Linda’s Journey from Dementia to Recovery

Hello, my name is Linda. I’m a proud Nana originally from Birmingham, now living in beautiful North Wales. My CSF leak journey began back in 2018. As I only have pockets of memory about what happened to me during those years, my husband and family helped me to piece together my story. 

In 2018, I started feeling tired and weak, often falling asleep for a few minutes throughout the day. I also found it difficult to remember things, I felt confused and eventually I had to give up my job as a teaching assistant. 

I was finding it difficult to function with everyday life and my general health deteriorated.  

Some of my symptoms included: 

• Forgetfulness and memory loss
• Slurred speech
• Weakness 
• Confusion
• Poor mobility (I needed a wheelchair)
• Tinnitus
• Sleeping most of the time
• Difficulty swallowing
• Loss of appetite and weight
• Difficulty reading and writing
• Poor hygiene, which led to gum disease
• No upright head pain, just pain at the base of my skull and slight neck pain 

We saw my GP, who suspected early onset dementia and referred me to a clinical psychologist. My GP proceeded to create a care plan for me.  

After a few visits to the psychologist and many memory tests, he felt I didn’t meet all the criteria for a dementia diagnosis. Through his professional contacts in America, he knew of a man who had the same symptoms as me who was wheelchair bound. He was at first diagnosed with dementia but after further testing, he was eventually diagnosed with a CSF leak. This man received treatment for his CSF leak and made a full recovery! 

My wonderful psychologist referred me to the Queen Elizabeth Hospital in Birmingham for CSF leak testing. In 2018 an MRI revealed I had brain sag, subdural haematomas, and fluid buildup in my spine. Clear signs that my symptoms were due to low CSF pressure and that I had a CSF leak. 

In January 2019 I had a blood patch and made a full recovery. I actually felt "normal", it was an amazing feeing! 

Unfortunately my recovery lasted just 2 years and I fell ill again. I had 2 further blood patches in 2021, with no improvement. At the Walton Centre, further MRIs and ICP monitoring showed low to negative intracranial pressure. I had another blood patch but it was unsuccessful. 

In 2022 a CT Myelogram revealed multiple perineural cysts, the largest one at T2/T2. Things weren't looking too good for me but in April 2024 I had a dynamic CT Myelogram with contrast. I was the first person to have this procedure at the Walton centre as it was so new to the hospital. I was a little scared, but the team were wonderful and really looked after me. 

The results were very clear, I had multi-level leaks in my spine, the largest leak being at T1/T2 where the largest perineural cyst was. There was a discussion about doing a targeted blood patch firstly at T1/T2. 

Unexpectedly, while waiting for the procedure, I started to improve and feel quite well again. During a video consultation, my neurologist noted the vast improvement in me. She explained that CSF hypotension disorders can go into spontaneous symptomatic remissions but there was a need to remain vigilant because I had multiple leaks. She planned to discuss my case with an MDT (multidisciplinary team) to decide how to take things forward. 

Because I was so well and functioning normally, I didn’t go ahead the with the targeted blood patch. I've been well now for 18 months, but I remain under my neurologist’s care. I can call the Patient Initiated Follow-up (PIFU) within the next 18 months if I start to feel unwell again. Even though I'm functioning normally, I still have a reminder where my largest my largest leak spot is. I still get soreness/slight pain in T1/T2 area and slight stiffness in my neck. But it doesn't affect my life, I'm just so grateful I'm alive and well! 

When my CSF leak began, my symptoms were so unusual that no one suspected the real cause. I didn’t have the intensely painful headaches most people experience, instead, my signs were subtle and confusing. I want my story to remind GPs that even when symptoms don’t fit the textbook, a CSF leak could still be the answer. Please don’t assume, as happened to me, that these signs point to something like early-onset dementia. Investigating and referring for wider testing can change lives and, in some cases, save them. 

What happened to me is a real miracle and I know the prayers of friends helped me.  

I hope my story encourages doctors to investigate the possibility of a CSF leak and to refer patients for wider testing — even when, like me, their initial symptoms are unusual and do not include the intensely painful headache. It’s so important that these symptoms aren’t assumed to be the start of early‑onset dementia.

Thank you for taking the time to read my story. Writing this journey hasn’t been easy, but I believe if even one person feels less alone, or one doctor looks beyond the obvious and considers a CSF leak, then it’s worth it. To anyone struggling right now: please hold on. There is hope and sometimes, hope is the first step toward healing. Recovery is possible, even when it feels out of reach. 🙏 

Bless you all, 
Love Linda x 💙