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Avatar universal

my grandson

my  grandson charlie has recently been diagnosed with a type 1 chiari  we have an appointment with neurosurgeon 24th july he is 3 yrs old has  nystagmus  my brother had  hydrachephlus in his early 20s and has had several ops  shunts  put  in but  although he is ok  now he is still left with some slight disability  since looking on chiari forums i think this may be hereditary  my brother was not diagnosed with a chiari did not have mri in those days is there any chance that charlie can get the treatment now so he will not have to go through  what my brother did .
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Avatar universal
Im sorry that your GS has this Dx.  And for your brother too, who must have suffered.
I dont know where you are, but Duke U is involved in a genetic study of CM; your family may want to contribute to the knowledge base, especially if future children are planned.
Helpful - 0
1823499 tn?1370090289
I am so sorry to hear about your dear GS. I will never understand why the lord lets children be sick. I bet your brother may have same thing but couldn't be dxs properly for it was nott known about. And without proper testin impossible to find. Your GS is young and he will bounce back, I have faith. Neer undereatimate our children. They do amaze us. I have 2 boys ages13 and 15 and everytime they have a headache I hope and pray they didn't inherit my chiari. I plan on havin them both tested here as well. Just so I don't need to wonder and hopefully comes back normal. Stay strong!!!!
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620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

Once ur GS has more testing and is seen buy a chiari specialist it will be easier to get an answer.....sometimes chiari is acquired, and sometimes it is congenital....do u know which Charlie has?

Hydro can be a result of Chiari and chiari can be the result of hydro....it is very round circle with it and no real start sometimes....

Chiari is the malformation of the skull, many times it is determined by the herniation, which is the result of the malformation...so it can get confusing....
and y a true specialist is needed.

Next, with children so young they tend to want to do a less invasive procedure which may lead to more surgeries later on.....it is a temp help, and sometime it is a very short lived help.....

That is not to say that if Charlie is a surgical candidate that he may not end up with the same issues as ur brother, as hydro can develop post op, as a result of having this surgery....all  major surgeries have risks, and u have to make sure the benefits out weight the risk.

Find out just how his chiari is affecting his overall health...and go from there, do not rush into nething.

I am happy to welcome u to the group, but so sorry for what ur GS Charlie is going thru as well as ur family, know u r not alone : )
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620923 tn?1452915648
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