Help Ashleigh get lifesaving treatment

My name is Ashleigh, I'm 34 years old. I have two incredible children Layla (7) Noah (3).

I had a normal busy fun hectic life. Enjoyed my job and creating fun memories with family and friends. However this has all been taken away from me.

On the 25th July 2023. I had visual disturbances. I called my doctor who advised i seek medical attention at the Eye Casualty. I attended and had the awful long wait ahead. Had lots of tests and was told my eyes are perfect, however he was concerned it could be my brain. So he ordered a CT scan and gave me a letter to take with me. A lady who had been waiting in the same room also had a letter and we both got chatting and was sent down together. I had my CT scan first followed by the lady who i had met in the Eye Urgent Care Room. She had Optic Disc Swelling!

After i had the CT scan the doctor confirmed all is well and i am able to go home. But advised i will receive a call in the morning to chase up on how i am doing. I felt so relieved nothing sinister was going on.

The next day 26th July 2023. I received a call from the Surgical Day Stay Unit. We need you to come in for a Lumbar Puncture... I asked what is this for... the lady didn't know either...... so i requested someone to call me back who knew the answers! A doctor called me and said i may not need one but they would like to see me. So i headed back to the hospital and my Auntie came with me.

I was greeted by a "Stroke Doctor" i was very confused, the place was absolutely chaos! He said due to your findings we need to do a Lumbar Puncture, however it can cause a "Headache" so we need a CT with contrast this time. I said i do not want a Lumbar Puncture if it causes headaches! Anyway i agreed to CT with contrast. Had that done as was back waiting..... CT all clear and nothing bad going on. I was super relieved.

The doctor was nowhere near to be found.

I was greeted by another doctor and she said we need to go ahead with the Lumbar Puncture due to Optic Disc Swelling! I said I don't have that! That's not me! She said oh well we have this on your notes and we need to rule out IIH! (Idiopathic Intercranial Hypertension).

She checked and said we still need to do this test! So of course i trusted the "Professionals".

I was taken into a room, bedside. She numbed my back, and placed the needle in. At this point she had students and unfortunately one of them fainted!

My pressure was absolutely normal (ofcourse it was!)

I was made to stay there for 10 minutes. And was rushed out to wait in the waiting room for 5 hours!

Lastly i was seen by a Neurologist.... he said ohhhh you are the Optic Disc Swelling interesting case! I proceeded to say errmmm i don't have Optic Disc Swelling and i have told your colleagues all day! So he did alot of tests and confirmed you DO NOT have "Optic Disc Swelling" hmmmm and we have done a Lumbar Puncture..... we shouldn't of done that!

28th July. Wake up and go downstairs to make breakfast for my 2 children. My head pain was horrendous, never ever felt anything like it. I called my partner screaming in pain holding my head.

Heading off to A&E, was seen by a Urology Doctor!!!!! Explained what i had done! She replied ohhhhh this is a Migraine... have some Sumitriptan and be on your way.... i knew this was not the case i felt something was seriously wrong!

Back and fourth via ambulance, no one knew what to do with me! I said could this be a CSF leak! They looked at me and said ohhh no this is a normal low pressure headache after a Lumbar Puncture (low pressure headache) is a CSF leak!!!! They said that is very rare and does not happen here!

I was sent home and told to remain flat and drink Coca Cola and Coffee! And to use a bedpan at home!

I was screaming in agony. I couldn't eat, shower. I was absolutely petrified. I thought this was it. I will die like this!

Finally after calling PALs and writing a complaint to the hospital Cheif Executive i was told to go straight to hospital and I would be admitted onto a ward!

As we turned up to A&E they had no clue who I was and what to do with me!

I couldn't stand up as the pain in my head would be so severe. I had mouth ulcers, coldsores, I was pale and absolutely frightened.

Still no further forward, the nurses found a bed for me, but everyone was completely blindesided as to why I was coming in. My family tried to contact the Cheif Executive and the Matron of A&E... of course no answer.

After 5 hours waiting in absolute agony I was sent to a ward. I really thought this was it i was going to get the care I really needed.... how very wrong was i.

I was left in a side room, the ward was chaos and dirty.

At this point i was still waiting to be seen by a Neurologist!

No one came to see me and i really needed some pain relief. I called for the Nurses and asked for some. They said ohhh has the doctor or Neurology not been round yet? I said no! Unfortunately we have no notes or instructions on medication for you, so we are not able to provide you any without instructions! I was screaming..... screaming in agony. It took for me to call my Mum and Partner to bring me in some pain relief...... i was in a hospital..... how can i not have pain relief.......

4 days had past and the Nurses were rude. They couldn't find a vein as i was so dehydrated i lost 2 stone within a week due to stress and anxiety.

I was neglected and left untreated... i was bruised by untrained nurses who tried to take blood from my upper arm...... they said i refused treatment when I didn't. Luckily my partner and best friend were there to witness all what happened to me.....

I finally saw the Neurologist and he was rude, ignorant and vile..... he dismissed my symptoms and said this is all normal post Lumbar Puncture!!! You have a Post Dural Puncture Headache (this is a CSF Leak!) which is what I said from the start... but when I said CSF leak he denied this and said that is very rare and this does not happen at this hospital!

After some tests and moved to another ward which by the way was a Gastroenterology ward not Neurology!

I was once again left without any pain medication because the Neurologist forgot to add the list to my notes. So once again i had to call my partner and I was screaming feeling scared and alone....

The Gastro team of doctors (not a Neurologist) came to see me in the morning and told me nothing is wrong and they were going to discharge me.

At this point I was completely suicidal.... no one is going to listen to me.

As i got home, all my symptoms were driving me insane. I have Tinnitus which was overwhelming, headpain when standing, i couldn't eat a thing, dizziness and I was in full panic mode.

The next day i couldn't cope.... no one believed me not even my family at this point, it's not a CSF leak Ash it's been confirmed by the doctors. I felt hopeless and completely alone. I went into full panic mode, i wasn't myself. I reached for a knife and tried to take my own life.... i can't do this anymore... my partner called an Ambulance. I was taken to another hospital..... i didn't want to go near another one..... i was left for 12 hours..... they looked at my scans from the previous hospital and dismissed me. However they contacted the Crisis Team within the hospital to come and see me.... hours had passed and no one came to see me. It was chaos everywhere. I was under the care of a young girl junior doctor who was so rude and had no compassion or understanding about patient focused care.... she was talking about me and staring getting annoyed as to why i was still there. She came over and said we cannot look after you anymore and the Crisis Team will be hours! My partner refused and said we are staying put!

The Crisis Team eventually showed up and I was given Diazapam to calm me down. They couldn't believe what had happened to me. And they were so quick to do a referral for me and I was sent on my way.

The journey home was awful, I wanted to jump out of the car so many times I had such an overwhelming feeling inside me i just couldn't control it.

I could honestly go on forever but fast forward to the 10th December 2023. I am still fighting for treatment.... i was seen by a "Specialist" hospital which i thought would be my journey to getting fixed and looked after... how very wrong was i again! Ashleigh you have a low pressure headache (Post Dural Puncture Headache) this is a CSF Leak.... i cried I knew I had one all along.... however..... the blood patch protocol here is blinded!!!!! The Neurology team knew i had found the CSF Leak Association and had spoken to top doctors in America and London... who's advise was to get a blood patch under image guidance.... sorry that is not our protocol here.... I said ok can you transfer me to a CSF leak Specialist hospital? Unfortunately that's something we do not do here, however I can provide you with a letter and you can do all the work!

I am now having to fight for my life to get treatment, if a CSF leak is left untreated it will cause more neurological problems or even worse death! 5 months i have been fighting for treatment.... i have two beautiful children who need their Mummy back. I can no longer care for them or myself. I can no longer cook a meal, go for a walk. Some days i cannot even shower or get dressed. I have been left in such bad conditions my body is giving up. My Mental Health is so bad and most days i honestly do not want to be here. But i am here still fighting, fighting for my children and fighting to be seen and heard and to get the treatment i so rightly deserve.

My ONLY option from here is to go private and with little funds, I feel this impossible but without pursuing this, Im left bed bound. To see a Private Neurologist in London, an initial consultation costs around £300-400 and on top of that travel expenses and possible hotel stays as travelling causes me so much pain. Any treatment of course will be in excess of this figure.

I have never asked for anything but please can you all fight for me and help me get the treatment I need. I want my life back, my children need their mummy back.

I wanted to also thank a fellow leaker Naomi Cornish who set up Leaky Café. We meet virtually online every Wednesday and share our thoughts and feelings. But also have alot of fun and laughs. From Quizzes to Origami to anything to take our minds off our unfortunate situations. Here is the link. Please do take a look https://csfleakycafe.uk/

Learn more about CSF leak here…

https://m.youtube.com/watch?v=cspOWNC3Q7k