Living with a CSF leak

PATIENT STORY

When she suddenly developed a constant nose drip, Smita Kotecha had no reason to think she had developed a cerebrospinal fluid leak – even when a colleague joked it could be fluid leaking from her brain.

I first noticed symptoms in December 2023. Initially, I thought I was coming down with a cold or the flu, as I had a runny nose. I didn’t think much of it, but then friends and family started commenting on how long it had been going on.

Then, one of my work colleagues said, as a joke, “You must have brain fluid dripping out.” I’d never heard of such a thing and laughed it off.”

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Then, one of my work colleagues said, as a joke, “You must have brain fluid dripping out.” I’d never heard of such a thing and laughed it off.

My nose was constantly dripping, and I couldn’t control it. It was embarrassing at work or when I was talking to someone. It was also inconvenient – if I was cooking, I was constantly wiping my nose and then having to wash my hands before I could go back to cooking.

Discovering the cause of my symptoms

I visited my GP in February 2024 and explained that it had been going on for months, so they referred me to an ENT specialist. He examined my nose but couldn’t see anything, so arranged a CT scan.

The CT scan was just across the midface of my cheeks and nose, not higher up. The results came back at the beginning of March; they had found a nasal polyp on my left cheek and thought this was the cause.

On the NHS, the waiting list to remove the polyp was a year, and I knew I couldn’t live with the symptoms for another year, so I decided to go private.

My insurers gave me a list of ENT specialists to contact, but no other guidance. I didn’t realise that within the Ear, Nose, and Throat specialty, some consultants only focus on one specific area. The first specialist I saw couldn’t help me and explained that I needed to be more specific and that it was related to my nose.

This was incredibly frustrating, but the dripping suddenly stopped as quickly as it started. It was the end of March, and I just thought, whatever it was, it’s gone, which is great, so I didn’t take it further.

Then in June, it started again, and I asked the private insurance company to give me a more specific list of consultants to choose from. They gave me a choice of three, and this time, I looked into the recommended consultants in much more detail so I could feel I was making the right choice. I decided that Mr Annakan Navaratnam was the best person to approach.

Getting the diagnosis of CSF leak

I saw Annakan in July, and at this point, I still thought the polyp was causing the nasal drip. However, Annakan arranged a laboratory analysis of the fluid that was dripping from my nose and also a CT scan of my whole head. That’s when they found an opening above my left eyebrow. The lab test further confirmed that it was a leak of cerebrospinal fluid.

It was a real shock to get this diagnosis. I first thought, oh my god, we were laughing about this at work.

Annakan explained that I was susceptible to meningitis so I needed to have a meningitis jab as soon as possible, but it was safe to wait and have the operation after a holiday I had planned.

In terms of the CSF leak repair operation itself, Annakan explained everything in great detail. He told me exactly what the procedure was going to entail, how long I was going to be under sedation, how long it was going to take, how long I was going to be in the hospital, and also what to expect from the recovery process.

This made it much easier, as I knew what to expect. My family knew how long I was going to need care. I work full time, so it helped to tell work exactly what was going on as well.

The day of the CSF leak repair

I went in the morning, but the operation didn’t take place until late afternoon. Annakan had requested that this particular dye be at the hospital when the operation took place, but the dye didn’t arrive until the middle of the afternoon.

Although the polyp wasn’t causing the nasal drip, Annakan also removed it after sealing up the hole on my brow.

After the operation, I was very dopey but not in any pain. I had to sleep sitting up on the first night, but I was so drowsy that it didn’t bother me. It was probably good that the operation had taken place so late in the day.

I wasn’t allowed to eat anything hot or spicy for the first couple of days. Everything had to be lukewarm – even tea or coffee. They didn’t want me to get sweaty or have anything that caused my nose to drip.

I was discharged the day after the operation. I didn’t feel any pain in my face, but to block the hole, they had used a bit of muscle from the outside of my upper thigh. The only discomfort was from where they’d taken that tissue out and stitched it up. They did a great job on it, and you can barely see the incision.

Annakan suggested I take three to four weeks off and more if I felt I needed it, but after three weeks, I was fine going back to work. In fact, after two weeks, I was working on my laptop at home.

I’ve just had my penultimate follow-up appointment with Annakan, and everything seems to be healing well. I’ve had no more dripping since the operation.

I would recommend Annakan to anyone with the same issue. The operation obviously went well, but he was also really good at explaining everything. My other advice is take time to do your research as best as you can into specialists who are recommended to you.