Hopes for normal life dashed

SHE CAN'T brush the inside of her teeth, bite into a hamburger or suck on an iceblock.

The long-term effect of juvenile arthritis has fixed her jaw so tight that Michelle Johannessen, 35, of Maryborough can now only speak through clenched teeth.

A previous operation failed to fix the problem and now her dentist cannot reach her decaying molars.

Ms Johannessen's hopes for a normal life were pinned on a jaw reconstruction operation scheduled to happen at the Royal Brisbane and Women's Hospital last week.

New upper and lower jaws, worth more than $20,000, had been created and specialist surgeons were to perform the operation, believed to be the first of its type in Queensland.

Arriving at the hospital on Monday, however, confusion reigned and on Tuesday the operation was cancelled.

Ms Johannessen said a staff member told her no beds were available and a CT scan had to be postponed.

“I asked if I was allowed to go and was told I could and they didn't need me back until 11am the next day,” Ms Johannessen said.

“When I went back just after 10am they said I was in trouble, that I'd discharged myself and, because of that, the operation was cancelled ... but how could I discharge myself when I was never admitted? No beds were available.

“The hospital just said to go home and they'd call me.

“I have to admit I was a bit emotional. Mum had driven to Maryborough from Gayndah to look after my four kids. The whole thing took a lot of planning.”

Professor Frank Monsour, the director maxillofacial unit at the Royal Brisbane and Women's Hospital, said Ms Johannessen's surgery was cancelled because she did not follow pre-surgery instructions.

“She left the hospital despite being advised to remain onsite and fast for surgery,” he said.

“This is a demanding surgical procedure, the success of which demands compliance from the patient to pre and post-surgical instructions and protocols.

“There were beds available at the hospital on September 27 for a pre-operative procedure that was scheduled for September 28. Her surgery was scheduled for September 29. She was allocated a bed in Ward 8A North.”

Professor Monsour said Ms Johannessen was instructed not to leave the hospital.

“The patient required a pre-surgery CT which unfortunately had to be postponed. It was rescheduled for the next day. Ms Johannessen then left the hospital and because she had left the hospital against medical advice admissions staff believed she had discharged herself.

“She was told to go home and advised the hospital would be in touch with another CT appointment time.”

Ms Johannessen said a previous operation to insert an artificial joint in her jaw had failed.

“It didn't work and slowly the bone has grown over and caused my jaw to seize up. It's closed right up now.

“I was embarrassed and didn't want to tell anyone but now I'm at a point where I need help. My teeth are playing up and the dentist can't do anything. If I vomit, what happens?”

Ms Johannessen was diagnosed with juvenile arthritis about five years of age and was featured in Women's Weekly at age 12. She still bore the scars from the many leg operations she has undergone since then.

“Arthritis in children was relatively unknown back then and the magazine did a story to make people aware,” she said.

“I've been in and out of hospitals most of my life and know what the procedures are.”

Professor Monsour said the hospital had now contacted Ms Johannessen and told her the procedure could still go ahead.



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