6 yr old diagnosed with Chiari

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Hi

My 6yr old daughter was diagnosed with Chiari last year after we found her unconcious in bed one morning. She ended up on a ventilator in ICU with brainstorm compression (they thought it was encephalitis), but made an amazing recovery and eventually was diagnosed with Chiari from her follow up MRI.

She had decompression surgery 4 1/2 months ago and since about 2 months ago has been wetting the bed every night, sometimes twice a night. Has anyone out there experienced this? She's been discharged from neurology and had no follow up from neurosurgery since her operation and I don't know whether to contact her NS (who is 3hrs away) or see our local family doctor (who has no Chiari experience). Is this a possible Chiari symptom or just one of those childhood things?

Her NS was fantastic, but feel like now she's had the surgery, there's no real support for what we do next (we're in the UK).

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7 Replies

  • Posted

    Hi there ,

    Glad to know that your daughter is doing well after decompression surgery.As for wetting the bed there are all sorts of possibilities and I think only a dr. Can find out the real cause.

    Would you mind sharing with me for how long was she hospitalized for her surgery...how many nights in ICU...was she under any pain...how long did the recovery take...I m asking all this cos my 6 year boy is also diagnosed with the same.He is asymptomatic and I am not sure whether to go for the surgery or not.

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    • Posted

      Hi

      Her surgery was really straightforward and she was out in 5 days. No ICU this time and she was up and out of bed 2 days after. She didn't find the pain too bad (morphine drip for 2 days then just oral meds) but her pain recognition is fairly screwed up. The vomiting was pretty miserable though. We had about 2 days of uncontrollable vomiting which she was upset by, but it passed pretty quick. That was probably the worst of it. She did get frustrated with weakness and tiredness after, but she was back in school after 2 weeks. I would've liked her to stay home longer but sheis a pretty tough cookie and was keen to get back to normal.

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  • Posted

    Hi there.. I'm sorry to hear your daughter is so young and already going threw so much. I'm 33 and got diagnosed last year had the decpompression opp in Jan this year and havnt walked since it's an absolute joke. No support what so ever out there for this nasty disorder and nobody even seems to be clued up on it and look at you like your making it all up. I can relate to the urination problem. Since my operation I et no prior warning to needing the loo it's a case of most of the times my warning is when it's already happening. I'm in talks with events places on possibly setting up some sort of support charity site where us " chiar-ians" can group together and make ppl listen. I will keep this site posted as to my progress while I'm setting this page up. I wish you all the best and my advice is " you no your daughter and no her better than any stuck up man/woman sat behind a dest with letters after there name" I asked my surgeon do you have this disorder?? Do you have family member with it?? His reply was no. I said so how the hell can u tell me that I can't be feeling how I am? What's up did it not say in a text book it could be this bad. BELIVE me I've spoke to ppl who have lost family member threw it as there is no cure or prevention all they can do is make us comfortable. ITS A JOKE! More awareness needs to be done more people need to no about this. Take care Hun and special hugs for your princess xx
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    • Posted

      Hey there! I feel your pain and at times it really gets me down. One day I feel like my "old" self, next I'm crippled with pain and exhaustion (which means a day sleeping in bed).

      I was diagnosed in December 2015, after a fall in March 2015 left me with a weird sensation and growing pain.

      I was diagnosed with a Syrinx (c2-T10) and Syringomyelea.

      I had to take myself to hospital in Jan 2016, the pain was unbearable. I was admitted under the care of a surgeon (Mr.Mathison) he did further scans, and I was then diagnosed with Chiari 1 Malformation.

      I didn't take to long to make decision to go ahead with the surgery (Foramun magnum decompression).

      I was out of it for 4 days, when I came round, I can't even describe how my head felt.

      I was 3 weeks in total in hospital. Off work 5 months, just started back, I'm still really struggling with the pain I'm left with. But Lidocane patches are a great help to me. But some days are just a right off!

      My partner is also disabled and in poor health, but we find strength in each other and support on the worst days. We have to stay positive.

      I count myself lucky for now, I watched people come and go in hospital, some incurable, some left blind etc... I can walk (although in pain) I have my sight and I have 3 beautiful nieces and nephew who lift my spirt when I'm feeling low.

      Hang in there, there are people out there who understand what you are going through and how you feel. 🙂X

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  • Posted

    Hi Mrs All sorts,

    If u don't mind could u pls tell me if ur daughter had any symptoms prior to the surgery.Have u got an MR done after the surgery if yes has the syrinx gone or has the herniation regressed?

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    • Posted

      Hi

      She didn't have any of the classic symptoms (headaches etc), just this episode of brainstorm compression. She also had rage attacks and some choking incidents that they felt were connected. She'd had a similar but unexplained brain swelling episode as a baby, so the decision to go for the surgery was fairly easy, more a preventative action than to relieve any symptoms.

      She's not had a following up MRI yet, but her previous MRI showed no syrinx, just the herniation down to C2.

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