What life was like before

My name is Suzanne ... at the age of 39, I was very, very active. I had played so much sport since I was 6! I was the fastest 100-metre sprinter in the school, won tennis tourna­ments, swimming badges, and played football with the boys, and did karate. This carried on until I was around 17, and I was also a dancer. Then I started working and mainly did gym work, aerobics, and kick-boxing.

I'm scared of the future, I'm scared of being this way forever

When I was 25, my husband and I made the decision to have children, but unfortunately I wasn't blessed with conceiving naturally . We tried for years until the hospital decided it was our turn to try IVF. On our third attempt of IVF in 2011, I finally fell pregnant!

In July 2012 I gave birth to the most precious little boy in the world; my life changed for the better and I had this beautiful little person who was mine. I was in awe of him. His name is Finn. In the years that followed, Finn and I did everything together. I wanted him to inherit his Mum's sporty side! I was a very fit Mum, I'd go to work, come home at lunch time and clean up, then go back to work in the afternoon, then go the gym after work, collect Finn at around 6pm and we'd always do something together.

In 2016 we decided to try IVF again so that we could have another child, and so that Finn could have a sibling. We used all of our savings and went through IVF again. We couldn't believe it when in the May I was pregnant. I felt well during my pregnancy, but unfortunately due to a low-lying placenta, I had to have a C-section . The date was planned, 9th January 2017 .

How My Leak Started

Unfortunately when it was time for me to have my anesthetic, there were some issues with getting the needle in. Finally it worked and our baby was delivered very quickly - I cried with joy as I could now start to live as a family as I had longed for, for so long .

Unfortunately, my health then seemed to deteriorate rapidly, I was aware that I was feeling quite unwell and was taken back to the ward, and despite feeling this way, I was still discharged. A severe headache continued, and I returned to the hospital where I was told that I had a spinal headache. I was told that it would be better within 7 days and believing this, I declined a blood patch. Over time the headaches began to clear but I was left with extreme brain fog, full feeling and burning ears, severe dizziness, nerve pain, and all I wanted to do was sleep. I knew something was really wrong .

Treatment for my Leak

Thankfully the midwife realised how ill I was and I was admitted back into hospital. But I was repeatedly misdiagnosed, my MRI was clear, and despite numerous appointments and different medication, I was still unwell. Finally I stumbled across the CSF Leak Association and everything began to make sense. Armed with this knowledge and support, I was finally able to confidently fight my corner and another blood patch was arranged for me. I was unsure about the after care, but again found some very helpful information on the CSF Leak Facebook forum. However, the patch didn't work and again I was left battling and having to prove what was wrong with me. I suffered tremendously with anxiety and depression as a result of everything I was going through, particularly feeling that I was unable to look after my son. Unfortunately I was left with continuing symptoms which impact on my life dramatically. I have continued to battle and I am hopeful that I will receive a third blood patch, but in the meantime, I am due to have more scans.

Life after treatment

I very rarely smile, I hardly laugh. Finn tries to make me laugh but I'm always so tired. I feel numb. I think about the past and it crucifies me, I hear certain songs and they make me unhappy as I remember what I was doing when that song was released and I was healthy. Knowing that I'll never go on a slide, or push a swing or a roundabout or play football again upsets me. What hurts more is that Roman, our baby, will never get the chance to do that with his mum. He will never get to see me play football or how good I was at it, and how fast I could serve a tennis ball, or how hard I could kick box. I haven't been to the gym now for 2 years and that affects my mental state, as I look a mess. I'm always tired, I look tired, and every day is such an effort. The pain that this illness causes every day is horrendous. I'm scared of the future, I'm scared of being this way forever, but live in hope that I'm one of the lucky ones .

Suzanne's life now... 2022

I think I’m fully healed! Miracles can happen!

I’m back at the gym, I can play football & do weights again. I got a job working with special needs adults in 2019 and I taught sports sessions. I gained valuable experience and now I work in a high school as a Teaching Assistant.

Nowadays I rarely think about the leak, but it never fully goes away, as when I get a headache or get dizzy I do get scared. I got diagnosed with PTSD after my leak, but thankfully it’s now leaving me. Don’t get me wrong, I have pain which is mostly from nerve damage in my neck, which travels to my arms and fingers. My left hand often loses feeling (latest episode has lasted around 5 months), but I just get on with it.

I am forever grateful for my health and will never take it for granted. If you haven’t got health you haven’t got anything ❤️

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