Friday, 5 June 2015

Chiari blog: What is wrong with me?

Hello again!

This is part two of my chiari blog series. If you'd like to see part one, please click here.

So, in order for you to fully understand why I am so eager to ‘plug’ the UK awareness month for Chiari Malformation and Syringomyelia I think it is only fair for me to give you some background into what makes me, me. Here's how I found out that I have Chiari Malformation and how it has been explained to me.

**Disclaimer: I will not disclose the names of hospitals / professionals involved in my care. Please be aware that everyone is different and this blog is not written with the intention to scare or upset anyone. – This is an honest account and reflection of my personal medical experience. **

You might well have read the “about me” and the “reason that I write” pages at the top of this page but until now I have been very sketchy about the conditions that I live with... I hate them. Like, REALLY hate them and it’s never easy to spill all! Stick with me on it though because it’s all going to be here today. Well... the main bulk of getting diagnosed anyway. Here goes.

April 2012(background)
I was enjoying my job as a teacher. My absolute DREAM job, working in the early years. It was challenging but the rewards were great. I actually found the teaching bit the easy bit! I found the staff room politics the worst bit (and paperwork the annoying necessity) but I had a really supportive Teaching Assistant and I had the attitude that as long as the children were learning, thriving, laughing and playing it did not really matter about the politics or how many times I would have new (in the tatty hand me down kind of way) furniture dumped into my classroom to be another hazard for my precious little dots. It’s a good job the site manager was a lovely kind of chap, all I needed to do was give him the look and he’d accidentally put it in the wrong room (HA – dream team!). Anyway, it was during work one day that I started to get a really bad headache. I'm used to them because I've had migraines since I was 8/9 years old but this was worse. I knew it straight away but I ignored every warning that my body was screaming at me! I didn't have the usual flashing/dancing stars that warn me of a migraine - it was strange, like I had been spun around on a watzer then stopped suddenly. It didn't last for too long at first. Maybe a couple of minutes at the most and it eased. I chose not to say anything because  I was sat down and the children were all in their free flow play, like I said, it eased so I thought it was nothing to worry too much about. It happened again but this was a bit later and quite a lot worse. I HAD to say something. I mean, what kind of teacher would I be if I didn't think of the children’s safety? I ended up going home to sleep it off thinking it must have been a Migraine. At that time I still lived with my parents (Just). Dan and I were engaged and had been given the moving date for our first home together. That happened to be the weekend after this “episode”. When I woke up I felt worse. Now, if any of you have ever had a migraine I bet you usually feel better after pain medication, a really good sleep in a dark room and probably after a whole load of vomit (sorry for the detail – I said I would be honest)! Well, all of that had happened and I felt worse!

Cue trip number one to the doctor!  Diagnosis: stress! – I bought that although I didn’t feel stressed. Newish job, first teaching job, house move... exciting but yeah, stressful too I guess. Prescription: two weeks of rest – no work (BUMMER-I was in the middle of goldilocks week and the whole topic was bears... I’d planned EVERYTHING including a teddy bears picnic)!

After a few days of still feeling rough (and having done a house move without lifting a finger other than to provide drinks and take photos ) I was visiting mum and dad. I was in so much pain with pins and needles that mum told me I HAD to go back to the GP. I hadn't registered or realised that every single time I was with my parents for the previous couple of weeks I had mentioned that I had pins and needles. I genuinely thought I had pins and needles until that moment when the sensation at the top of my arms had gone all weird and as if someone was touching my arm through a thick wet suit or something... most bizarre.

Cue trip number two to the doctor (I won’t keep this counting up by the way – I lose count after this one). This time at the doctors I ended up seeing a GP who I had never seen before. I cannot begin to tell you how lucky (reading that back and knowing what is coming seems too strange) I am to have ended up seeing this “returning to practice” GP. Alarmingly thorough with her investigations, having looked closely into my eyes and taken my BP both the old fashioned way AND with the computerised machine she got out her glossy thick book and explained that she hasn't worked as a doctor for a while so just wanted to check something out. *cue stage one panic* She was, on the other hand, absolutely calm and wonderful. She made a call through to the senior GP who came through to her room within a minute or two with a separate BP machine. *cue stage two panic*. They had a medical chat where the senior GP was kind of testing what the returning GP thought, he checked everything she had done and together they agreed, in one word, HOSPITAL *cue full on panic*! I had gone on my own. I was now this independent wife to be with a house and Dan was on his way home from work. The returning GP asked me if I was ok to drive to hospital they were expecting me and handed me this letter to give in at A&E reception. I said yes but the truth is I wasn't ok at all... I rang Dan and agreed to meet him first so I had him with me. He wasn't far away anyway.

In short the A&E experience resulted in a long, uncomfortable wait; a doctor doing all of the checks that the GP had done and saying “We have seen something so we will be referring you to a neurologist but you wont die over night”. Yes that is exactly what he said! Well, that’s a relief! I ain’t gunna die but I don’t know what is wrong!

By the way, I’m sorry if I’m waffling. I am trying to be
 accurate for you and also break it up into chunks.... stay with me.

Things got BAD I ended up being so bad that my sister thought I had had a stroke. I woke up completely unable to speak and my movement was far from “normal”. As soon as I sat up in bed it was as if something was squeezing down the back of my neck really hard and pressing my shoulders (just typing it out is bringing back scary memories). An ambulance crew came to the house to this “migraine patient” and took me down to A&E. I had a CT scan and some other tests and quite a lot of drugs pumped into me too... my parents were on holiday at this point and we hadn't started our strict regime of note taking so it’s quite cloudy for me. I know that Mum and Dad got back just in time for me to squeeze the hell out of mums hand as I had a lumbar puncture done (this was to rule out meningitis and they discovered that I had got Intracranial Hypertension - this is basically excess pressure in the skull). I can’t remember the exact facts and figures though. I hadn't seen the neurologist at this point. I hadn't even got my appointment through!

Neurologist day! - the start of religious note taking! (Highly advised for anyone going to hospitals)
He went through the CT scan and the results from the lumbar puncture. He ordered some MRIs too and prescribed Acetazolomide and Ammitryptaline to help with migraine type headaches and the hypertension. He also said I should remain off work until things were settled with the medication.

I hadn’t taken two days worth before I was back in hospital. Once again an ambulance trip for an episode similar to the previous one. The paramedic crew stated that I was having a “typical migraine” despite Dan and my parent’s telling them that I was under the neurologist. Lumbar puncture number two happened. It was after visiting time so a nurse from New Zealand was given the job of holding my hand. The registrar that did the LP this time was not a very good shot... I still have the scars from where he missed – 5 times! He was very apologetic though and got his boss to come and do it in the end. The nurse had little nail marks in his hand when it was all over where I had gripped – woops but he still came and said good morning the next day with a NZ magazine AND some stunning photos of the landscapes near his old home (he could tell I needed cheering up whilst I was flat on my back and not allowed to sit up after the bodged LP). Whilst I was on the Emergency Admissions Unit (EAU) I was sent for a CT scan and an MRI scan. My neurologist came to see me and explained that I will be staying in for a bit longer while they carry out more tests because he felt that there was something that needed to be figured out but it might take time and thorough, methodical testing. I was then moved onto the general admissions ward. Well, I was actually moved onto an overflow ward where I met the nicest and kindest lady I have ever met. Nurse B. I was in that hospital room on my own for 3 weeks having test after test, MRI after MRI and Nurse B was there every single moment with me! Well, when she was on shift! She used to come into my room on her break and read my wedding magazines that mum used to bring in. We had pretty much planned my wedding between us (in our own way) and spent thousands haha. She gave me the idea of internet shopping for the big day! It gave me something to do! Occasionally we’d have a lunch date and I’d give her a bottle of Lucozade and a chocolate from my stash that I’d been given and we’d pretend we were somewhere swanky! It works wonders for a pick me up! The ward that I was on wasn't a happy ward to be on. There were quite a few deaths in the 3 weeks that I was there. In that respect, I am glad that I was the furthest room away from anywhere but on the other hand, the families used to gather outside my room (at the end of the corridor there was the family room and the door was by my room). It was so, so sad and I remember asking for headphones because I just couldn't  cope after a while so I’d have music playing all night so I could sleep.

Day of the news
So after 3 weeks of all of these tests and some really uncomfortable bedside “meetings” with general admissions drs doing the rounds (I will not go into the nitty gritty of those). My lovely neurologist came and explained that one of the radiographers had picked something up on an MRI called an Arnold Chiari Malformation and he’d sent the images off to the neurology team at the big hospital in the city. As a result, they had called an emergency meeting and I will be transferred to the big hospital either later that day or the next. It might seem strange but at that moment my main worry was not hearing this long, complicated word (it was written down and we were told not to google it en route... does anyone actually do that?) my worry was missing saying goodbye to nurse B. She had been an angel whilst I was in that room and she was on a different ward! I didn't even think about what the neurologist had actually just said to us! – I don’t even remember the explanation of it... It all kind of happened so fast. Three weeks of waiting and wondering were over in pretty much two sentences.

Well, nurse B found out somehow that I was leaving and she came running up to my room with the biggest hug for me. We have stayed in touch to this day and she even managed to come to my wedding! The ambulance arrived to transfer me to the big hospital in the city and it was only the same flippin’ crew that took me into hospital in the first place three weeks beforehand! When they saw me they remembered me. They also apologised without us saying a word! It’s so easy to judge a book by its cover isn’t it?! They were a really lovely couple of paramedics actually. They were a husband and wife team and they were so intrigued by the notes that the hospital had given them for the journey. They had never heard of Chiari Malformation before and the 'husband' of the two wrote it down to do some research (I really hope he did do some research). The 'wife' sang to the radio! It took my anxiety away!

There we have it. The story of how I found out what was “wrong with me”.  I’m sorry that there are a lot of words and not a lot of images. The story continues but I'll write another post about the big hospital in the city.

If you would like the chance to win a special hand-made (by me) cuddly Elephant (it was the most popular choice when I asked on the trust forum and my family and friends). Please visit my just giving page and make a donation. (Every penny will help) and for every donation made, I will be making a small heart – these will be stuffed into the Elephant.  In the comment section please state that you would like to be in with the chance to win. *please note that anyone that wishes to remain anonymous will unfortunately NOT be entered into the draw*. The draw will be made on Wednesday 1st July 2015 at 7pm GMT. REMEMBER, YOU MUST LEAVE YOUR NAME IN ORDER TO BE IN FOR A CHANCE OF WINNING!  (if possible leave twitter/facebook/instagram details too so I can easily contact you if you win).
Find me on
Facebook here
Twitter here
Instagram here
Love and hugs

1 comment:

  1. Hey you! Three weeks in hospital - I would have come and seen you - then again I guess at the time you didn't necessarily know how many days you were going to be kept in. Nurse B sounds lovely - i'm so glad that there was someone there to look after to y you when "visitors" weren't allowed to be.