What life was like before
My name is Kirsty. I am 33, I am a stay at home mum and I live in Devon with my husband and 3 year old daughter Graicie. Life before my CSF leak was fast paced including working full time, keeping fit including swimming each day, planning long distance cycles for charity, studying complementary science therapy at university and travelling around the world when pennies and time would allow!
How my Leak started
On 20th October 2014 life changed with the arrival of our daughter Graicie. After 20 hours in labour and Gracie facing the wrong way it was decided that an epidural would be the best way to deliver Graicie safely. Three attempts were made to place the epidural needle, unfortunately the needle had gone too far causing CSF fluid to leak out of the epidural site and no drugs could be administered. Graicie arrived an hour later along with the best cup of tea I had tasted but also accompanied with the worst head pain I had experienced.
Life changed with the arrival of our daughter. A perfect little bundle of cute! This was the happiest and hardest day of our lives...
Treatment for my Leak
I managed to get home after a day and night in hospital with the hope that the CSF leak would heal on its own after a few days of laying flat. This was not the case and 3 days after Graicie was born I was admitted back to hospital by the midwife for an epidural blood patch, Unfortunately after a few hours lying flat in hospital the headache still remained and the consultants felt that was all they could do at present and I was sent home to wait it out and hope for improvement.
The head pain improved slightly over the next few weeks but did not resolve fully so a referral from the GP for a blood patch was the next step. But a mix up with notes unfortunately meant long delays.. Fast-forward 14 more GP appointments, prescriptions of various drugs and 5 physiotherapist appointments. I requested my hospital notes. I managed to find out and see the consultant who performed the previous blood patch. 2 years had passed so various MRI scans were performed and cerebellar tonsil decent was noted. No leak was seen on the scan and my local neurologist gave me the diagnoses of migraines and to take paracetamol. All they felt they could offer was nerve blocks to try and mask the pain.
This was a low point for me and I was forced to give up work, studying a master's degree in nutrition and swimming that I loved. I felt that life had stopped. I had a course of hypnotherapy that helped a lot with the fear and sadness I was feeling of losing my previous exciting life. It taught me that life is still happening, I can be happy and to appreciate the good things in life .
Life in 2017
In July 2017 we found out we were expecting another baby and in August 2017 I saw a new consultant. For the first time I was filled with hope that there is a possibility my leak may heal, and if not, that a plan will be put in place for me .
- an exciting update!
So it’s now December 2021 and I am following up on my previous experience living with a CSF leak. At the time of writing in 2017, I had attended a private consultation. I didn’t mind paying the fee for the consultation, as the information I gained from that hour was so valuable to me in the process of trying to get better. When I attended this appointment I was 8 weeks pregnant. In the end it was decided to see how the pregnancy progressed and also how my symptoms would present themselves throughout the pregnancy.
Luckily for me as the pregnancy progressed I felt better and better and the symptoms started to reduce. This could have been because as the baby grew it then put pressure on the leak site, giving me relief from symptoms. Another reason could have been that being pregnant had healed the leak, as the body tries to heal parts of itself when pregnant (how amazing is that!)
The options were natural birth with no pain relief, or a caesarian section under general anaesthetic. I have EDS, so I opted for the caesarian section under general anaesthetic. I woke up with a perfect baby boy! It was a totally different experience from having my daughter and starting motherhood with a CSF leak! Over the next few days I waited for the CFS leak symptoms to return………… but luckily for me they didn’t!
I was able to look after my children without the constant pain I had experienced while leaking. I could breastfeed my baby boy, because I could sit up without pain and I could get on with life completely free of pain. I’m eternally grateful for this.
Fast forward to December 2021 - I have a 7 year old daughter and a 3 year old boy. We have a beautiful golden retriever puppy that we love to walk every day. I’m back in the swimming pool, swimming an average of 4 miles a week. I attend yoga and the gym each week. I’m also scheduled to go back to university in 2022 to study Nursing!