This Chiari thing seems to affect more women than it does men. Not sure why, nothing has been documented why, apart from the numbers.

Scott found us at the forum after his partner joined us to find out a little more about the condition.

Just like other people with Chiari, we seem to share a common bond right away, not only with each other, but with our partners too going through exactly the same things as you do.

I think Scott has opened his heart out to the forum and it has really helped a lot of people already, he may not realise that yet, but its great to see and I am sure it's doing him well too!

Scott has had a journey, and it's by no means finished yet.

This is his story in his own words.....

I been putting writing this of for long enough. So here gose. I appoligise for the spelling in advance lol my spell check still not working lol.

So it all started about 10 years ago. I started suffering from really bad head aches and my mood swings were really bad, it only took the smallest of things to set me off. Round about my 17th birthday i went to my GP n told him about the head aches and he said it was cluster head aches. 'nothing i can do' he said 'you'll grow out of them'. I continued to visit him over the following 6-7 years and kept leaving with the same thing 'you'll grow out of them'. Then when i was about 24 they stopped, i would get a head ache every now n again but no where near as bad or as often as i had been, great i thot, if only i knew.

It was when i started my driving lessons when i was abou 25 that i started to notice my feet were always stone cold but i put that down to using the peddles, Then came the problems swollowing and the blurred vision. I thot the probs swollowing were because i smoke little did i know that all of the symptoms put together was an actual condition. So i just put them to one side, ignored them and got on with it. I started to suffer from really bad back pain but again i brushed it aside and put it down to the fact that i was fitting kitchens and was constantly lifting up and down stairs.

Then came the 21st of april 2009, i was woken up at 5 o'clock on a sat morning with a blinding pain behind my right eye which then moved to my head and over that weekend i was very sick, i mean non stop and the pain just got worse. My football team were playing on the sunday after noon and every body said 'he'll be fine once the rangers game comes on, he'll brighten up' as i never miss watching my team for nothing but to this day i still couldn't tell you the out come of the game and thats when my mum and girlfriend started to think something was wrong. By this time i was working for the NHS wearhouse due to the credit crunch and me being me went to my work on the monday morning. Still in so much pain and being sick. By 10 o'clock that day i started to think something wasn't quiet right so i managed to get a half day and went to my GP. Now even tho at the back of my mind i knew something wasn't right i still went in there expecting to get some pain killers and sent home, boy was i way off.

It wasn't my usuall GP i saw as it was a last min appointment. I went in and told her what was wrong and about me being sick with the pain and she refered me straight to my local hospital for a scan. So of i went with my mum to Wishaw General for this scan but when i got there i was told i was being admited to which i replyed no i'm not i'm just here to get a daft scan lol if only. So there i was lying in hospital with trainee doc all round me doing the same tests over n over n over again. Then came a doc whom was a stomach surgeon and i'm thinking y am i not being seen by someone who knows about the head. He then did the same tests again, i swear if another doc asks me to follow his finger again i'll deck them lol. Eventually i was sent for a CT scan but after waiting over night they said it came back inconclusive and wanted to do a MRI, another night in hospital and i should say that i cant stand the places but the jags they were giving me were great lol god knows what they were but they did the trick lol. It was thur the 24th that a trainee doc was sent to tell me that something had shown up on the MRI and that it was a mild case oc Arnold Chiari Malformation Arnold what ? we asked but thats all she could tell us, her sugestion was to google it and i swear that was her words. She then said she was going to refer me to the Southern General to see a NS. Was giving a box of tramadol and sent home, i was ragging.

I spent the following 2 weeks rolling about the house i agony awaiting a phone call frome the Southern General to see the NS but it never came. And the reason it never came was because the stupid jouner doc never made the referal, the name of the doc she claimed she spoke to didn't even exist. I was eventuall re admitted to Wishaw after contacting Nicola Sturgeon the health sec who pushed for me to be seen again. Another week in there being treated like a dog, being sent from piller to post, not getting my pain killers on time, being left sitting in the loo with sick every where, it was horrid. I was told that a NS was coming to see me and talk about where to go from there. Then appeared that daft jouner doc again to tell me that the NS was unable to see me, basicly i spent another week in that god forsaken place for nothing and it turned out that they don't even have a NS in that hospital, ragging again, head ache getting worse and by this point i had all the symptoms. Mean while my mum and step dad had printed alot of stuff for me to read on the condition as no-one had told us anything about it cause they didn't know the first thing about it but one thing i do remember is the word MILD was being thrown about alot, tell my body its mild then. My referal was eventually made and within a matter of 2 weeks i was seen by my NS Mr Sangrea.

After speaking to him it started to sink in what i actually had and that i was going to need madger brain surgery. I was booked in for the end of july and that day couldn't come quick enough. I was 2 months of my work and climbing the walls but i knew i wasn't in any fit state to return even tho i wanted to so badly. The day came and of i went to the hospital excited at the thot of being pain free within a couple of days and again how wrong was i. I went for a full MRI the day befor the opp and had a talk with Mr Sangrea about exactly what he was going to to but even tho i was excited i was terrified. The night befor the opp i didn't sleep a wink, i lay breaking my heart crying the whole night. All the thots of what if something gose wrong, what if it dosn't work, nightmare.

I went for surgery first thing, 8 o'clock and i don't remember anything else untill i was in the lift back to the ward 6 hours later. You should have seen me, sitting up, singing songs as i was being wheeled back into ward lol. I was up walking around pulling my drip behind me and whisling on it like it was a dog, the nurses couldn't believe what they were seeing and they couldn't get me to sit at peace lol. I some how managed to ge myself changed out of the daft gown and into my pj during which i pulled my drip out trying to feed it through my top, bearing in mind i had just come out of surgery lol its funny to look back at now but the nurses had to get my surgeon up to ward to speak to my lol poor guy. He put me in my place for sure and by this point my mum, step dad and girlfriend were there. He told me that the next few day weren't going to be easy and man was he right. I hve never felt so much pain in all my life as i was constantly sick and that was putting presure on my head and back, my whole body was killing. After the sickness passed all seemed good, all my symptoms had dissapeared but about 6 days after opp i started to get pain in my lower back which went down into the back of my legs. Mr Sangrea asured me this was just blood bubbles that had slipped into the spinal collom and were just popping. I was sent home after a week but was told if i was sick again i had to go straight back over. The day after i was sent home i was sick a couple times but never told anyone, even to this day my mum n step dad dont know, bad scott, but just couldn't face going back into hospital or the food yuck lol. Since then thiongs not been great, i been in and out hospital as all my symptoms have came back, i had a lumber puncture in november and that came back clear and had numers scans but starting to get the feeling from my surgeon that he'sdone his bit and thats that.

Where i'm at now isto be honest, back at square one, I'm on some medication and morphen patches but they dont seem to do anything. I saw a phisyo again last week and she requsted i try a new machine called TSE but its just a stronger TENS machine and i tried it on tue and i've been very sick with a killer of a head ache since, its just started to settle down today. I'm on anti depresents as some days i just cant motivate myself to do anything and i think there starting to work.

I've tried to cut this down as much as i can as it dose go on a bit lol. I wasn't looking forward to writing it as its not the most positive story but i wanted to be honest and i have had a few tears doing it and re living it all again as it has been a long journy so far and it looks like i got a bit to go. Stiil keep thinking i going to wake up and it all been a bad dream but no luck yet. Even tho its ont the most positive story out there i do feel lucky having read some of the others and what you's have been through. I also feel lucky that i got the support of my family and friends and my girlfriend and i thank you all for standing by me through out all this and also that i found all you guys on this site. Even tho i only found it a few weeks ago the help and support i have received from yous is unreal and i thank you all from the bottom of my heart.

Think i rambled on enough onw and as i said its not the most positive story but it is honest and i felt i had to be honest. If anyone has anything they'd like to ask please do so. The only thing i'd like to add is that if there is ppl lurking in the back ground and need to speak to some one i urg them to do so. I know how scary it is as dose every one here but i only found this site few weeks ago and i wish i had known about it while i was going through my opp and befor hand as it has been a god sent, it really has, i cant thank you all enough, friends for life. I'm away to blow my nose and wipe away the tears now lol i'm so chicken hearted these days lol. Tc all of you thanks for taking the time out to read my story. Love to you all scott xxxxx