STUART'S STORY

My name is Trevor Stuart Griffith, my friends call me Stuart, and I'm a 48 year old single male living in Eccles Manchester, and this is my story.

My name is Stuart and I'm a chiarian.

I'm going to start my story in the 1990s when I was about 30-32 or around that age. Going to the doctor was something I did not do that often, in fact it was very rare so when I started to get headaches and visual migraines I just put that down to my life style, work hard and play even harder, out every night with my mates on the beer having late nights and starting work early in the mornings, this was 7 days a week, so to me it was self inflicted and that was confirmed when I eventually did see the doctor. I don't blame the doctor as he was just going off my life style and my symptoms; the cure was the usual, cut down on the drinking and stops burning the candle at both ends. The headaches eased for a while, so I though the doc was right.

Over the next couple of years the headaches started to increase in severity but never seem to last long, the visual migraines only came in when I was tired (still get those but not very often).

I was one of those people that liked my holidays abroad, in the winter it was skiing, never really a summer holiday person but I do like winter sun and that's when I had my first bad turn or seizure. It was one of my holidays in Tenerife, I and one of my mates were in lanzorote and it was boring, so we decided to get a internal flight to Tenerife where friends from the local pub were staying. On the third day I suffered the seizure when I dived into to pool and the symptoms were a very acute headache, pain in my lower neck and across my shoulders, this was very painful but the pain only seem to last about 15 minutes before it had completely gone, I still felt a bit groggy from the experience but it was a very hot day and the pool was cold, so in my mind it was self inflicted and I should not have dived straight in but cooled down first, how wrong was I, that happened in about 1995, A few months after that the feeling had gone on one side of my head, but I still didn't tell the doc.

Let's go to 2000 and onwards.

I was working at a bakery in Trafford Park and you know how it is, you can't rely on public transport so I used to walk the 5 miles everyday, my shift was regular 2-10 so it wasn't as though I had to get up early and it only took 50 minute to cover the distance. I was doing this for a couple of years before I started to notice the stiffness returning to my legs, it wasn't that bad and after about twenty minutes sitting down in the canteen it would ease off, but that was just the start.

I am writing this in a way that I hope other people can relate and trace back to when they first started to show even the smallest symptoms no matter how insignificant they might have seemed at the time.

About 18 months had passed and stiffness in legs had become worse and so has my balance, but not as bad as it is going to get.

February 2006 was the year that I shall not forget in a hurry. There I was sat in the canteen talking to one of the blokes that worked in the same area as me, that's when I had the mini stroke or a T.I.A as they are more commonly know by the medical profession, Lol kept asking if I was alright, well I didn't realise that I was slurring my words I just felt a bit funny with numbness in my right arm and ringing in my ears and bit groggy, it must have lasted about 10 minutes if that so I went back, well I tried to go back to work but ended up with one of the managers taking me to hospital and that's when I found out I had had a T.I.A.

The usual tests were to follow; E.C.G, Blood Pressure, a chat with the doctor and my eyes were tested and then they gave me a couple of paracetamal and told me they would make arrangements for me to see the stroke specialist and sent me home.

About 8 weeks went by before I finally went to see the specialist at Hope Hospital (what a name for a hospital HOPE) and that's when four words started to give a headache VAIRIANT TO THE NORM.

Once again I neglected to tell doctor everything and even missed out the episode from the holiday a few years earlier and it doesn't help when they are trying to diagnose you. The first thing they did was to take blood and then I went to see the specialist, we had a chat and I told him about what had happened that night at and he arrange for some test to be done,

1. The C.T scan on my head and neck to see if anything was wrong in that area VAIRIANT TO THE NORM.

2. The ultra sound to check for blocked arteries CLEAR

3. The M.R.I the more powerful scanner on my head and neck to find the VAIRIANT TO THE NORM, and guess what that came back as, VAIRIANT TO THE NORM. I did speak to the specialist after this scan to see what was going on, all he could tell me was there was something there but there not quite sure what it is.

4. The second M.R.I this was about 8 months after the first M.R.I due to me moving and some mail not being forwarded. This time the scan was of my lower back, back, neck and head guess what the result was; wrong it was chiari 1 malformation of the skull and a cervical syrinx of the spine!

Imagine the look on my face when I read that in the letter, me straight on the phone to my sister to tell her what I had been diagnosed with and yes it did scare me, I didn't have a clue what it was, never even heard of it, so I had my sister look it upon the internet and she found the university of Missouri site with all the information, from the symptoms to the operation to the after care, all of which I made me feel whole lot better, well what I mean is not better but knowing something about the condition was a help.

In October 2007 I went to see the stroke specialist for the last time so that he could confirm the contents of the letter which he had also a recommendation that I ask for a referral to see a Neuro surgeon, someone who new more about this condition and had performed the operation before. Now the stiffness in my legs had got worse. If anyone's as old and remember a film called reach for the sky about fighter pilot Douglas Barder who lost both his legs in a plane crash before the war and had them replaced with tin legs and learnt to walk and fly a plane again, but if you've ever seen the film and the way he walked, that's how I was walking but not as fast and with balance problems.

It's now February 2008 and I'm going to see the Neuro surgeon Mr Cowie who from what I have read is a top surgeon and consultant who you can read about on the web. In a way I suppose I'm lucky as my sisters' husband is an O.D.P which stands for operating department practitioner I think, and has worked in the same O.R with Mr Cowie. I went in to see Mr Cowie who put me at ease as he explained what had shown up on the scans, he then answered all my questions before I could ask them (I wrote them down and they were still in my pocket) only two questions I was able to ask were; have you ever performed this operation before, which he had only a couple of days before, and how soon could I have the operation, the answer to that question was the waiting list is about ten weeks. I then sign the forms and went straight for my pre-op test. It's now a waiting game for the operation date.

I had moved into my sisters before the operation as my condition had got worse and I wasn't able to do many of the thing I used too and I was really bad on my legs. I knew that I would have to find a place that suited my needs, that is no stairs and near to the shops. The flat was decorated and the carpets laid before I went into hospital.

The date has come in the post for my operation, 15th May 2008 and I go into the hospital the day before on the 14th, I'm getting a bit nervous and apprehensive, don't like Hospitals. My last meal if you can call it a meal, you know I can't remember what I had but I do remember that sign going over my bed NIL BY MOUTH that was at 10 pm and my op was the next day at 1 pm. My weight going into hospital was 9.5 stone.

On the 15th two O.D.Ps came to take me O.R, but I was quite surprised the pre-op nerves had gone and I was quite calm. I don't know how long I was in there for but I do remember waking up just as they were pulling that tube out of my throat and the next time I saw a clock it was 5.30pm and was I hungry.

The next 8 days were spent trying to get some semblance of my former self, I should have listen to Mr Cowie when he said you won't get better over night it going to take time, in other word don't try to run before you can walk ( these word processors are great). Opposite my bed was a Zimmer frame and that was going to be my means of transport to the outside world and a bit independence, some exercise, fresh air and a cig, yes I know it's bad for your health but so is chiari. It was 5 days before I had the completely got rid of the Zimmer frame, now I had to conquer the stair before the physio would give me the all clear to go home. It would be another 2 days before I could manage the stairs on my own and I was given the all clear to go home all together I was in hospital for ten days and I'm a terrible patience but the nurses, the ward manager, and everyone who works on the Head and Neck ward at hope hospital and I have nothing but praise for there skills and professionalism. My weight leaving hospital was 8.5 stone; I did NOT like the food.

24th May 2008 and leaving hospital and going to stay at my sisters for a few weeks, just in case anything goes wrong. On the way home every bump in the road felt like a massive crater, it was like every time we drove over a bump someone was hitting me over the head with a hammer, of course my sister didn't realise this until I told her and yes she did try to avoid them. I was to stay there for about four weeks until I could do certain thing for myself, you know like cook, clean, do my washing and not last but for me very important to me at the time, wash my hair by myself ( there's not that much left ). Whilst I was there I went shopping for a couple of settee's for the flat, a bit stupid really that was the day after I got out of hospital and I should have been resting not trying to pretend I was ok. I found that getting good nights sleep is not easy; it's all about getting your head in the right position on the pillow and used to take me a while.

Everything is slowly coming together and I mean slowly, I'm just so exhausted after 5 or 10 minutes doing something, I can tell you that food taste better when cooked slowly.

Time to move into my flat, the headaches are still quite bad so I've made an appointment to see Mr. Cowie. I was having a few problems with food i.e. milk, eggs, tomato sauce, butter, margarine that seemed to be irritating my throat and bowel and sweat, I stunk, my bedding stunk, it was that bad I had to change my the day. I was like that for about 3 weeks. I went to see Mr. Cowie who arranged for a scan to check that everything was going the way that he expected but he had no explanation for the food, I also told him about how tired I was getting doing simple things like using the vac or cleaning the bath, but like he said don't try to push yourself too hard you've had major surgery and it's going to be a long slow road to recovery, in other words learn to walk before you run.

I had the scan then went back to see Mr. Cowie, he showed me the before after scans so I could see the results and understand what he was telling me, in fact I've just found the letter I received of Mr. Cowie from the appointment that I'm writing about, so to quote the great man himself.

We looked at recent scans which showed satisfactory decompression of the upper cervical syringomyella and decompression of the cerebrospinal fluid pathways at the foramen magnum. The tip of the cerebellum is no longer pointed and is now rounded and relaxed.

Unfortunately there has been very little improvement in his neurological function and I was sorry to have to inform him that this is likely to be the case in the long term. He should try to and undertake physical activity within the limits of what this allows him to do.

I also asked him about my lower back with it still being painful at times, what he said was, some bone is damaged so are the disc, the damaged nerves will only repair themselves up to about 30 %.

Since then I have had to go for a medical for the incapacity benefits department just to make sure I'm not on the fiddle. My headaches are still there but nothing like what they were, now I can cough, sneeze, and shout without the fear of a crippling headache knocking me of my feet. I still have problems with my balance and my gait, my walk is like a stagger you know, as if I've I to much to drink.

I'm going to end this with a bit of advice; learn to walk before you run in other don't try to rush your recovery after surgery, it will be long and slow and there's going to be just as many bad days as good. The good days will overtake the bad so as the British say keep a stiff upper lip.

I now weigh 10.4 stone, got a podgy belly now (shame on me he he).