My name is Donia Lindo and I am 30 years old. My CSF Leak journey started April 2016, when I was 17 weeks pregnant.
The first 15 weeks of my pregnancy were plagued with morning sickness and when I hit the 15 week mark I finally got some rest bite and thought that was it. Then the headaches started. Starting with a pulsing sensation in my head when moving and progressing into excruciating head pain and having to be horizontal within a week. From then on, my journey was a living nightmare. I made multiple visits to the doctor, ED and out of hours services, only to be told that it was a pregnancy related migraine and the strongest pain relief I would get is paracetamol. Eventually I was admitted to hospital after spending 4 weeks in bed. This was when I met my neurologist (my saviour!). She recognised the symptoms and suspected a CSF leak! She requested an MRI scan of my brain and a lumbar puncture. She advised me that she would be on holiday the next week but upon her return she said she would come back and see me and discuss the results.
The week she was on holiday was the week I had the MRI and my lumbar puncture.
By this point I had been horizontal for 5 weeks, unable to move my head, photophobic, suffering from phonophobia and clearly ‘dry’! Following my Lumbar Puncture my rhomboid spasmed and unfortunately left me even more debilitated than when I had entered the hospital. To my horror the next day I was also told to go home, take pain killers and drink plenty of fluids! I was not allowed diazepam for my muscle spasm in my back because I was pregnant so I literally could not move my head or arm. I did not sleep the whole night as the pain was unbearable.
A junior doctor came to see me and apologised and said I didn’t have to go home, but I was completely reliant on other people to do the simplest of tasks. My mother stayed the night to help me as the wait for the call button was around 20 minutes. The next morning the ward nurse marched into my room (I had my own room as it was the only place they could switch of the lights). She forced me to stand up, tears were streaming down my face due to the pain, and she said “of course you will feel dizzy, you have been laying down for weeks”. It was then I realised that they don’t understand what’s wrong with me. It was then I made the decision to discharge myself, against my family's wishes. My twin sister got me a wheelchair and a sick bowl, I wore my blindfold and she wheeled me out. I was in agony. Being sick all the way home. I finally got in my bed and my fiancé gave me round the clock care. From back massages, bed washes, feeding me, helping me crawl to the toilet. It was awful, but I felt so much more secure in my own home with people who knew and understood what was wrong with me.
My neurologist returned from holiday and was horrified that I had been sent home! She rang to apologise and told me to return to hospital as soon as I could as she wanted me to have a blood patch. I returned the following day excited that I would finally get some relief. I was so worried. By this stage I was a bag of bones as I had lost so much weight from morning sickness and being unable to eat. Heartburn is bad enough being pregnant but mix that with trying to eat all your meals lying down and it resulted in me having complete loss of appetite. I was so worried about my baby’s health!
My MRI was all clear and I was diagnosed with an idiopathic CSF leak. I got instant relief from the blood patch! I was elated! On top of the world! I was also naive and didn’t receive any advice regarding after care. I returned to work 2 weeks later, picked up a terrible cold with a hacking cough and 6 weeks later I was leaking again. My neurologist gave me her telephone number, so I called her and she got me in for another blood patch and again, I had instant relief.
It was decided that I would have further tests once I had given birth to try and find the cause of my leak.
The rest of my pregnancy went without incident, CSF incident that is. I did end up in hospital with a chest infection and ended up on crutches with SPD. I regained weight and went about my normal life as best as I could while being pregnant. I had meetings with obs consultants and anaesthetists who all decided they were happy for me to go ahead with a normal delivery. Their theory was that some women get CSF leaks from epidurals or spinal blocks and they would normally agree it was safe for natural delivery for their next birth.
I travelled to Scotland to have my baby. My labour lasted 2 and a half days. I had an epidural the later part of day 2. This had to be fiddled with as it didn’t work properly. Due to me failing to progress I had an emergency C-section. They decided to give me a spinal block as they were not happy with the epidural. My daughter was born healthy and I was discharged from hospital 2 days later.
12 days after giving birth I leaked again! I was still in Scotland. I went to the local hospital and the doctors contacted my neurologist and she agreed for me to have another blood patch. Instant results again! The doctors were not convinced that the epidural/C-section was the cause of my leak as they said, I should have shown symptoms 3 days later not 12.
I had an out-patient-appointment for an MRI of head, neck and spine and the results were all clear.
5 months went by and wait for it….I leaked again! This time I think the cause was doing exercise. Rather than taking it easy (because I didn’t know), I went back to how I used to train. 5 days a week. A variation of swimming, circuits, running and cycling. This time I had a MRI of my brain with contrast another blood patch, instant results!
A month later I was leaking again!! This I think was because my house had been subject to a flood and I had to move. (Stress overload and having no family around meant I probably had to lift things I shouldn’t have). This time I was given a CT Myelogram (which was clear) and an LP (opening pressure 16). It was around this time that I decided to start Vlogging. I felt that family and friends did not understand my condition and I didn’t really understand it either, so wanted to reach out. You can check out my Vlog at the link below and follow my story further there.
A month later, I slipped on a wet floor and I leaked again!!! My neurologist again arranged a blood patch. This is blood patch #6 if you have lost count! again instant relief.... and my fingers are tightly crossed that this is 'the one'!
Thank you for taking time to read my story! Sorry if I lost some of you along the way. Since I have been Vlogging, my eyes have been opened more to the extent of this horrible, debilitating condition. I feel I am lucky that I have such an understanding neurologist and employer. It makes me sad that other people are not being treated the same! I want people to know that it has been a very steep learning curve for me. The main thing I wish I knew was how to look after myself after a blood patch as I was never given any information -my knowledge has come from looking at this fantastic website and being part of support groups. I feel that my Vlogs have helped me with not only my journey, but others too! I have had lots of private messages and I am happy to share my experience if it can help somebody else.