A Little About Me.
Wed, 09/02/2009 - 12:24 | 
Chris 
My name is Chris, I am a 40 year old bloke, married with two small children and I live in Cheshire UK. I was officially diagnosed with Chiari Malformation Type 1 and Syringomyelia in early January 2009.
I had Foramen Magnum Decompression surgery in early April of 2009 in an attempt to stop the progression of my symptoms caused by my 17mm herniation and my syrinx which covered C1 to C3.
Just like many others, when I was diagnosed I had never heard of either conditions, so I searched the internet to find some answers. What I did come across was a mix of information, some of it relevant, some of it not, some of it contradictory but mostly I found it very confusing and very scary.
In the early days, all I had to go on were the terms "Sirinx" and something called "Kiari" or something like that. I heard it being called Chiari Syndrome, Chiari 1, Arnold Chiari Malformation, Chiari Malformation, hind brain herniation and many other things. I read words and phrases like cerebellar tonsils, posterior fossa, vp shunt, occipital bone, vp shunt, nerve damage, cervical spine, brain stem, hydrocephalus and chiari decompression surgery.
None of that meant much to me until I started to read more and more articles, visit more and more websites and forums. I even read through spinal injury information and visited the related websites reading peoples stories and becoming generally confused and scared.
I eventually joined a forum where I found people in a similar situation to myself. At last, I had found people that knew exactly what I was going through, exactly how I felt and more importantly who had some of the basic answers to help me further my own research.
They gave me a lot of support and much needed hope that I could get through this and become far more practical in my approach.
My little oasis was http://www.chiari.co.uk and I will be forever indebted to them. That support continues to this date, and thankfully I am also able to repay that support by in turn helping the newer members that are in the same position that I once was.
This has lead to me building this site, to offer a place where people can have a basis upon which to build their own research and self help activities. I am not medically trained, therefore non of the information here is intended to replace any advice given to you by your Doctor, GP, Neurologist, Neurosurgeon or any other medical professional. I offer the help and support in this site as a means to answer a few basic questions, address some basic concerns and offer my personal experience and that of my fellow Chiarians on the most frequently asked questions when I meet a new Chiarian for the first time.
Thank you for visiting, and please feel free to add to the support that I offer by registering with us and joining in. Also, please feel free to ask any questions either in the comments section or by email.
Also, please sign up at the bottom of the page for the newsletter. There area a lot of exciting things happening in the world of Chiari at the moment and soon to be published official information and support from the NHS and other organisations that I am currently on the "pre-read" list for. Also, I will be launching my e-book and will be offering freebies to some members who do sign up.
I will also be running an incentive to win 2 weeks accommodation for free in a beautiful self catering apartment in Lanzarote. Sign up to the subscription service between now and the end of December 2009 to be eligible and be automatically entered into the free draw .
Thank you.
Other Links that you may find interesting:
Chiari and Syringomyelia Symptoms
Rare or Just Uncommon?
So what is Chiari Malformation?
Glossary of Terms
My Twitter Profile
Hi Chris,
My name is Sarah and i have a similar diagnosis to you. I was diagnosed early last year and went on to have a foramen magnum decompression and c1 laminectomy. I also was told this would be to halt progression of the disease and that i would probably be left with the symptoms that i presented with.
My story started late 2008 when after i had a coughing fit i felt a pain shoot down my left arm. This did not go away so after a few weeks i saw the specialist nurse at the surgery and told her i thought i had a trapped nerve, she agreed and sent me home with diclofenac. The pain did not go however so i made an appt with my G.P as by now i could not feel whether something was hot or cold and the pain in my arm was getting worse. At the time i went to see her i had had a bad fall down the stairs and because i was starting to get neck pain she thought i might have a crushed vertabrae. She arranged for me to have an MRI and thats when they found the syrinx. i was told this by my gp who rang me at home and being a staff nurse myself asked straight away 'was it a tumour?' She said she couldnt rule it out. I was referred to the neuro surgeon at oxford who i thought would have seen me straight away but when the letter came i was given an appt for 2 months. This was then cancelled . By then i had been told it wasnt a tumour but obviously i was still concerned after looking syrinx up on the net. I was absolutely convinced that it was due to the trauma of the fall and when eventually i got to see the surgeon and he said i had chiari i was absolutely gobsmacked that this had been there from birth without presenting itself until now. We discussed the options and as the only other option other than surgery was probably ending up in a wheelchair i chose the surgery. My god the pain in my head after that surgery i will never forget. I had been told by the registrar that i would feel like i had a hangover for a couple of days, he obviously had never had a hangover or surgery because that was the biggest under statement i have ever heard. Anyway i had been led to believe that once i had had the surgery i would be cured and that would be the end of it but for my last appt i saw a locum consultant who has a special interest in chiari and he informed me this was not the case. apparently this is for life and with each new symptom they will discuss whether further surgery is needed. Well after my op i was re-admitted with a meningiocele and they wanted to put in a vp shunt after the lumbar drain didnt completely resolve the problem. Having some medical knowledge i knew the risks of having that done so i declined and was allowed to go home. They said to me on my discharge 'we hope youre not re-admitted too soon' Well thank god i wasnt but i definitely have more symptoms now than i did pre-op. I would be very reluctant to have more surgery though and feel at the moment i would take my chanceswithout.
Thanks for taking the time to read this and its been great looking around your site. i am totally computer illiterate so it might not even get to you.
I would like to say that i feel really lucky that i was diagnosed so early and have not suffered the way that a lot of people with chiari havE. I know its not the greatest diagnosis to have but i just thank my lucky stars every day that its not terminal.
Thank you for your kind comments and yes, you do have a familiar story.
Unfortunately because there isnt a massive level of information and understanding about chiari et al, then there is always going to be a lot of differing opinion on what is best to treat, what the diagnosis should actually be, if there are other conditions complicating the result etc etc etc
I am not medically trained, but can appreciate lots of things because we all tend to speak to lots of different people with it when we can actually find them.
Personally I found a lot of great people at www.chiari.co.uk forums, lots of great people there in a similar situation and all fantastic!
Try popping over and saying hello?
Thanks for your message, and good luck with your progression.
Speak soon and TC
Chris
Hi chris
Was diagnosed with syringomyelia six weeks ago. Part of right foot is numb. I can live with that. The on and off numbness in my face and head(more on than off) is hard to live with. I have an appointment to see a neurologist in six months time. am fairly concerned about this wait as i wonder if irrevesible damage occur in that time
Colette Ireland