Wednesday, 1 June 2016

- Living life with Hydrocephalus - The story behind my scars.

On September 30th, 1987 I was born at 27 & half weeks. I was born so early, my lungs weren't properly formed & were therefore just a huge mass that didn't work. My placenta also came away inside my mothers womb, so I was actually born dead. Thankfully surgeons manage to get my heart beating again, but I suffered a 50% ventricular brain hemorrhage & it was a race against time to save my life. was born in Barrow in Furness, Cumbria, & after they managed to get me breathing & stable again I was then transferred over to Leeds General infirmary by ambulance were I was to undergo major brain surgery to get a vp-shunt placed in my head to start helping drain the excess fluid from my brain (hydrocephalus) which was caused by the brain bleed. The journey to Leeds was 3 hours long, to which a paramedic spent the whole time hand pumping air into my lungs with a bag to keep me alive because they were so fragile that if they had of used a machine my lungs would have quite literally blown up! Once I arrived at Leeds I had to have a procedure called a Shunt Tap that meant a needle was placed into the center of my brain to ease the pressure & release as much fluid as possible before I had surgery. I was only a few hours old when this was done. I then had to go through a 9 hour surgery to get the shunt placed into my skull so that it could do the job of draining the fluid. Altogether I spent 7 months in Leeds General Neonatal Unit recovering from a brain hemorrhage & having major brain surgery! I was one very sick baby, but I manage to pull through & I am here to tell my story. 

When I was 16 years old, doctors told were going to operate & remove the bottom lobes of both my lungs, but when they did xrays it was revealed that my bronchiectasis was spread right throughout both of my lungs so nothing could be done. I don't really know many people who are adults & live with this disease, I tend to know of friends who have babies with it, so I don't tend to talk about it. Today I am almost 29 years old, & although I have been left with severe lung disease for the rest of my life, & I also live with two fully working vop-shunts in my brain draining excess CSF Fluid (Cerebal Spinal Fluid) off my brain, I don't let things define or defeat me.. well at least I try. I live my life to the fullest as you really don't know what is around each corner. Ever since I was a baby, I have always had my mum by my side throughout all of my brain surgeries, so having to go through four surgeries alone, all on my own last year was really quite terrifying! of course though, my mum was constantly on the phone to my husband being updated, & she even phoned the neurology ward herself a few times especially seen as she knew exactly what it would be that they were doing! but I still cant imagine how hard it must have been for her being over 100+ miles away from me whilst I was going through all that on my own - I know it would break my heart if it was any of my children. They definitely don't call it "Mummy intuition" for nothing, if I hadn't of called my mum to have a winge about my headaches a few days before, & she hadnt of urged me to go to hospital, I may-well have not been here writing this today. I love my mum, & even when we are hundreds of miles apart she is still there, keeping me safe & looking after me. 

On Monday 26th January 2015, I phoned my mum for our usual natter, but I got talking about how i'd had a headache for almost 3 days & that an unusal lump had developed under my shunt valve & that it was getting bigger, I didn't think it was anything too serious to be honest, & I was just going to go to bed & then call the doctor in the morning, but the urgency in my mums voice actually scared me, she told me to call an ambulance right away & get to the hospital, so I did just that. when I got to A+E everything happened really quite fast, I was rushed off for a CT Scan, & within just a few hours I was face to face speaking to a neurosurgeon (Mr Thomson) who was telling me that my shunt had broken & blocked & that I needed to go down to theater straight away to have it fixed. He then left to scrub & a nurse entered to put a canular in my arm & I just totally broke down - this was the first time that I had ever done this alone, & 27 years old or not, I was terrified of being put to sleep. I was then taken down for my first lot of surgery at 2am early hours Tuesday morning, & then later that day, I was rushed down again (so 2 surgeries within 12 hours) because the shunt wasnt positioned properly so wasnt draining like it should of been doing. I was still suffering a headache, & by this point I had started to vomit too.  To be honest though, I dont quite remember much of what happened after that.... I was way too out of it & poorly, although the one thing I do remember is a nurse telling me that she was going to put me a cathetor in because I kept wetting the bed! o.O wtf? Wednesday morning rolled round & after 2 lots of surgery I was actually feeling quite good. although I was still having that pain in the arse headache so I just spent the day resting up & sleeping & if my CT scan came back okay on Thursday then I could go home. ONly on Thursday morning, I woke up feeling nauseousm I couldnt face eating & I could barely lift my head off the bed without vomiting, so I was placed on "nil by mouth" & monitored for the rest of the day which I spent either crying in pain or sleeping. (fun) at around 3pm I was taken for another CT scan, which revealed that my shunt had again blocked, so Mr Thomson made the decision that he was going to fix my shunt AGAIN but also place a second shunt on the left side of my head just behind my ear because one on its own wasnt handling the extra accumulation of CFS fluid & kept blocking under the strain. This meant that I had now been through 3 brain surgeries in as little as 3 days. I went down to theater around 5pm on Thursday evening & when I came back round properly, I was back on the wars & it was 1..45pm! I remember this so clearly because for the first time since being admitted on Monday I didn't have a headache! I kept telling the nurse,, I don't have a headache, thats good right? & thankfully she agreed. I slept right through Thursday night & was told it was the most peaceful the nurses had seen me! Friday morning I was gorggy & a bit dizzy from the drugs, but still no headache (yey) & I was starving! I totally demolished four pieces of toast, 3 cups of tea, & 2 bowls of cereal! I had another ct scan Friday morning & finally, it revealed that everything was working as it should be! so I was also told that if I was ready, I could go home later that day. I was discharged Friday 30th January in the evening & my husband & father in law came to collect me from the hospital.

I was back at home for 10 days,  & around day 6, I had noticed that the area around my stomach scaring had swelled, I asked a nurse about it when I went to have my head stitches out & she didn't seem concerned - or even arsed when I think back now! then on Tuesday 9th February, I sat on the sofa with my husband to watch a film & all we heard was a giant POP & suddenly I was soaked in fluid.. my husband joked at first & asked me if I was pregnant & if my waters had just gone.... I was literally dripping the scaring was leaking & it wasn't stopping, it was running like a tap!so again I phoned my mum for her advice & she said to go back upto the hospital, so off I went... again! as soon as I got there, I was sent straight up to the neurology ward where a ct scan & an xray was done, by this point I totally knew what was coming & that I was going back down to theater! great! my fourth operation in as little as 15 days! I was told that the tubing that runs from my brain & into my bladder had dislodged & was sitting just above my stomach cavity & so the fluid that was draining off my brain was then building up behind my scar & that is why it split. Had I not once again listened to my mum, & gone to the hospital it could have been very dangerous & had an infection got in there it would of had a clear run straight up the tube & to my brain! very scary. At 1am Tuesday morning I was taken into theater & whilst I was there it took surgeons 7.5 hours to fix me, but thankfully they didn't have to go back into my head & do a full revision & were able to just fix the tubes, my tubes are now stitched into a main vein in my stomach so that they cant pop out again! On Wednesday I was plagued with headaches due to them wiggling everything about & disturbing my tubes, so I spent the majority of the day sleeping, but then I woke up Thursday I was feeling loads better, I awt breakfast, I got up & sat in the chair & I even managed to have a little shower to freshen myself up! then when the doctors came round they said that if I felt ready I could go home - again! 

I have now beaten my personal record of surgery's on my shunt, I have been down to theatre 3 times before in just a few days, but never 4 times! I am now 16 months post op, & to be honest, its been hellish! I have not had a single break for migraines! I have been in & out of the Neurology ward a few times but nothing has shown up on scans to say anything is wrong, so I am basically living like this at the moment, I went to my GP last week May 2016) & I asked him to change my migraine medication because it just wasn't working anymore & the worst thing happened..... He has decided that it would be best all round if I am referred back to my neurosurgeon as from the symptoms I have given him, he doesnt want to prescribe me anything different just in case it is due to my shunts in slow failure. great) so I am now awaiting an appointment, spending the majority of my days sleeping in bed due to huge amounts of pressure in my head & migraines that come & go, nausea, serious memory loss & dizzy spells! oh how it's fun being me. 

One day is all I ask, just one day where I am headache free... is that really too much to ask? fingers crossed this appointment comes through soon, because I really am almost at the end of my rope... i've had enough! 

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