20 month baby girl after decompression surgery.

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My granddaughter had decompression surgery for Chiari Malformation, Jan 4 2017 its only been a little over a month, but symptons seem to be coming back she never sleeps through the night crys unless mommy or mamaw are holding her, grabs her head alot and her temper is out of this world, we know she is in pain you can just tell and it breaks your heart,she does have her good days or rather hours but mostly you can tell she is not feeling good, she will absolutely not take anything orally for pain since the surgery she will throw it up instantely, we now give her suppositories with tylenol all the time its the only way to help her, has anyone else delt with a toddler after the surgery we are not sure whether to be alarmed or not she goes back to the neurologist March 25th to her checkup iv heard that sometimes they will have to do surgery again i pray she doesnt, she was so misserable, iv read alot from adults on here does anyone alse have a baby going through this? Thanks. ( My daughter is going to get on here also)

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  • Posted

    Oh my heart goes out to your family, this is the youngest I have heard of going through this. It's hard enough for anyone older, but a child, it's difficult. I was very sickly for 3 months after operation, and still take medication 3rys later for nausea and dizziness. You have to rest after op but how can you tell a one so young this! I'm hoping as months go on it will get better, as most do, until the child is older and can understand the condition. You can only do what you can to make it as comfortable as possible for the little one. . But with love and support you will get through this. God blessx

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  • Posted

    I had the surgery in 2014. In my case it did help my balance and I can walk. I'm 62 in assisted living. My symptoms affect my eyes, ears, back, legs and stomach. The pain in my head and body is severe. Their is nothing that I found that helps the pain. I would suggest doing a lot of research. I would definitely get some professional mental health assistance for family caregivers. You will find family physicians have limited knowledge of Chiari and that makes it hard to get support after surgery. I A mother will probably give u a more positive analogy. I wish the best for your granddaughter and your family.

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  • Posted

    HI there, I had gne through worse than that, I ended up a housebound, however after surgery all the symptoms gone I have my life back now, but it took 2 months of recovery. If you are in the UK call Ann Trust organisation the nurses there are very helpful also go back to your gp, ask for 2nd opinion and another scan. GOOD LUCK
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  • Posted

    Hi breabrea

    I'm so sorry your little one is having to experience this so young it's hard for us as adults. I guess the symptoms for a child and adult afer decompression surgery would be very similar? So to let you know after decompression surgery we experience low pressure headaches due to the new flow of csf. Each person is individual which how long theit recovery is. I would suggest contacting the neuo surgeons secretary and asking if you can be seen uo discuss your concerns. By routine they normally perform a 2nd mri to check they is no hydrocephalus build up. A build up of fluid. Further surgery is required for this but I would feel going back snd speaking with your ns is the best wsy forward

    Also check the ann conroy trust website or chiari support which is slso a closed group and very supportive a group I could not have gone without on my journey loads of experienced people on there not just sufferers like myself but mums who have children with chiari malformation xx

    Look us up on facebook thank you jaquie clark x

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  • Posted

    Oh dear my heart goes with you, I can not imagine how your baby feel, it must be so painful,if that was my child, I will go to A&E...I would not wait till the appointment

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