TUH doctors raise awareness for rare condition after successful treatment

A Townsville woman who was suffering from debilitating headaches was reunited with the Townsville University Hospital (TUH) doctors who ‘gave me my life back’ following the diagnosis and treatment of a rare, underdiagnosed condition. 

Rose Kruze of North Ward, had been suffering from severe headaches for nearly six months before doctors at TUH were able to diagnose her with intracranial hypotension, a condition in which there is abnormally low pressure or volume in the skull due to a cerebrospinal fluid (CSF) leak. 

One of the causes of a CSF leak is a CSF-venous fistula, where the fluid that surrounds the brain and spine leaks into the venous system due to a hole or tear in the protective layers around them. Symptoms include headaches, neck pain, dizziness and nausea. 

“I had a fall and broke my arm, but didn’t hit my head,” Ms Kruze said. 

“Two weeks afterwards, I started getting a positional headache behind my eyes and forehead and the back of my head was also quite tender and couldn’t tolerate even resting my head against the couch. 

“I just put up with it for two weeks, thinking it was just tension and it would go away, before my husband sent me to my GP.” 

Ms Kruze initially presented at the Mater, where they found she was showing signs of brain haemorrhages and referred her onto the radiology team at TUH. 

Interventional neuroradiology specialist Dr Muhammad Usman Manzoor said the condition is often underdiagnosed and requires specialised techniques for diagnosis, with patients suffering from terrible headaches for months before the correct diagnosis is made. 

Doctors performed several myelograms (a medical imaging test that involves the injection of a special dye into the space around the spinal cord) and MRIs to diagnose and find the leak in Ms Kruze’s skull. 

“Intracranial hypotension, once diagnosed, can be managed by surgical ligation or endovascular embolization of the CSF-venous fistula,” Dr Manzoor said. 

“Once we found the source of Rose’s leak, we were able to offer her treatment via endovascular technique as it’s less invasive with a quicker recovery time and shorter hospital stay.” 

The endovascular approach performed on Rose involved catheters being navigated through the veins of the leg into the site of the fistula and a glue being used to close the abnormal connection. 

“After consulting with colleagues at Royal Brisbane and Women’s Hospital, we believe this may have been the first time in Queensland a CSF leak has been treated by endovascular approach,” Dr Manzoor said. 

Ms Kruze said she was elated when Dr Manzoor located the leak and booked her for the procedure the next day. 

“For six months I was really not me, I had brain fog, I felt hungover all the time, I couldn’t concentrate and couldn’t remember the simple, daily activities I was doing,” she said. 

“It’s been three months since surgery and I’m back to my normal self. 

“My husband, family and friends have all been saying, ‘it’s good to have you back.’” 

Ms Kruze said she hoped to raise awareness about CSF leaks because it was often under or misdiagnosed. 

“The crucial symptoms for me were the postural headaches,” she said. 

“I spent so much time lying down because every time I was standing or in an upright position the headache would come on. 

“It can often be underdiagnosed or passed off as a migraine.”