Any thoughts on possible new symtoms

[eques33]

Ok, son was just dx with chiari, appt with neurosurgeon beginning of aug., no
headaches but I am starting to wonder about some other things that are going
on,he has had fatigue for a long time,maybe sleep apnea. Lately, I noticed it
looks like his pulse racing in his sleep. Then even before he was dx he was
making a weird sound while breathing, noticed in the car.

Today, during goalie training his coach came off the ice and said he was having
trouble breathing, and I asked my son about it and he told me that his throat
feels like it's constricted. He said it has always felt like that, but I think
something is changing, and he doesn't realize it or doesn't want to tell me, but
I don't want to be paranoid either. I just read this from the fact sheet for
drs. and it scared me but again I don't want to be paranoid, it seems to fit his
symptoms, especially, the pulse, breathing and swallowing.

It says. - 1: Instruct your patients to report immediately any of the red-flag
warning signs of severe brainstem
compression: breathing difficulties, swallowing/choking problems, wild heart
rate fluctuations, and/or
drop attacks. When they call you, take action. Brainstem compression from Chiari
can develop at
a variable pace, and it has been known to kill.

Fortunately I have faith in his regular dr. that they will do the right thing,
so I guess I will just call them, give them this info and let them figure out if
it is anything to worry about. Could it be getting that much worse with out headaches etc?
Any thoughts?

[eques33]

Yeah I know hockey isn't probably the great sport for him to be playing but he has been cleared to play and I have talked with a few others that their sons were cleared to play. Dr.s are worried about field hockey, but not ice. No figure!  This is one of the things that makes him very happy and we can't bare to take it away from him. But I know at some point it may come to that.  He is scheduled to see a sleep specialist and an ENT to find out about his sleep issues and he has large tonsils so will find out if that is the cause of anything and also if there is anything else going on in his throat. He has recently gone through a growth spurt, not large but I think it has had something to do with a change in his body and the chiari,either it caused the chiari or it is making the chiari worse. At least we know about it and can monitor him. Just trying not to become a hypocondriact in the process!

[mik11]

I agree with with selma I would have him take a break from hockey ! My son had alot of those symptoms, apnea,swallowing,difficulty sneezing.How old is he and also is he going through a growth spurt now ?

[selmaS]

Hi...not sure where u got that list......but what u do need to do is stop ur son's activitiesin sports...especially hockey!!!!!

This ia a big No No.......

Please see our Health Pages for things to avoid....like roller coasters ect.......


"selma"

[eques33]

Thanks so much for the support, will call doctor and see what they say, fortunately she is very thorough and will support us even though not a specialists. She is taking it seriously and is very frustrated that we couldn't get into neurosurgeon until Aug. so I know she is behind us and will follow through with the info. But it is still scary. Been trying to be calm and non-chalant but my feeling is that it is progressing, but thank god we know what it is. Sounds like so many go for years without knowing and are not listened to.  Thanks for the support, just so nice to talk to people who understand. Best wishes to you as well and what you are going through. take care

[ThePeachy1]

As a mom, I have to say from the gut, never ignore your mom instincts. they are there for a reason and it is always better to be safe than sorry. I am not a doctor and I am not a Chiari expert. But I can tell you that if I were in your position I too would be worried, and I would probably go ahead and get him in to see somone immediately bring that chiari information sheet with me and get intouch with the Chiari specialist in addition. I hope you do have Chairi specialist for your son, and please know that we are sending our thoughts your way. Believe in your self, your mom instincts are strong, they are primal. best wishes.