Hi
When you say they found fluid in his spine did they say if it was a Syrinx (Syringomyelia)?
It must be very hard for a 14 year old to accept that he cant play the sport he loves but unfortunately if something goes wrong he could end up a paraplegic.
Talk to him about what sport he would like to do that is non contact, sport such as swimming would be beneficial to his health and his emotional well being.
Chiari can cause cognitive issues as well so this could be a factor that needs to be looked at, it could be part of the problem with his grades.
I feel for you, this is so unfair especially on a child, keep us posted on how things are.
hi welcome and also sorry to have you here.
It is somehow hurting a lot when young children and teens are dxed with this condition .
as far as i know boys love outdoors and playing with friends a lot .....so when he is told he cant play his favourite game of football and just watch others play ..naturally he would feel that his life is gone .one can emphatise with him fully. anyways let us discuss what can be done now.
did he have any surgery?did he consult a chiari /syringomyelia specialist dr? what did the dr say?.is he being on his own without any drs and treatment .?
In short do write ..as to...after his dx what are the steps you have taken towards his treatment?
apart from asking him not to play contact sports what other steps have been taken?
has refraining from playing has had any positive effect on his left hand (i mean to ask is it better now).
does he have any other chiari symptoms?within two years how many times you had to go for consultation as he was not feeling good .
you have not written anything on these aspects..
Please do write on such things so that knowledgeable people like selmaS here would guide you properly as to what can be done in the future.
In the mean while (you must be already aware and doing it ...but still) request you to patiently and lovingly take care of his emotional demands and comfort him with encouraging words ...as much as you can .
Before and after I was diagnosed I was very much involved with Karate. I just sat out when the sessions were combat. So Maybe you ask the doctor if he can participate but not be too active..and as for swimming, my doctor did suggest taking it up as it strengthens the neck muscles which protects the top of the spine. Ofcourse everyone is different so like I said..talk to the doctor. Hopefully he is able to smile again.
Hi and welcome to the Chiari forum.
Most Drs will say no to contact sports...I know, Chiari is life altering and with the damage contact sports like football creates for those that do not have Chiari it is not worth the risk, and he should find something to be active but safe.....I was older when I got my DX as MRI's were not done when I was your DS's age....
As I said Chiari is life altering and may change our path we were looking forward to, but there is nothing to say that this change is not for the better,....I am finding things I can do, that I may never have tried b4....so, let him know this is not defeat, but a new opportunity...I am sure you have, and I know a teen does not want to hear that...mayb find some utube videos on the pro football players that are dealing with head trauma issues...it is sad what they are going thru....and if the risk is greater for him, then why would he want to do it....mayb be he can coach or get involved in another way....???
I too am curious as is rod44 about the statement of fluid in the spine....did they mean a collection of fluid , which would be the syrinx rod is speaking of....