View Full Version : Ciara and her chiari
04-22-2009, 10:48 PM
We saw the neurosurgeon again about Ciara's chiari malformation. It hasn't changed since it was found. She does have a cervical syrinx which indicates that there is some pressure involved. Despite this the doctor does not wish to do surgery and I basically was told "If she were a normal kid, I would push for the surgery but with her issues I'm afraid to do more damage than good." Can you hear me screaming??? Karen
04-22-2009, 11:14 PM
I can see him washing his hands from here. Sorry it was nonproductive. Will you be going for a 2nd opinion?
04-22-2009, 11:21 PM
ARGGGGGGGG......" a normal child"....you must be spitting mad! Like because our kids have more challenges, that it changes how and what we treat? I don't think so. I hope you are getting a second opinion. Let me know if you want me to call this doc and explain things to him.
04-23-2009, 12:14 AM
So I guess I would have asked what was his idea of nomal? I mean is she not normal for Ciara? I would see a fight on my hands.
Hang in there.
My little figther
04-23-2009, 08:01 AM
What is the definition of normal?? Normal is life and the quality of life we are able to give any child. I hope you will go for a second opinion. I think that in my case Grand ma Claws would have come out - they don't often.... but this would have been one of these times.
04-23-2009, 08:34 AM
:mad: :hairpull: :boxing:
grrr, I'd definitely go for a second opinion.
04-23-2009, 09:03 AM
Oh, man oh man oh man. This makes me spitting mad. Mad, mad, mad, mad mad.
Get 'em, Karen.
04-23-2009, 09:26 AM
04-23-2009, 10:20 AM
Sarah, Keturah's mom, knows about the decompression surgery for chiari stuff. She's been through it more than once, I think. It is a rough surgery.
04-23-2009, 10:23 AM
I'm wondering if he's insinuating that the risk would outweigh the benefit because her current health status dictates this. My first reaction is to say that he doesn't want to do it because it's a waste of time given her medical history (the "quality of life" argument)... but perhaps he means that there is a large chance that she could either not make it out of surgery or develop other life threatening side effects??
Hopefully you're able to get a second opnion that is more reassuring.
04-23-2009, 12:19 PM
Karen, Use of the word "normal" aside. What does he mean? Decompression surgery is dangerous. Is he concerned that the risks involved in the surgery might be more than she can tolerate. Is that a risk you are willing to take? What would the benefits for Ciara be? How much does her Chiari affect her daily life?
04-23-2009, 12:59 PM
My daughter had the decompression surgery before getting trached and it did not help. It was a very hard surgery for her to get over. She was on pain meds for about 3-4 weeks. I think it depends on the severity of the malformation. Autumn's was really severe so the slight pressure it relieved did not help and just put her in lots of pain for several weeks. I would get another opinion but if the doctor thinks it may be too hard of a surgery for her he may be right. I know we hate when they say "normal" kids but obviously our kids are different and may not be able to handle such a big surgery that a more healthy child could. I know others though who the surgery did help--our dr. didn't think it would help much but we didn't want to trach Autumn and then wonder if the decompression would of worked so we did it "just in case". If I knew what the outcome would of been, I would of spared her the surgery but that's the chance we took.
I'd either get a more clear explanation from him or get a second opinion - or probably both. He sounds like a jerk.
04-23-2009, 05:40 PM
From an outsider's perspective I'm hoping that perhaps he was only trying to say that with typical kids you can assume a typical surgical outcome but with kids that are unique that a surgery that is intended to help can actually cause unexpected problems. That's what I'm taking his comment to mean and I hope that's what he meant. Hugs.
04-24-2009, 10:37 AM
Sorry I wasn't clear. I believe he did mean that he was afraid of the surgery being too dangerous for Ciara without absolute proof that it will help. Using the word "normal" was probably tactless but meant without malice. I am just screaming because it never comes clearcut for our kids. Karen
:hug: Sometimes I wish we could just have the answers right infront of us. I hate second guessing and doubting. :(
I would probably get another opinion- And I hate the word normal also- alot of these doctors need to think more of what is being heard and learn to phrase things more delicately and explain more of their reasons of doing or not doing something (ie medical issues/ recovery/ more harm that good)
04-24-2009, 12:24 PM
Well, I suppose that makes sense -- if the benefits aren't clear, it is a big, big surgery to take such a risk. I hope that you find a way to figure out what to do.
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