoyed with the outcome.
“I woke in the morning and could wiggle my toes… I was just so happy.”
With a positive trial dose, the clinical team proceeded with their plan to insert a baclofen pump via catheter into Rhonda’s spinal cord.
The pump was inserted under Rhonda’s abdomen skin during surgery; the baclofen requiring a refill approximately every three months during a simple outpatient appointment.
While the baclofen pumps have been used for many years for other conditions like cerebral palsy and multiple sclerosis, the combination with baclofen for treatment of Stiff Person Syndrome has never been used in Australia and only a few times worldwide.
The results were immediately life-changing for Rhonda who was able to move her legs and comfortably sit in a chair the morning after her operation and after three days was up on her feet and walking.
Dr Geffen says he is thrilled to be able to offer a solution to a family who thought they had no further options.
“For the past ten years Rhonda has essentially been house-bound, dependant on her husband and unable to walk or to sit in a normal chair,” Dr Geffen said.
“I’ve worked in many hospitals in my career and I’m always impressed with the ethos I encounter with difficult and unusual cases at Mater―we have expert medical help, dedicated nurses and enthusiastic allied therapy staff.
“Rhonda’s life has been changed―we’ve turned a miserable and worsening situation around! She’s a hard–working and brave lady who has given 100 per cent in rehab,” he said.
Neurosurgeon Dr Rob Campbell has been using pumps to treat his patients for years, but never previously to treat Stiff Person Syndrome.
“Baclofen is basically a muscle relaxant which works perfectly with Rhonda’s symptoms,” Dr Campbell said.
“Her body was so tense, and we were sure we could get a good result from the pump/baclofen combination–her rehabilitation under Dr Geffen has seen a dramatic improvement for someone bed bound for so long.
It’s hard to wipe the smile off Rhonda’s face these days. Especially between her biking, balancing and boxing in rehab.
It’s the simple things like setting the table for a meal, sweeping the floor and rounding up the cows on her property that Rhonda hasn’t been able to do for years.
“I’m so excited to get out and herd the cows–I don’t care if I get dirty or step in a cow pat, I’m just so happy to be outside!” Rhonda laughs.
“I can’t sit still at all now–there’s always a job needing to be done.
It wasn’t always this easy.
“People used to think I was crazy, that I was making it up or it was just all in my head,” Rhonda explains.
Taking her independence to a new level, Rhonda is planning a special Christmas visit to see her son in Townsville at Christmas.
“I’m so excited to have booked the flights–I just can’t wait to see my son and his family! Travelling is something I haven’t done in a very long time,” she said.
“Being housebound and in pain all the time took its toll on my husband as well as me. I was so miserable, I couldn’t do anything except lay around as my legs couldn’t bend at all,” Rhonda said.
“My time in rehab has been really great. I have been supported by my physio Denis, who has encouraged me every step of the way.
“I’ve been given a second chance, and I feel so blessed, so grateful to Dr Geffen and all the Mater people involved in giving me my life back.
See Rhonda's remarkable story as told by ABC News, Seven News, Ten News and the Brisbane Times (http://bit.ly/BrisTimes).
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Tags: Mater Health, Mater Private Hospital Brisbane, neurological, neurosurgery, rehabilitation