Heart Problems

Has anybody had heart problems ?

Just after Christmas 2010, i had to lie on my lounge floor after i got crushing pains in my chest, heavy sweating, pains in my left arm and up into my neck. It seemed to pass after about 10 minuets. My wife returned home from work later that day and said that i didn't look very well, i told her what had happened and she called the NHS direct who then called for a ambulance. They took me to my local Hospital and after a blood test and ECG told me all was fine but suggested i could have Angina so they gave me a spray to use under my tongue.

A `couple of weeks went by and i was asked to attend the hospital to see a cardiologist who sent me for a stress test. The results were fine, or so i thought.

Again, a few weeks went by and i received a letter saying that they had looked at my results again and it showed i was getting insufficient blood supply to the heart muscle, i would be called for further tests to be made.

Last month i was called in to have a angiogram done, the results showed that i had no blocked arteries ( what a relief ).

I have now had a letter asking me to attend the hospital for another scan as they are still not happy.

I wait in anticipation.

Has anybody else had these problems following Chiari ( can it all be connected ) who knows.

pseudomeningocele

Hi everyone, just a little update to how things are with myself.
As most of you know, i am still having a lot of symptoms after decompression. Headaches, memory loss, vision problems, speech, pain, seizures, drop attacks, the list goes on.
I had a full MRI done in December 2010 and was told by my Syringomyelia nurse that my Neurosurgeon could do no more for me and that he was happy if i wanted to get a second opinion on the matter ? ( why would he say such a thing if he was so sure ). Anyway she basicaly told me that he could do no more for me surgicaly ( good news for me ).
I took the liberty of purchasing a copy of my MRI results . The reults are as follows.

Findings:

The small Pseudomeningocele at the craniovertebral junction is again demonstrated and appears unchanged since previous examination. The previously documented syrinx is no longer visible. The cord returns normal signal throughout the cervical, thoracic and lumbar region and the roots of the cauda equina appear unremarkable. A small posterior disc bulge is noted at L5/S1 level. There is however no evidence of neural compression.

That all sounded fine to me and i took it as gospel.

I recieved a letter from my NS in March , at the end it said " all i can do now is reasure Darren that he is not harbouring any serious or sinister disease process and i do not think that any further neurosurgical procedures are appropriate. If Darren wanted to meet with me and discuss matters face to face , then i would be happy to arrange a further appointment for him ".

I dont know if its me just feeling a bit touchy , but i found that bit of the letter very condecending.

I rang up his secretary and have booked a appointment for June and i will find out what can or cannot be done with this Pseudomeningocele, and could this be the cause of my problems.

Pseudomeningocele
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A pseudomeningocele is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.

Pseudomeningocele may result after brain surgery, spine surgery, or brachial plexus avulsion injury.

Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.

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.