As a female driving instructor, and a good one, Louise Watson was much in demand around her hometown of St Albans. A stalwart of the profession in the area, and highly respected by her peers, she assumed the position as chair of the local driving instructor’s association. But as her reputation grew, her health suffered. What started as simple headaches turned into something far more sinister, beginning a chain of events that would test the medical profession and lead to a remarkable diagnosis.

 

At 51, Lou, as her friends and family know her, was at the peak of her career and worked hard. Keen to build on the successful ‘Louise Driving School’ brand she had created, and with an overflowing waiting list of potential clients, Lou started franchising the school brand. She barely noticed the increasing frequency of headaches, and when she did, she wrote them off as the inevitable consequence of the stress she had put herself under in her quest to achieve her career ambitions. It was a casual comment from one of her franchisees, Maria, who had become a good friend, that stopped her in her tracks.

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“You used to be such fun. Now we can’t even get you to come out,” Maria said to her. 

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Lou realised she had been cancelling her social engagements, prioritising the time that she felt healthy to work on her business. But that time was getting shorter, and Lou was taking to her bed for relief from her symptoms more often, and for longer. The headaches were by now accompanied by dizziness when she stood up, a further reason to stay in bed. 

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The first of many misdiagnoses was that it was an ear problem, but the conventional treatments for infection of the ear made no difference. Lou’s worsening symptoms forced her to give up driving tuition, and she relied on the much-reduced income from her franchisees to keep the business afloat. She couldn’t even get out of bed. Whilst she could achieve some level of comfort whilst lying down, any attempt to become upright caused debilitating pain. 

Lou’s GP was at a loss to understand what was going on. Diligently referring her for CT scans and specialist consultations. The best the neurologist could come up with was that she was suffering from chronic migraines. The strongest painkillers available made no difference. This should have alerted the specialist to a deeper underlying problem but, to Lou’s frustration, that didn’t happen. On six separate occasions, Lou’s GP was so concerned that she sent Lou directly to the hospital, but still, doctors found no diagnosis. On each occasion, the hospital sent Lou home.

Over a seven-month period, Lou showed remarkable resilience, remaining determined and keeping the spectre of depression at bay with the support of husband Ally and close friends Bloss and Jackie. The latter’s skills as a nurse were beneficial. The symptoms next progressed to loss of memory, impaired vision and ear piercing tinnitus. Doctors confirmed through further tests that her organs were functioning properly and that there was no cancer. Reassured that there appeared to be no threat to her life, she still asked herself, “Is this going to be my quality of life from now on?”

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Desperately worried about her best friend’s condition, Bloss took to the internet, determined to work out what was going on. Coming across a scientific paper about a relatively new field of medicine, she discovered a condition that appeared to match Lou’s illness. Sitting on the side of Lou’s bed the next day, Bloss read the list of the symptoms described in the paper. With Lou barely able to speak, Bloss suggested an alternative means of communication.

 

“I’m going to read out a list of symptoms, squeeze my hand when I say one you are getting,” Bloss instructed, reading out the list. Lou squeezed on every one. 

 

“This must be what you’ve got,” Bloss said, with confidence. “It’s called a spontaneous cerebrospinal fluid (CSF) leak. The fluid that surrounds your brain and goes down your spine is leaking out.”  

 

Lou took Bloss to see her neurologist.

 

“Well, it certainly seems to be feasible, but I’ve only ever seen a CSF leak because of a trauma. I’ve never seen it happen spontaneously before,” the doctor told them, writing a referral to a new neurologist.

 

This time, Lou took her team to see the neurologist. Ally, her mum, Bloss and Lou all went along, determined that this would be the beginning of the end of Lou’s seven month battle. The outcome of that appointment was an admittance to the National Hospital for Neurology and Neurosurgery in Queens Square, London. Lou remained an inpatient for two weeks while doctors ran tests and observed her before confirming the diagnosis. Bloss was right, it was a spontaneous CSF leak causing intracranial hypertension. In diagnosing the problem at 7 months, what Bloss gave Lou was a remarkable act of friendship and an incredible gift. 

 

“The average time for diagnosis of the condition is 18 months,” Lou told me. “A lot of patients are driven to suicide in that time.”

 

The successful diagnosis was a turning point, but it was far from the end of the story. Tracking down the leak and treating it would not be a simple task. The science and treatment of spontaneous CSF leaks was a relatively new field of medicine and there was no simple way to identify the location of the leak. It was like trying to find the tiny hole in the inner tube of a bicycle wheel whilst it remains inside the tyre. You can’t just extract a spinal column, immerse it in water and see where the bubbles come out. 

 

Doctors employed a range of techniques to ease the symptoms, including intravenous caffeine to stimulate CSF production. One dose equated to 48 shots of coffee. No wonder Lou didn’t sleep that night. Doctors tried the treatment three times, but the relief only lasted a few days each time.

 

A specialist diagnostic technique, known as a myelographic scan, was undertaken. This is an imaging test that uses a combination of X-rays, contrast dye, and a CT scan to visualize the spinal canal, spinal cord, and nerve roots. The technique allowed Lou’s spine to be analysed with greater accuracy, but It failed to find the location of the leak. 

With the science behind the treatment still being a rapidly developing field of medicine, all treatments were, to some extent, experimental. One of those treatments was a blood patch. This involved extracting some of Lou’s own blood and injecting as much of it as she could bear into her spine. 

 

“I’d never felt pain like it,” Lou told me. “I got 55 ml in before the pain became too much, which they told me was nearly a record.”

 

For 24 hours, the doctors kept Lou on her back, confident that the blood’s natural clotting agents would locate and fill the hole, similar to how Radweld repairs a car radiator leak. The doctor’s confidence was ill-founded. After only three weeks of relief, the symptoms returned and Lou was back in bed at home. Moving into the downstairs bedroom to avoid having to climb the stairs, she could barely make it to the bathroom across the hallway, twice passing out because of the pain. Whilst Lou now had a diagnosis, she was back to needing full-time care, once again relying on the love and support of Ally, Bloss and Jackie.

 

Lou’s great friend Christine even came to stay, to allow Ally to go back to work.​ "She shopped, cooked, cleaned and was also a great support for the whole family," Lou said. Her friends really were rallying around.

 

Next the medics came up with an alternative approach. This one was another blood patch, but this time injected halfway up the spinal column and comprising a mix of Lou’s blood and Fibrin glue, a biological adhesive more commonly used to stop bleeding. 

 

“I got to 60ml,” Lou said. “The doctor was confident it would work this time.”

After two days on her back recuperating, Lou could feel that she was on the road to recovery. Her health was returning to normal.

 

It was late in 2019 and despite the doctors’ advice that she should not go back to driving tuition, Lou had other ideas. Always innovating in her business, she acquired an electric vehicle, becoming the first driving school in the St. Albans area to offer electric vehicle lessons. Putting all her effort into marketing, Lou featured in the local paper alongside a picture of herself with her new car. Not up to working full time, she took on a few students. At this point, her business ran into a brick wall courtesy of COVID-19. They banned all driving tuition, putting the driving school into hibernation. Whilst this turn of events was damaging for the business, it provided Lou with time to focus on her health and fitness.

 

Lou’s health continued to improve, but 2020 was a sad year with the sudden death by sleep apnea of Nico, her friend, and one of her franchisees. At the same time, another friend and franchisee Maria suffered really badly with Covid, eventually leading to a stroke. Lou did her best to provide the level of care and support for her friends and their families that she herself had received from her friends during her illness.

 

Pleased with the outcome of Lou’s treatment, the specialists at the neurological hospital asked if they could use her medical records as a case study, enabling them to share the results for the benefit of other patients. Lou readily agreed.

 

“Everyone moans about the NHS, but honest to God they are fantastic,” she told me.

 

It would have been nice had that been the end of the story. Sadly, that wasn’t the case.

In December 2020, a year after Lou’s last spinal injection, the UK finally lifted Covid restrictions. Wrapping up warm against the winter cold, Lou put her two dogs on their leads and walked them to the dog groomers for their regular appointment. Setting off on the walk back home, she noticed the cafes were open, people were back out to work and there was a sense of excitement in the air. Things were getting back to normal. 

 

On a whim, Lou called her daughter Sam and arranged to meet her at the cafe for breakfast.

 

“I’ll give you a lift home, Mum,” Sam offered after they’d eaten.

 

“Thanks, but I’d rather walk,” Lou replied.

 

“Ok, well, don’t rush. If the dog groomer calls before you’re back I’ll pick them up,” Sam said as she headed off.

 

Lou started to walk home, still wrapped against the cold in her thick coat and wearing a wooly bobble hat. Suddenly becoming light-headed, Lou looked down at her feet, experiencing an unsettling feeling, like she was walking on air. Staggering from the pavement to the road, she blacked out and dropped to the ground. Passers-by rushed to Lou’s help, discovering her foaming at the mouth and with a severe head wound, despite any cushioning effect from her wooly hat. Lou had suffered a massive seizure.

 

An ambulance was soon on the scene and Ally was called courtesy of the emergency contact details on Lou’s phone.

In a curious twist of fate, it was at this moment that Sam drove down the road en route to the dog groomers. With an ambulance blocking one side of the street, she slowed down and glimpsed the patient being treated on the road. It was a coat she recognised. At that moment, she noticed her dad’s work van coming the other way on the wrong side of the road, confirming the thought taking shape in her mind; it was her mum who was being treated. Pulling over about the same time as Ally, they both helped Lou get comfortable and into the ambulance. With Covid restrictions still in effect, neither was able to travel in the ambulance.

 

The seizure was another major blow in Lou’s pursuit of full health. Back in the hospital, doctors placed her on a stroke ward, but tests revealed no evidence of a stroke. This time, the hospital discharged Lou with devastating news—they would revoke her driver’s license. She would need a year with no further seizures to get it back and there was no guarantee even of that . 

 

”That was probably the lowest point of the whole time,” Lou told me. “I couldn’t work, no livelihood, no income, no freedom. It wasn’t worth continuing with the business”. In February 2021 sold Louise Driving School. 

But there was worse news still to come. Maria’s health continued to deteriorate. Because Covid ravaged the health service and delayed MRI scans, Maria’s diagnosis of stage 4 ovarian cancer came too late. Maria died in May 2021 at 56.

 

Lou’s cognitive function, especially her memory, remained impaired for the next year, but it was unclear if this resulted from the seizure or the CSF leak. Doctors could not find a medical link between the two. Doctors administered dementia tests, revealing memory limitations, but the results did not show dementia. She was doing things like driving to the shops and walking home, forgetting that she’d taken the car. It was all quite disturbing.

With no further seizures, Lou got her driving licence back, and even kept her green badge, which allowed her to still teach, although that profession was no longer part of her life.

 

By 2023 Lou still didn’t feel back to full mental capacity, including episodes of dizziness, but she couldn’t put off the knee replacement she needed any longer and went ahead with the surgery. Despite suffering a Transient Ischemic Attack (TIA), often called a “mini-stroke”, and losing feeling in her tongue for a week, she persisted with her rehabilitation, swimming and going to the gym. 

 

Things still weren’t right. In a reminder of her earlier symptoms, she felt dizzy whilst swimming on her back. This is where Lou’s participation in the clinical trial paid dividends. Besides her normal annual MRI to check the level of CSF, they performed a CT myelogram again this year. As before, a multi-disciplinary team of neurologists and radiographers reviewed the results. This additional, more detailed, scan was what would finally be the key that unlocked the entire problem.

 

Soon after the scans, Lou took a call from her consultant.

 

“You are not going to believe this. We’ve found the leak on your spine,” he told her with a hint of professional triumph in his voice. It was a venous fistula.

 

“One of my veins had attached itself to my spinal cord and was syphoning off my spinal fluid,” Lou explained.

 

With the exact cause of the CSF leak now pinpointed, there were two options for surgery, one more invasive than the other. The non-invasive procedure would involve an operation that accesses the treatment site through a vein in the groin. Based on the data from a relatively small number of cases, the success rate was estimated to be about 80%. The more invasive treatment, in which the patient’s back is opened to provide direct access to the site, had an estimated success rate of 95%. In medical terms, the science around treating venous fistulas was very new; only a few UK doctors had performed non-invasive procedures, and even fewer invasive ones. Lou chose the non-invasive option. 

It was September 2023 when Lou went in for the operation, to be conducted by one of the UK’s top brain surgeons. As he explained the procedure to her, she identified a problem. He had anticipated placing Lou’s legs in stirrups to access her groin, but her recent knee surgery made his plan infeasible. 

 

“Ok, change of plan, I’m going to suggest that we go in through a vein in your arm instead,” he explained, “it’ll be the first time we’ve done this in the UK although I know they have successfully carried it out in the US. How would you feel about me trying that?” he asked.

 

“Yeah, ok, let’s do that,” Lou agreed.

 

It worked. The surgeon was thrilled with how the procedure had gone and was confident that it had been successful. But the rehabilitation process was still going to be a long one. 

 

“I was basically not allowed to do much at all for six months. I could walk, but not with dogs, no carrying of anything over 5kg, no swimming, it was very frustrating,” Lou explained. But after 3 months she was feeling really good, even sneaking into the pool to exercise her knee. About 5 months post-op, she began to swim, still experiencing some vertigo. At the 6-month checkpoint, Lou’s doctor asked her to keep a diary of any irregular symptoms.

When asked how she was feeling at her next major review, in October 2024, she realised she had written nothing in her diary for months. She was symptom free. 

 

“Your recovery has followed the pattern exactly as we expected based on the available studies,” Lou was told.

 

“So all of those symptoms I continued to have after the operation were normal?” Lou asked, “why didn’t you tell me what to expect?”

 

“Because you’re part of the study, it was important for us to find out exactly what was happening without your knowing what to expect,” she was told.

 

The entire experience, both what happened to her and the tragic loss of her two friends, has had a massive impact on Lou’s outlook on life.

 

“Since I’ve felt better, I’ve decided to live life to the full. To do everything I can for as long as I can, because I don’t know how long I’ve got. I don’t know if I’m going to be here this time next year.”

 

Doctors have never fully diagnosed the seizure, but they continue to monitor Lou annually, and she can contact the specialist team anytime.

 

“This is the best I have felt in six years,” Lou told me. “I am cured.” After all she has been through, they were beautiful words to hear.

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