Haven't walked for 2 years after Lumbar Puncture

Hi all! Hope you're well! My story...

I went into hospital July 2014 with many symptoms and I was eventually diagnosed with a brain tumour, but they wanted to perform a lumbar puncture to rule out any other illnesses and certain types of tumours. The first one was done on the 10th July in Walton. I am almost certain that it was a Junior Doctor who carried out the test - alone without any kind of consent from me (I found out he was a Jnr afterwards) and also made me sign the waiver before allowing me to take the Diazepam that I was given because I was terrified of needles. I overheard a few days later that it takes at least 90 minutes to kick in but he made me take it and literally started the test straight after that. No more than 5 minutes and he was in my back and I was screaming the ward down (Now I know that this pain was ridiculously bad compared to the one I had the following day from a Senior, it was even worse than brain surgery!) 3 attempts and 25 minutes later, he had to give up because he couldn't get the fluid and I was all screamed out. I was in a ridiculous amount of pain and didn't go anywhere that day, I was already admitted to a ward before this so I just stayed in the bed all day. I had another the next day from a Senior and he was in and out in under 5 minutes, no pain whatsoever. This is when I realised that the first one was not normal.

2 days after the first LP, I went to get up to go for a shower when the lady on the bed across from mine asked me why I was "walking funny". I hadn't noticed, but every few steps my knees were buckling underneath me like "jelly legs". Everyone said I walked like Mr Soft from the Softmints advert (and after watching it, I agree haha!) but the Doctors said I'd be fine in "2 days". 2 days later and it was just getting worse and more frequent, and they said "you'll be fine in 3 more days". It was going down, fast and in the end, underneath every single step I took was my knee buckling underneath me. This went on and on until the point where they wanted to discharge me but a physiotherapist had to come up and agree with them, but he told them that he wasn't happy that I "walked into the hospital but leaving in a wheelchair". The Dr didn't care and sent me home anyway. 

They had refused to give me a wheelchair from there so I asked who do I ask for one then because I couldn't walk around, falling and stumbling when I went out with friends or food shopping...

Their answer to me?

"I don't know, try an old charity shop or boot sale or something"

Now that - is horrific.

Over the next month I was in and out of hospital every few days and Walton is quite a way from my usual home of Anglesey, North Wales so it was difficult with my family having to come up and see me at 19 years old losing her walking and struck ill with a brain tumour. 

In the middle of August, I went to wobble my way into my gran's house when I fell to the floor. I tried getting back up but I couldn't. From that day onwards I never walked again. They tried full leg plaster casts from my toes to the very top of my thighs, but my knees still dropped.

I feel extremely lucky to be on my 1st "brainaversary" this month, officially one year out of my brain surgery in Australia and also that I am able to get around on my knees by crawling and I'm lucky I have always been flexible because I can get around easier. I thank my lucky stars that I can still do things for myself, but that doesn't mean it doesn't bother me. I see my neurologist and doctors every couple of months but they are no closer to giving me a diagnosis, but Drs in America, Australia and Cardiff have ALL said IT'S BECAUSE OF YOUR LUMBAR PUNCTURE.

So I would love to know your stories if you'd be willing to share! Or any tips or thoughts, I would greatly appreciate

Beth x

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