Hi
My son is seeing his neurosurgeon next week - his main symptom is the feeling like his throat is been squeezed - and then he cannot breathe - the doctor says it cannot be the Chiari !!!
Please if anyone feels this - please send my your symptoms and how it feels _ I want to print and take to him as he wants do all other tests.
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Presenting symptoms for children are often different than adults.
For more information on pediatric chiari, visit www.conquerchiari.org/pediatric/pediatric-index.html
A 2002 study (Greenlee, Menezes) found that oropharyngeal problems – having to do with the throat – were the most common presenting symptom among very young children (3 and under). Common symptoms included: choking, trouble swallowing, stridor, chronic cough, and poor weight gain
Among older children, scoliosis - an abnormal curvature of the spine is a common symptom. Although scoliosis among teens is not unusual, Chiari related scoliosis often involves unusual curvature types and locations
While some Chiari children
Do all kids with Chiari develop scoliosis?
In reverse order:
No, most children with Chiari do not develop scoliosis(but up to 20% of “atypical” scoliosis is due to a neurological cause, of which Chiari is one of the most common). Therefore, many patients get an MRI prior to scoliosis surgery to make sure there is not an underlying cause.
I agree with flerrie’s response. But let me take the line of thought a step further. It appears that you want to print out responses on an Internet bulletin board to bring to your child’s doctor(not sure what kind of specialist you are seeing) to try to convince the doctor that you are right and the doctor is wrong.
That may not be the best means to get optimal treatment for your child. I would suggest that getting additional opinions(and seeing a neurologist or neurosurgeon with Chiari expertise) may be a better venue. Trying to tell an MD with limited Chiari experience that they are wrong and you are right is almost always a losing proposition.
Again, the best route may be to get additional MD input.
Hope these thoughts help!
Hi
Thanks for your thoughts and for replying. I would say I am more gathering information. We live in South Africa - there is not many doctors who know about Chiari - he had surgery in 2015 and was fine for 3 years - his MRI after surgery is perfect- the fluid is flowing and it even looks like the Chiari has moved up a little back into the cavity - not much - and his syrinx have shrunk but he still gets the feeling like he cannot breathe - so our only option is to medicate him - but the doctors keeps saying it is in his mind and he is been naughty - he has not attended school for 6 months as when he cannot breathe he panics and it goes into a full blown panic attack - we are seeing a new doctor - just for meds as we have no other option but to medicate it as anxiety otherwise he will never go out the house - the doctor wants him to do a sleepover - he has been prodded and poked so much and had sleeopvers where was connected by head and hearts and nothing came up - so I am trying to tell the doctor that this is a symptom of Chiari but he is insisting it is sleep apnea - and even if it is - he cannot have another operation but anyway I will never even get him there - he will run away
Hi i have recently been diagnosed with chiari type 1 in april 2018 and I often get this feeling too. I don’t feel like I cant breathe but it feels like someone has hands around my throat and squeezing. a bit like the blood/oxygen isn’t getting through properly. when I told the doctors this in the hospital they looked at me like I was crazy too. That’s the best way that I can describe the feeling though.
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My son gets it all the time and he has been decompressed - very scarey - he did not attend school for a year but now back at school - seems to come and go
I have this near my throat. My neck gets tight. I can’t say it’s entirely from the chiari as I have some tmj issues on the same side of my face.
I really believe it is the chiara - as what you describe is exactly what my son gets - if I watch him - he often has his hands on his neck pulling on it
I make him chew bubble gum - not sure if it works but stops the anxiety - we have also put him on meds which probably not right as he does not have a chemical imbalance but the pressure -but he needed to go back to school.
Out of interest - do you have mood swings
He does and then it is not his fault but everyones - he will do and say things and then say he never said this. I read that biopolar is sometimes associated with Chiara
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