arnold chiari malformation

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hi my daughter is 15 was told that she has this about 3 weeks ago as we took her to docs with right side of her body feeling numb & tingly & feeling dizzy. We are having another Mri scan on her spine in a few days. I don't really understand how painful this is & am feeling totally helpless as a parent. The last 3 days she says she has no energy & seems very low as she just wants to be at home. I wonder if this is normal Anna x

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  • Posted

    Hi Anna

    I am sorry to hear that your daughter is not feeling so well. However, I am glad that the necessary investigations are being done.

    I have chiari and I also have a 15 year old daughter! (She does not have chiari)

    To help answer your question, it can be very painful, with good days and bad days! it is also exhausting at times. Being a 15 year old girl is hard enough without any medical Conditions adding to the stresses of teenage life!

    I assume that your daughter has had a brain mri that had led to this diagnosis? The spine mri is to see if there is any syrinx which is common with chiari.

    The best advice I can give you to help your daughter feel more comfortable is to take care with valsalva movements (coughing, straining, etc) as these can bring on headaches at the back of the head. Plenty of rest for now & chill time while you wait for all the necessary tests to be done & to see specialists etc.

    If you do any research on the condition please stick to the UK websites, the Americans love a bit of drama!!

    I hope I have helped a little bit. If I can help in any other way, please just ask. Try not to worry......take care,

    Hails

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    • Posted

      Hi Hails, thank you so much for your reply.  Yes she had the brain mri scan done about 3 weeks ago & is having the spine one tomorrow bless her she is so nervous about it. Then we see the doctor on the 15th April. So at the moment it's all so scary! 

      she doesn't seem to have her headaches at the back of the head its in the side she says it's where her temple is. I do try to understand how she feels as I'm covered in arthritis so I have good & bad days so I presume it's similar to that but I'm on drugs to control it, is this the case with this? I think my no 1 worry is that she has been so low...now it's the weekend she's picked herself up I supose she's not wanted to go to school cause she feels different to her peers. Hope you don't mind the questions I'm just trying my hardest to understand her so I can be more supportive. 

      Anna x

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    • Posted

      Hi Anna

      From my experience of chiari ( I was diagnosed 7 years ago) there is a broad range of symptoms & everyone is different!

      Reassure your daughter that the spinal mri isn't too bad, just lay still, I find keeping my eyes closed the whole time better for any mri.

      Are you seeing a neurologist on the 15th? It is a swift appointment, some people wait months!

      Also, has your daughter had her eyes tested too as well as blood tests? Just to rule anything else out.

      Once you get a diagnosis/ mri results it helps to know where to go from there.

      I am having the decompression op next month and my daughter is worrying, she is getting a counsellor at school to talk to, which I think she needed before she knew about my op anyway. Teenage girls have it hard- I remember myself how tricky things are.

      These forums can be of help to talk to like minded people.!

      Your daughter is lucky she has you, you seem so caring and supportive- if I can help in anyway- please just ask.....

      Hails x

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    • Posted

      Hi, thank you you are very supportive. Hope it all goes well & your daughter is ok. 

      pin April we are only having a review with the doctor that we saw 3 weeks ago.  By the sounds of things it will be a long road to find out everything about this. Good luck whenever you get it done. Once again thank you so much for your support I will let you know how we get on. Xx

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    • Posted

      Your more than welcome. I hope I have been a little bit of help.

      Good luck with it all, I hope your daughter gets the treatment she needs & feels better soon.

      The ann Conroy trust (website) is worth a visit, it is a great uk website for information & support.

      Given enough research you will find specialists that have an interest in both Chiari malformations & Syringomyelia. I travel across the country to see my neurosurgeon. (Well worth it though!)

      Wishing you both all the very best- let me know how you get on.......

      Hails x

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  • Posted

    Anna - I am so sorry to read this. I co-admin a support group on facebook. Please feel free to join us. It is a very loving knowledgeable group of chiarians.
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