From a routine run to a medical mystery

It was in the beginning of 2025 when Hollie, who is in her forties and a keen runner, first experienced symptoms. “I started having hearing issues. It sounded like I was underwater and it was very loud. It was bizarre.”

Hollie went to her GP, who gave her sprays and other treatments to try, but nothing helped. Hollie was also getting migraines after going for runs, but, as the weather was getting warmer, she assumed these were caused by her not drinking enough.

After a particularly long run, Hollie felt terrible. The following morning, when she tried to get out of bed, she felt excruciating pain. “I had severe pain in my neck and thought I may have injured myself when I was running,” Hollie explains

However, two days later, Hollie’s symptoms worsened. She was stuttering and struggling to talk, unable to find words. Not only this, but she was also feeling sick and falling to one side. “It was almost stroke-like and I knew that something really wasn't right,” says Hollie, “so my husband drove me to A&E.”

After blood tests to try and find a cause for her symptoms, Hollie was given morphine to help with the pain in her head and neck. “Every time I laid back, it would improve things slightly. I had a CT scan and was told that I was fine and that my symptoms were due to a migraine.”

However, Hollie’s symptoms persisted. On a second visit to the hospital, she was again told her symptoms were caused by a migraine. It then reached the point that she was unable to stand and Hollie went back for a third time. This time she saw a student neurologist, who thought that Hollie might be suffering from some pressure issues in her head and recommended an MRI and a hospital stay.

Hollie was told her pituitary gland was slightly enlarged, which can cause headaches and vision changes. There was also a family history of migraines, so this was likely to be the cause. She was given migraine medication to take home.

Worsening symptoms

Despite following the doctor’s advice, Hollie was in agony. Being upright caused her so much pain that she was now crawling. Hollie returned to the hospital and an MRI was arranged for a few days later. At this point, Hollie was losing her sight. She was getting flashes in her eyes and her vision was blurry. 

After the scan, Hollie was told she did have pressure issues in her head, which were causing her brain to sag. As a result, she would need a blood patch. 

A blood patch is when a small amount of a patient’s own blood is injected into their lower back. The treatment is used to help severe spinal headaches caused by a leak of cerebrospinal (CSF) fluid. 

However, the blood patch treatment was delayed. Hollie says: "Everyone in the hospital was disagreeing about who was going to do my treatment. It was incredibly scary. No one had any experience of what I now know was a spontaneous intracranial hypotension caused by a CSF leak."

The leak of CSF was lowering the pressure in Hollie’s skull. This drop in fluid levels meant that Hollie’s brain had lost its natural cushion and was sagging downwards, which was causing her debilitating symptoms.

Eventually, a consultant anaesthesiologist agreed to carry out the blood patch. After the procedure, Hollie’s speech improved and she was able to communicate. However, the other symptoms remained.

Once back home, Hollie’s symptoms got worse. The hospital told her to go to her GP, who, unable to help, called the hospital. When the neurology team got back to Hollie, she was told to get her blood pressure checked.

Desperate for a proper diagnosis, Hollie decided to see a specialist and used her corporate healthcare insurance, which she has through her work.

A thorough diagnosis

"I booked an appointment with Mr Sayal at The Wellington Hospital, because I noticed in my research that he’d done a lot of work with the CSF Leak Association. When he called me in, I stood up and collapsed, so he got me straight onto the bed."

Mr Sayal had all of Hollie’s scans in front of him and couldn’t understand how she had got to this point, as the CSF leak was clearly visible in her scans.

Mr Sayal arranged for Hollie to have a sequence of MRI scans carried out using various contrasts to give a complete picture of her brain and spine. Hollie then had a CT myelogram. This advanced diagnostic imaging test uses a spinal tap (lumbar puncture) and contrast dye to produce highly detailed images of the nervous system so the source of the leak can be found.

Hollie returned to The Wellington to see Mr Sayal for the results. He told Hollie the leak was coming from the T9 nerve root and explained the treatment options. One option was for Hollie to have a fibrin glue patch to try to seal the leak, but the chances of success were fairly low. Another option was spinal surgery and, as Hollie’s symptoms were so debilitating, she chose surgery.

"I can’t stress enough how scary that part of my life was," explains Hollie. "I'd had doctors tell me they couldn't help me, so Mr Sayal was like an angel," says Hollie. "He was incredible."

Hollie's operation took place in October 2025. During the operation, Mr Sayal found that Hollie's dura mater, the tough outermost membrane that protects the brain and spinal cord, had spontaneously split and was essentially inside out. Mr Sayal had to correct this, and used clips, glue and a patch to hold the dura mater in place. Hollie’s back was then carefully sealed with staples.

After the operation, Hollie had to stay in bed and lie completely flat for two days. Very gradually, over the following days, her team started to increase her bed upright and by day four she was allowed back on her feet. Just six days after her spinal surgery, Hollie was back home.

A steady and supportive recovery

Hollie's surgery was a success - a scan after the surgery revealed that her spine was completely sealed and the pressure issues had resolved. Although Hollie’s speech, cognitive abilities and low-pressure pain when upright were immediately better, the complexity of the surgery and her time spent bedbound meant that Hollie’s spine remained stiff, and she’s continuing to rebuild her strength and mobility with physiotherapy.

While Hollie's surgery was successful, she was still experiencing severe headaches as she continued to recover over the following months. She has since been diagnosed with post-SIH headache disorder with a chronic migraine phenotype and is having Botox treatment to help manage her symptoms with her neurologist.

"The recovery is ongoing and I'm still not quite there, but I wouldn't change anything," she says.

Mr Sayal is working to raise awareness of the condition so that fewer patients are misdiagnosed, as Hollie was. "My husband and kids have all met Mr Sayal and everyone loves him," says Hollie. "He is clearly very passionate and just wants to help people. He told me he could help me and he was very honest about my recovery. He told me it would take about a year, and he’s been true to his word. From my first meeting with him, I knew I was in safe hands and felt my trust in a doctor start to come back. His patience, understanding and expertise in this field has helped give me my life back and no words can truly define the feeling behind them"