Jules Gaughan

I come from a very close family and live in a small town in Lancashire. At the age of 60 I have been very lucky to enjoy good health. However, I did experience a severe vertigo episode in 2017, followed by less severe ones over the last few years.

September 2021 was a stressful time for me as my sister was very poorly. It was extremely difficult to get her the help she needed as Covid restrictions were still in place. One evening, during a family meal at a restaurant I started to experience a severe headache which made my eyes water. It continued over the next few days. I had recently received a Covid vaccination and as a result, attributed my symptoms to that. I started noticing that if I bent down the head pain became unbearable to the point that I was not even able to think straight. I also had tinnitus which I associated with the stress of my sister being unwell. 

In November I contacted my GP about the headaches as there was no sign of my symptoms abating. She checked my eyes etc, asked me if I ever woke up with a headache (no I never) and then referred me for a brain MRI. I had to pay for this privately. I am very claustrophobic but luckily I was able to have the scan in a seated position. The next step was waiting for an appointment with the neurologist. As the weeks progressed, my headaches worsened. The symptoms intensified greatly with any activity that involved bending down such as filling the washing machine/dryer/dishwasher and playing with the kids. I googled my nearest BUPA provider, selected a neurologist on the list and booked a private appointment with him.  

In July 2022 I attended my long awaited appointment with the neurologist. My husband accompanied me to all my appointments as I found it difficult to comprehend and remember questions asked. The neurologist took detailed notes about the frequency and nature of my headaches. He was also curious about any other symptoms I was experiencing but at this stage I was only suffering with the headaches. He looked at my MRI results and said that even though they weren’t of the best quality, the brain sag was clearly evident. Looking back now at the letter he sent me he actually said that it could be a CSF leak. He recommended a MRI of the complete spine and thankfully, offered me sedation for the scan which would help with my claustrophobia. I think I had five MRI scans in total.

My symptoms continued to worsen, and my uptime was considerably reduced. My new bedtime was 5pm! I had a full head & spine MRI in October 2022; this indicated an enlarged pituitary gland. Unfortunately, no leak showed up on the MRI and my doctor recommended a myelogram. 

The most alarming aspect of this whole situation was my memory had started to deteriorate badly. I was unable to retain any information from medical appointments, so someone always came with me. The only relief from the debilitating headaches was to lie down. Ibuprofen helped somewhat but I was forgetting how much I was taking. I had started to choke on my food and my balance was severely affected. I slept a lot, remembered little and used a very loud voice when I was speaking to people. All in all, it is safe to say that I was losing myself and my disabling symptoms were affecting every aspect of my life. I was physically present but mentally and every other way, I had ‘left the room’.  

The myelogram was scheduled for February and the plan was to scan the left side first. Unfortunately, some of the contrast dye escaped and hence the results were inconclusive. No leak was seen. The following week I went back to have the same procedure on my right side. Thankfully they found a CSF venous fistula at T5 -T6. I was elated that they had found the leak but my doctor informed me there wasn’t a specialist in the UK who could perform the embolisation procedure that I needed. I was very lucky that a surgeon from Belfast was coming over to England early in March to operate on another patient. It was decided that he would also operate on me that day.

The day of my surgery March 8th finally arrived. The procedure took five and a half hours and was performed through the groin. The CSF venous fistula at T5 -T6 was embolised. Within 10 minutes of returning to the ward I knew it had worked. I had no pain, my mind was clearer and my brain felt like it had been reset. After spending years dealing with severe cognitive issues I was ‘back in the room’, able to speak without forgetting my words. I spent two nights in the hospital and when I returned home my family was delighted to see me look and feel so much better. My energy levels returned, and I was once again able to play with my grandchildren. I have not experienced any residual symptoms and even a scan three months later showed that my enlarged pituitary gland had returned to normal.

My two year CSF leak journey was very traumatic not only for me but for my entire family and friends. I realise how blessed I am that the treatment worked for me. Every day is special and I enjoy the simple things like spending time with my grandkids. I will continue to celebrate the day I was healed. March 8th is the day I got my life back and I will be forever grateful to my surgical team and my family for their support. I am always available to offer words of support to those who are still suffering from this debilitating condition and chat to them about my journey.  I hope that my success story gives people hope. Your CSF leak can be fixed and you can return to living a normal life.