chiair malformation

my son is 9 he has chiari malformation and his brain hangs down 8-9mm. he is also very short for his age and fractures his bones very easy, when he fractures his bones it does not hurt him at all most the time and the next day his hand or foot is blown up like a balloon. he also went from 20/20 vision to near-sighted and has some minor swellen behind his right eye. i need help i cant find anyone to help me find out why he fractures his bones(all the test they have done have come baqck normal)why his vision has gotten bad. i was also told that there may be a link between the chiari and the bone fractures that may cause him to go blind i have too many questions and not enough answers please someone help.

[selmaS]

Hi and welcome to the Chiari forum.
I am happy to have u here, but so sorry for what u and ur DS are going thru.

I can suggest u try to get ur son to a true chiari specialist for further eval to find what else is going on with him....I have not heard that the fragile bones issue being related to chiari...but that does not mean much as I am not a medical person.

May I ask how they found the chiari dx? and what they suggested?

"selma"

[*Stormy*]

Hello and welcome,

I am so sorry to hear that you are going through this, I have 3 sons, two of them around the age of yours...so I can only imagine what you are going through.

I would agree with Selma, if you haven't seen a Chiari specialist and it is at all possible for you to do so, I would get a second look.

I have never heard of fragile bones being a symptom but have they considered that he may have another disorder along with the Chiari. For instance something like Osteogenesis imperfecta (brittle bone disease) which causes bones to fracture because they are not being formed properly. I don't know if there is any connection but this disease can also cause bones to form incorrectly which makes you wonder if it could affect the cranial formation too (possibly causing Chiari?) Like I said this is only my opinion and a lot of it is guesswork but I would definitely focus on getting to the root cause of why his bones are fracturing. What types of tests have they done for that? Have they done a bone density test? Sometimes all the tests come out normal but that may be that he isn't getting the right ones. Is he seeing an orthopedist for this? If not I would insist that he does.

I really hope this gets figure out soon, you are doing the right thing to fight and advocating for you son..so keep pushing!
Carolyn