What the hells wrong with you today.

What the Hells the matter with you today, Watch where your walking, Just think, What have you been doing all day.

Do these words sound familiar to any of you. These are the words some people here on the rare occasion but to me it is daily.
Some people find it hard to get to grips that maybe i don't feel well and that maybe i try my damn hardest to do what i can. I am not being lazy, i am not being clumsy , i am not ignoring you, i am not miserable, i am not being rude.

It is because maybe i am suffering and don't want to show it to others and i try to keep it to myself. I seem clumsy because i have trouble negotiating my steps and use all my efforts to keep my balance, I haven't done all the jobs you have asked because i have exhausted my self and i have needed to stop at intervals throughout the day to rest. Sorry i didn't think because my mind is not my own any longer and i feel vacant a lot throughout the day. I am not miserable, i am just trying my hardest to cope with the pain and maybe i am trying to keep it to myself as i don't want to burden you. I am not being rude, i just sometimes either feel like i don't want to socialise or sometimes i feel so drained that i just need to rest my body.

I know i am not alone with these comments. Sometimes loved ones try to ignore these facts as it helps them cope as well.
It is like a breath of fresh air when you get someone who really cares and is really interested in helping you all they can.
I had a couple that i know approach me the other day and took me to one side so others could not hear and ask me how i was as they said they could see how i had changed.
As usual, i said I am fine , don't worry about me. This is something i have become accustomed to as i don't really have anyone to listen to me and share my worries and concerns.
I felt deeply touched by this couple offering their help and a ear whenever i needed it. Whether it was genuine or not, the thought was there. So thank you ( you know who you are ).

That's where these blogs and forums help us all as we all share the same problems. That is why awareness is needed here in the UK as it people will understand the torment we go through daily.

If you was diagnosed with say Multiple Sclerosis, people would understand as it is widely recognised and there is help out there for those sufferers.

God bless you all and thanks for reading this.

Chiari Meet up

Hi everyone, just to let you know that i am organising a get together for all sufferers and partners/carers/family. I posted it on Chiari UK but this site seems to keep going down for some reason.
Anyway i have arranged for it to take place in Feb 2011 Dates either 19th Feb or 26th Feb which are both Saturdays. It will be in Birmingham in a chosen hotel just off Junction 7 of the M6 so its accessable to all. I have phoned a number of Hotels and have found some desent prices. Perhaps i could have your views on the dates so i can get it booked and the number of people who care to attend. please contact me via email daz.norton01@blueyonder.co.uk. I look forward to hearing off you. Meanwhile i will endevour to post it on the Chiari UK.

Chiari support forum down

Hi all, as some of you know the UK support forum is down at the moment and at a crucial time as well. I have contacted a few members and suggested we all use my forum Chiari care (follow the link above )for the time being so we can carry on our posts .
Please feel free to use it any time .

Darren

Chiaricare forum

Hi, just to let you all know, i will be shutting down my Chiaricare Forum sometime this year. I will let the subscription run its course and i will not be renewing it as this has shown to be unused. I Understand that Chiari UK forum is widley used and hoped that my one would also become popular. The reason for the failure of this forum is because of the lack of members.

Thank you to all who became members and i hope you continue to visit my blog.


Regards

Darren

My Story in the News

Hi all, some of you amy have read that i approached my Local Newspaper some time back ( The Birmingham Mail ) regarding my story. I had not heard back from them for months and thought that they had forgot about it, as they said they would contact me when i went to press. I attended hospital for a infusion study yesterday and my NS issued me with a copy of it whilst in theatre. I did not know it had been published.

It reads

BRAIN DISORDER DAD IN NHS WARNING

A Birmingham dad is urging the NHS to raise awareness of a rare brain disorder which was only diagnosed after he consulted US specialists.
Darren Norton from Great Barr fears more people in Britain could be suffering from Chiari Malformation (CM).
The 40 year old former construction Site Manager started having severe headcahes, vertigo,blurred vision, and numb limbs three years ago.
But his symptoms where passed off as Depression or Labyrinthitis, inflamation of the ear, by Doctors.
Darren who says the condition is so debilitating it is stopping him from being a proper Father to his three year old son, was adamant it was neither.
Next his memory began to deteriorate and speech started to become slurred, so he returned to Doctors and was advised to have an MRI scan at Sandwell Hospital in May 2007. He said medics feared he could have Cancer.
But the results never materialised and Darren went for a second scan, this time at Walsall Manor Hospital late in 2007.
The results arrived early in 2008 along with findings of the first test.Both scans tested negative for cancerous cells, but did suggest his symptoms could be linked to CM.
Darren who lives with his wife Victoria and their son, then undertook months of research online into the condition which he had never heard of.
He uploaded images of his scan results onto the American Syringomyelia Alliance Project Website and also spoke to bloggers on Conquer Chiari, an American internet forum dedicated to CM.
"They all suggested i'd got CM and that i needed to see a Neurosurgeon" he said. " it was great relief to hear that i'd got a problem and wasn't just making it up or being a Hypochondriac".
Darrens fears were confirmed by a Neurosurgeon at Selly Oak Hospital and seconded by an Expert at the Walton Centre in Liverpool, the only practice in the country dedicated to the dedection and treatment of the disorder.
Darren underwent Brain Surgery at Selly Oak Hospital in April last year to address the condition, which affects the Cerebellum in the Brain and often leads to Syringomyelia- the formation of cavities in the spinal chord.
But he still suffers from many of the initial symptoms and relies on a daily course of medication and painkillers.
He will meet a consultant at Selly Oak Hospital in the coming weeks to find out whether he must have more surgery.
Darren, who has been out of work since forst suffering from the disorder, is now putting all his efforts into setting up a forum to help sufferers in the UK.
He is also lobbying the NHS to produce a pamphlet on CM to be distibuted to GP Surgeries.

The New Sick Note

The Goverment has now changed the way GP's issue sick notes....Below is a extract from Direct Gov explaining the new note which is now called the Fit Note.

The fit note replaces the sick note. It is the new form that your doctor will give you when your health affects your ability to work. Find out how the fit note can help you and your employer manage your return to work after illness or injury.


Replacing the sick note
What has changed?

The fit note allows your doctor to provide you with more information on how your condition affects your ability to work. This will help your employer to understand how they might be able to help you return to work sooner.

The changes mean that your doctor can:

* advise when you may be fit for work with some support
* suggest common ways to help you return to work
* give information on how your condition will affect what you can do

What stays the same?

The fit note can still be used as evidence for why you cannot work due to illness or an injury. You still won't need the fit note as evidence until after your seventh calendar day of sickness.

If you need to apply for benefit the rules and processes have not changed. If your doctor has recommended that you 'may be fit for work' you can still apply for benefit.

The requirements for the payment of Statutory Sick Pay have not changed. If your doctor recommends that you 'may be fit for work', and you and your employer agree that you should remain off work, you should still get Statutory Sick Pay.


Understanding your fit note

When your doctor provides you with a fit note they will advise you of one of two options. You will either be 'not fit for work' or you 'may be fit for work'.
'Not fit for work'

Your doctor will choose this option when they believe that your health condition will prevent you from working for a stated period of time.
'May be fit for work'

Your doctor will choose this option when they believe that you may be able to return to work whilst you recover with some help from your employer.

Your doctor is able to include some comments which will help your employer understand how you are affected by your condition. If appropriate, they can also suggest one or more common ways to help you return to work.

This could include:

* a phased return to work - where you may benefit from a gradual increase in your work duties or working hours, for example following an operation or after injury
* altered hours - allowing you the flexibility to start or leave later, for example if you struggle travelling in the 'rush hour'
* amended duties - to take into account your condition, for example removing heavy lifting if you have had a back injury
* changes to your workplace - to take into account your condition, for example allowing you to work on the ground floor if you have problems going up and down stairs

Discussing your fit note with your employer

If your doctor has indicated that you 'may be fit for work', the fit note will give your employer the information needed to begin a discussion on whether you can return to work.

If it is possible for you to return to work agree:

* how this will happen
* what support you will receive and for how long
* how your pay may be affected if you return to work on different hours or duties

Sometimes it may not be possible for your employer to make the changes required to help you return to work. If this is the case, you will not be able to return to work until you have further recovered. You can use the statement as if your doctor had advised you were 'not fit to work'. You will not need to see your doctor for a new fit note.
Disagreements with your employer about returning to work

If you do not agree with your employer on when and how you will return to work you should explain to them why you disagree. There may be issues which your employer was not aware of when they made their decision.

If you are a member of a trade union you may want to ask your union representative to help you with this conversation. Alternatively, you might want to seek support from a local advice centre, eg a Citizens Advice Bureau.

My Trip to the Walton Centre

Friday 9th April 2010 i was woke by the horrible tone of my alarm at 4 in the morning for my long journey to the Walton Centre Liverpool for my appointment at 9 am. Half 4 a slow walk to the bus station for my bus to Birmingham New street station to board my train at 6. All went well until i got on the train and to be told that there was a delay because of over running engineering works on the tracks between Birmingham and Wolverhampton, 15 minutes all together. A long and boring journey stopping at every station along the way. Finally reached the wonderful station of Liverpool Lime Street. Down the steps into the bowels of Liverpool to get my underground train bound for Fazakerly. Reached my destination at 08:50 and Bang on 9 for my appointment.
Now three weeks prior i had received a letter from the Walton Centre saying i had a appointment to see a Neurologist, not who i had asked my GP to see. I called the Walton Centre two weeks before the appointment and explained that i had asked my GP to refer me to a Neurosurgeon who had been recommended. They told me i had to get my GP to do another referral for the NS in question, this i did. Again i received another appointment with the same time and date and the same neurologist. Back on the phone to the Walton and they did tell me that the referral had been received to the NS i had asked for but there was a thirteen week wait. Thursday 8th April, the day before my first appointment which was incorrect, i called the Walton Centre to ask if that appointment had been canceled to which there reply was no. I asked them if it would be worth my visit as i was getting desperate, they told me it would be worth while as i may get the answers i needed. Upon my arrival to the Centre i was told to sit and wait in the allotted area. I was finally called in at 09:40, forty minuets later than i was expecting.I got to see a Professor of Neurology, not the person i had been told i would be seeing, although i cannot speak highly of this Professor, a true professional and a thoroughly nice chap. he sat me down and told me that it was beyond the help of a neurologist and that i had to see a Neurosurgeon ( what had i said all along ). I could feel my blood starting to boil as this had been a long journey and felt i had waisted my time ). He stopped me in my tracks and said that the NS i had asked to see was in the building doing his tour of the wards and would call him to see if he could fit me in. I was thrilled with this and hoped for the best. Finally 10:30 the NS came to see me. What a lovely man, again cannot speak highly enough about him. He answered all the questions i had for him, he told me that all the damage i had received to my nerves was irreversible. He looked at my old scans pre op and told me that i had a syrinx in my brain stem ( I had not been told this before ) and that i also had a syrinx in the thoratic area of my spine ( i knew about this but thought nothing more of this) He told me that i really should have had a full MRI ( not what i had )and that he would like to investigate it further in case something else had caused the Syrinx there, he did say that he may not find anything. He explained that all the symptoms i was getting was typical of Syringomyelia. I was beginning to think i was imagining it as my first NS told me that this is not the case. I walked away not only a bit saddened regarding the fact i will have to live with these problems for the rest of my life, but also happy ,knowing this now at least i can work around it, Make the most of my good days and listen to my body and rest on my bad days, also regarding work, i can at least now find something working from home or part time, i will have to wait and see. My Family are a bit sad about it but i am not, it is a relief really. I am sure you all understand. The day was perfect for me , i managed to get to see the NS i asked for in less than thirteen weeks and had all the answers i needed. The NS has also wrote a letter to my GP explaining all of what we spoke about that day and has asked him to refer me for another MRI, This time a full one, and in my home town rather than make that journey again. He said that when i have had it, to get the images put on disk and send them up to him so he can take a look, he would then call me with the results and tell me if i needed further surgery, this again will save me a journey. So in all a good day, over the moon so far.
I made the most of the rest of my day by taking a look round Liverpool and visiting the local attractions. Although all of the traveling and walking around with my trusted walking stick has put me in bed for the last two days, riddled with pain.
I am so happy with the Walton Centre and have heard good and bad reports about it, every ones story is different. A+

Interested in joining the AA Sir

Just a funny little story which happened to me the other day with regards to speech problems with ACM. ( or i have suddenly become fluent in another language ).
I was walking through my local shopping centre when a nice young lady stepped in front of me and asked " would you be interested in joining the AA sir " My reply was supposed to be , I am already in it thanks. Instead it came out as Rinitamldyeal. What the hell is all that about. Lol. This can be quite embarrassing at times but i have now become used to it and have to laugh to myself. This poor girl must have thought i was a foreigner.

Craniocervical malformations can cause speech disorders as a result of paralysis, weakness, or incoordination of the speech musculature, with motor and functional disorders that affect phonation, resonance, articulation, and prosody [46].

Speech, swallowing, phonation, and respiration are functions that may be disturbed in people with Chiari syndrome and syringomyelia. They are part of the rehabilitation realm of the speech therapist. In children, in addition to the functional disorders mentioned above, language development and learning may be affected. Speech therapy has two types of intervention: preventive and palliative.

When a deviation from normal function is detected, even if it is mild, the patient and family members must be informed about the difficulties that may occur as the condition progresses. Reinforcement of swallowing, respiration, vocal tension and reading skills is important to preserve such functions. If no rehabilitation is initiated one problem can lead to another. For example, buccofacial motricity disorders can lead not only to swallowing disorders, but also to chewing and phonation abnormalities. Once the lesion is established, speech therapist interventions are palliative, targeting the areas where dysfunction is identified.

The Pits and the Pendulum

As some of you know, i had Decompression in April 2009. I still have a range of symptoms remaining.I have dizziness and balance issues on a daily basis, most days are bad and some very bad. It is even worse when i change the position of my head. The only way i can describe it is, it feels as though the cerebellum is like a pendulum, it is constantly swinging slowly, i move my head and it causes it to swing even more ( the Pendulum part of the post title ). On the really bad days i get bad fatigue with it also. I still get the occasional headache which causes one of my eyes to droop as well as my mouth. on my very bad days i have to use a stick to aid my balance as walking becomes a problem, My speech becomes very slurred also. The other day i went into my local shop, without my walking stick and was having a very bad day. I could hear the shop owner and a customer saying how disgusted they were that i was drunk so early in the day (little do they know).This has, along with the issues fighting to get the Benefits to listen has given me depression, yet more medication ( hence the pits part of the post title).
I went back to my GP in September to ask him to refer me back to my Neurosurgeon. Come February this year i still had not heard anything. I called the NS secretary and she told me that they had not received a referral letter from my GP ? She also told me that the NS had just had Major surgery himself and would not be returning until June this year and then it would only be for consultation and not surgery. She told me that he would not be offended if i wanted to see someone else. I returned back to my GP and asked why he did not send a referral letter. He said it was most likely the Receptionists fault. I asked him to refer me to the Walton Clinic in Liverpool and he told me it was not that simple ( bureaucratic) was his words, and that he would have to write to my current NS and that he would then have to write to the Walton centre. Of course i took this as gospel, what did i know i am not a doctor. I called the Walton clinic my self to ask if this was true to which they replied no. Off again to my GP and this time i was very blunt with him and instead of asking, i told him to refer me. This worked a treat as i am sure he could tell i was not happy. I have now put a formal complaint in to PALS about the conduct of my GP and i am moving doctors.
The dizziness issues have become an embarrassment to me because people look at me funny thinking i am drunk and along with my slurred speech and difficulty trying to find the right words when talking.
I hope that one day someone will listen and help me get rid of these wretched problems.

Formication

Some of you may have experienced the feeling of something crawling under your skin, Itchy skin. I have experienced this for over three years every day and it drives me mad. It feels as though there are ants crawling over my skin which is all over my back, head, face , arms and back. I see on alot of Forums are having people ask if this is a symptom of Chiari / Syringomyelia. It is a symptom of these conditions and it is known as Formication .The experience of formication may sometimes cause feelings of itchiness, tingling, pins and needles, burning, or even pain. When it is perceived as itchiness, it may trigger the scratch reflex and because of this, some people who are suffering from the sensation are at risk of causing skin damage through excessive scratching.
Here is a link to the Wikipedia site for more information

http://en.wikipedia.org/wiki/Formication