Some Advice Please
Sun, 04/03/2011 - 22:34 | 
goughy34 Hi
I have 5 year old daughter who have been diagnosed last. week of having Arnold Chiari (1). We saw a Neuro Surgeon the day after received a phone call from the hospital who took the initial MRI scans.
Those 24 hours were all of a blur as you could imagine fter getting the phone call and reading up on the condition before we saw the a Nero Surgeon.
He explain the condition and the whys and wherefores and surgeryed the best he could to non surgical people. My duaghter has been put on a wating list for a further MRI to 'dot the Is' and 'cross the ts' as he called it to check for .
Obviously we are in the hands of the surgeon but would welcome some independant advice at this stage, as surgery scares the living daylights of us.
My daughter is fit and well in all aspects except she complains nigthtly of a headache at about 3am, she isnt upset, we give calpol and she goes back to sleep. Other than there arent any other symptons and she is a typical 5 year old.
I have millions of questions know for the surgeon, but I wont see him for another 6 weeks, but my main question that I would welcome advise on is from your experience having AC 'is an operation necessary at ths stage' or is there a real danger other symptons could materialise in the future.
The operation is a big op for anyone at any age, but for a 5 year old does the benefit outway the pain she will go through and the risks.
Your comments would be greatly appreciated
Two parents going out of our minds.
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We are with you. My 4 (almost 5) y/o got diagnosed w/ Chiari 1 incidentally after a fall and numerous CT Scans/MRI's. He is scheduled to have decompression surgery in June but we are reluctant because he has no symptoms. Our neurosurgeon said we could wait but that it is progressive and will get worse. He is concerned that if the syrinx gets larger it will cause irreversible nerve damage. In our minds it is a preventative surgery and I don't want my son to have to live with anyting in the future that could be irreversible. Still....the thought of putting him through this is difficult to comprehend and especially since he has no complaints.
Hi. Im so glad i read your blog as i was beginning to think there wasnt anybody else in my situation!
My daughter was only diagnosed yesterday but has been having symptoms for over 2 years. It all started with daily headaches and nose bleeds. I took her to the GP who at first told me to give her Calpol but as that wasnt working i took her back and they referred her to the Leicester Royal Infirmary where she underwent a C.T Scan,2 M.R.I's, a EEG and blood tests over time. She was then referred to Nottingham Queens Med who have been brilliant and yesterday,after her most recent M.R.I they have finaly diagnosed her. She is on medication that has helped her abit but not alot and we have been told now that they are just going to keep an eye on her for as long as they can then she will have to have a pressure test done. Her current symptoms are headaches,nosebleeds,neck pain, back pain, leg and arm ache, pins and needles, feeling sick etc. I'll be happy to chat if you want to.
Hi I felt so alone until i found this site.
My little girl is now 5 and has been undergoing treatment for the last 2 years for her condition.
In june last year she underwent spinal cord dethethering, hoping this would releave her symptoms. unfortunately a year on we are no better.
her symptoms include shortening of the leg, neuropatic bowel and bladder, headaches, leg pain, backpain, hip pain, fuzzy feet and hands( pins and needles)and tiredness too.
We are now at the stage that we are waiting for another MRI scan to see which way we go now, with regards to operations.
she is my little hero and continues to play with her twin sister and brother like any healthy child.
I however feel at a loss and so alone in this but cant show her my concerns.