My 5year old has been diagnosed with chiari malformation.

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We have recently been told our full of life, beautiful little boy has been diagnosed with chiari malformation, which has caused damage to the spinal column causing a curve to the spine. which I discovered 11months ago and he has also been diagnosed with scoliosis. We have been told surgery will be going ahead and hopeful for january following more tests and a further MRI. Our surgeon has told us a plate fitted to the skull to expand the area to support brain and maybe more effective than removing the bone at the top of the neck, wanted to know if anyone has has this surgery. PLEASE message me as would love to hear your thoughts and experience as in a desperate place at the moment.

Hayley x

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  • Posted

    There are a few Chiari support groups on Facebook, some even specifically for parents. I would recommend that you join. Most are closed so you will need to do a search. I am in Chiari Malformation - The Struggle is Real. If you join, you can ask for info, there are quite a few parents in our group too.

    Also, very important you use a Neurosurgeon who specializes in Chiari, there are very few "true" specialists.

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  • Posted

    Hi hayley

    I am sadden to hear your news. I fully understand the impact it can have on a mother. As I saw my parents very worried and concerned.

    I had decompression surgery and the back skull removed and later had a shunt fitted to help the flow of fluid. I also have a curvature of the spine. I don't know if I had a plate fitted in my skull though.

    The best thing is from what I recall from my neurosurgeon is that your little lad is getting surgery at a young age. He told me that and i was 17. So I had surgery at 17 and chiari developed from a young age for me and know one ever found it until i was in pain most days.

    It is rough however you need to go through it for a chance that he will be better in the future. Try and remember it is for the best.

    It is now 9 years since I had the operation and i have achieved a degree in psyvhology, and on an msc, learnt to play the guitar now for 15 years and achieved more. Without the surgery I wouldn't have acheieved those things. I still have issues such as with vision and balance but it is nowhere near as bad as it was.

    Hopefully there will be minimal damage and/or symptoms for your lad.

    I wish you and your little lad all the best in the future and hope all goes well for you in January.

    If there is anything else you want to know ill do my best to help you.

    All the best and take care

    Jon

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    • Posted

      Hi Jon, 

      thank you so much for your response, to hear your story it provided our family with hope and support for the future.

      At present we know surgery is the only option and just want it to happen now. The issue we are faced with is the plate that will be fitted, as it's not a common operation and their isn't much information on this.

      I do have a few questions if you don't mind,

      do you remember the surgery, like being in hospital and how you felt?

      I know you was older but how was you told what was going to happen?

      After surgery how long was your recovery?

      Im so pleased you have achieved so much and offers so much comfort for us as we feel Archie's future is so uncertain as we don't know what to expect.

      thanks again and be in touch if we have any more questions.

      Hayley

       

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    • Posted

      Hi hayley

      Hope all is well as can be.

      So first off although I can answer your questions always listen to your neurosurgeon. He or she knows best. Which I know you will. smile

      So being in hospital and how I felt. I had two ops. First was making room in the back of the skull. Now for me I was not to bad I was up and walking within couple days. I think it was because is was relieved and confident that what I had been through helped me. My second op for a shunt I can't sugar coat this was tough. Took me a good while to get over that. The last thing I remeber is my surgeon and his team getting ready and comforting me and the anestistis saying count down from 10 to 1. I got up to 7. Next thing I knew I woke up in the same up room with an Irish bloke asking if I was ok and surgeon saying it was a success.

      I can't duly remember how I was told his the op was going to happen. However I do vaguley remember being in a consultation room with parents and my surgeon explain what he would do in the operation and what is the reason why he is going to do it. Here I was told it is not a cure but an op to stop things from getting worse.

      Recovery time ovrall he told me 5 years. So within those 5 years I couldn't lift or do anything to strenous. However luckily for me I went back to college in a matter of months. However though it is still questionable weather i should have done that or not. Although i completed my plumbing course my body was still getting used to things. It is here I found out I became scared of heights and vision would change. So that was silly.

      I think littlens in my opinion shake things off quicker. And I hope he does after his op. I know you will do this just keep a really good eye in him through his recovery . As he gets more confident and more energetic in my experience he is pulling through his recovery .

      Anything else you want to ask just say smile

      Take care

      Jon

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