hi, ive recently been diagnosed with chiari malformation type 1

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im 27 and have suffered really bad pains for 3 years and now the doctors have decided to investigate and have diagnosed me with chiari malformation type 1 but my symptoms are quite bad my operation is in 4 weeks and im worried about it due to past experiences can anyone help with how they felt and how long it took to feel better after the op? and how did it go?

sam

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    Hi Sam. My name is Mandy and I live in Wellington , New Zealand. I sympathise with your predicament and can recall the odd mixture of relief-at finally knowing what it is that is the cause of all of my symptoms and signs- and trepidation-at knowing that I faced neurosurgery. I was 43 at the time and had more symptoms that either I or my general Practitioner can recall.

    About 60, if I was forced to put a number to it, and had , probably like yourself, many years of accumulating a long list of what seemed to be hypochondrical behaviours! I was diagnosed with an Arnold Chiari Malformation (with an accompanying syringomyelia), in 2005.

    I had the surgery in September of that same year. I had a significant wait here in new Zealand as the surgery was considered 'elective' and I decided to go with the Public health system at the time.

    The goal of the surgery is essentially to stop progression of the disease. The neurosurgeons will not claim to achieve any more than that and indeed this is what they accomplished for me Sam. Like yourself I had a lot of pain. Mostly in my legs (not a typical symptom of ACM) but by the time I got to the surgeon's table I could hardly walk or move at all. My bowels and bladder and ability to swallow amongst many other bodily functions were affected.

    The syringomyelia ( a fluid filled cyst in the spinal cavity caused by the cerebellum pushing into the spinal canal after many years to put it simply) was quite large and very little room was left for spinal fluid to establish around my spinal cord.

    The surgery was fundamentally successful. I had a craniotomy. a duraplasty, decompression and spent about 12 days in hospital.

    I needed a little bit of occupational therapy to learn to walk properly again as my limp had been quite severe and I had significant balance, hearing and gait issues. My pain in my legs was almost entirely gone. I was warned that the areas of numbness and other nerve damage caused and done prior to the surgical intervention could not be recovered Sam by the surgery. Most were not however some things unexpectedly improved. There was no predicting what got better and what did not so I just rolled with everything. You are 27-you will too. I felt immeasurably BETTER. It took about 6 months to feel an approximation of what I believed was 'normal' again. The thing is -it is a little difficult to recall what that is after many years of slowly deteriorating health.

    I was able to return to my job as a teacher and for two years all was very good. However I eventually (about 2-3 years later)needed some medication (Topiramate) to assist with pain relief. The neurologist described my condition as neuropathic pain. I still have a syringomyelia Sam. This makes things more complicated. I also have an underlying Blood clotting disorder (idiopathic thrombophilia)which adds to my medical difficulties as well .

    Overall I recommend the surgery to anyone who is in your position. There is no other evidence based sustainable solution and as I said to the neurologist who told me what I had post MRI all those years ago" I am pleased it is this-there is a surgical intervention". For many neurological disorders there is nothing except for medication."

    I am now quite surprised when people bring up my brain surgery although I still suffer from discomfit and other medical problems. The ACM was treated successfully and I would undergo it again without hesitation.

    I did use the internet a lot to educate myself . I hope this helps a bit. I am happy to answer more info. There are a few websites more helpful than others I found and also a book that is really good. Contents under pressure" on LULU Hope it goes well Sam.. Bye, Mandy

    http://www.lulu.com/shop/raphael-dalonzo/contents-under-pressure-one-mans-triumph-over-chiari-syndrome/paperback/product-3132406.html

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  • Posted

    Hi Sam,

    My name is Marina, I'm in the UK, West Cumbria and was diagnosed with Chiari and a Syrinx. I had my decompression 3 years ago, I remember feeling terrified at the thought of brain surgery, but I needn't have. The op was done at the Walton Centre in Liverpool by Mr Buxton who is an incredible surgeon. It's maybe a strange thing to say but on the day of the op a calmness came over me, everyone I have spoken to have said the same thing! There is pain after the op, as you would imagine BUT the nurses soon get that under control.

    The recovery rate is different for everyone, no two people are alike, some take as little as 6 months while others can take up to a year. Also remember even though you're healed up on the outside it can take up to 2 years before everything is healed on the inside. I hope I have helped a little.

    Good luck for your upcoming operation, I hope all goes well. xxxxx

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    • Posted

      Hi DizzyDora

      I know this is a MASSIVELY old post but just reading up on things and seen your post so though I would say something just incase yoi still active on hear? 

      My names Tom and I also have b en diagnosed with chiari and it's my pre-op tomorrow. I also am under Dr Buxton at the Walton centre, I am really nervous as I am sure everyone is going for this op, but I feel lucky to be under the Walton centre/dr Buxton and I feel very reassured and happy once I am there. 

      Hope you are back to normal now? And if anyone else is reading and wants to add please do so :-) I do know this is a very old post but thought I would try anyway. 

      Thanks for reading

      Tom 

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  • Posted

    Hi Sam,

    Well wishes to all of you and may I say that I am pleased to find some sort of support and a chance to talk with people that suffer from this condition. Can I ask Sam whether you have indeed had the surgery?

    I too was recently diagnosed with Chairi type 1 and with Syringomylelia. Im nearly 26 and have been suffering with symptoms since I was 10 years old. Headaches at first (diagnosed as migraines) and then intense shooting pains (diagnosed as pressure headaches). My symptoms are very wide ranging including all the `normal` symptoms with this condition as well as intense face and jaw pain. I am currently waiting to see a specialist and even though I have a diagnosis there are a lot of mixed feelings. Again, like others I was dismissed and to be honest felt like i had to just get on with it over the years. I have also probably done a lot of activities over the years that have unknowingly exacerbated the size of the syrinx.

    I am pretty sure from my MRI and consultation with a neurologist as well as the many symptoms that I have that surgery will be on the cards. I admit that I am a bit worried at the prospect of surgery but also relieved that my symptoms might diminish. As well as this I am also annoyed that this wasnt diagnosed before.

    Mandy, Marina thank you for your informative supportive replies on this strand, they have helped a lot.

    Hoping to hear your replies.

    Chelsie

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