Just got diagnosed, help!!!!!!!!!

[Rosieboardman]

Hey I'm new to this site but anyways I'm 13 and just found out I've got chiari! At first I didn't mind but now it's sunk in and I know more about it I'm kinda scared and also worried :/ will I be able to continue my sports? (field hockey, netball, running and lacrosse) can I do p.e. In school? Any other teens out there with chiari?????

[selmaS]

  Hi and welcome to the Chiari forum.

I would suggest u have ur mom or dad also join this site as ur parents need to understand this condition.

IMHO u should not continue with those sports.....there is too much of a chance for u to get hit in the head or fall and hit ur head.....plus, at this point u have to find out if u have a CSF obstruction and the more u do creates more pressure...and the worse u will feel.

  We do have other teens as members and I am sure they will post a reply to u.

  Make sure along with ur parents u educate urselves on this condition and the related conditions. Find a true Chiari specialist to help guide u.

And know u r not alone : )

[Rosieboardman]

Thanks- my doc I was seeing before I was diagnosed has amazing neuro Contacts so I'm being seen by one of the best apparently :) and about the sports, is there nk way I could continue especially hockey :(

[selmaS]

  I would suggest that u do not do sports like hockey, lacrosse and things that physical as u will only have pain and post op have set backs. IMHO it is not worth it, it took most my life to get a dx as they did not have MRI's when I was ur age...and the symptoms progressed to a point I could no longer take it...and to do something that could cause the symptoms to return, again in MHO is not worth it.

Being sent to a well respected NS is not the same as going to a Chiari specialist, even going to a NS that knows chiari and does some surgeries is not what u want...u want a Dr well expedienced with chiari and it is a huge  diff.

I do understand how u feel, as I had many things I love that I had to give up....but we learn to adjust ....

[Rosieboardman]

The NS is a chiari specillst - the best in the uk so I've been told :) and yeah I guess it's not worth it with the whole sport thing :/

[Sexybare]

Hi my name is Dana. I am 32. It took me about 8 years for a dxs. I recomend staying away from any sport to physical or where you may get hurt. I'm not sure what the future holds but you are young and hopefully after while you may find what you can and shouldn't do. Keep us updated and you are not alone. Chiari affects us all differently but know we are all affected and here for support. What has the ns treatment plan for you?!

[Rosieboardman]

I'm not sure yet, I only got dx on we'd but have appt with NS on Monday, I will probably have surgery though. My symptoms are severe headaches, nausea, sickness, dizziness, numbness and tingling in arms and legs, back and neck pain, vision changes, pain in limbs, I also have iicp and hypertension which is thought to be related!

[selmaS]

  Glad ur NS is a Chiari specialist...that is key...as well as ruling out related conditions like IIH....do make sure they check u for sleep apnea, syrinx, ehlers-danlos and disk issues as they can also cause issues for u.

[Rosieboardman]

Will do! I haven't had MRI of spine yet though but I think I'm having one on Monday when I go to see the NS

[selmaS]

  Do let us know what u find out....remember to ask for copies of the report and the MRI when u have one done.

[Rosieboardman]

Ok! And I've got ones for my head MRI already but I'll get copies of back ones ect when I get them done. Thank you so much for the advice!!!!!! Your so kind!!!xxx :)

[selmaS]

  No worries Rosie....keep us posted  : )

[Rosieboardman]

Am having surgery on September 5th at alder hey children's hospital!!!!  Am having spine MRIs done in week or so. The doc said that if I comfortable doing sport then I could though so I don't know what to do :/ will prob end up doing sport though!

[selmaS]

  Well as far as the sports go, I know I can not tell u not to, only if u were my child I would not allow it....and myself would not do it....

U may feel diff after u have surgery....

Do post ur surgery date on the surgery date thread please.... : )

[Rosieboardman]

I know , I know but I just can't come to terms with the fact I may never play hockey again. It's so important too me but i've had to stop all my sport for the time being - it's just soooooo..... Painful and I come out of training feeling horrible :( I past out the other week so I decided enough was enough, but won't surgery make it better? P.s sorry if I'm going on about the whole sport thing too much!
And where is the surgery thread? I couldn't find it :/

[selmaS]

  There r no guarantees on how surgery will affect u....u could be better, or u could feel worse, but either way, u should avoid  contact sports as it could trigger it all to reoccur....so y have surgery to feel better ,then play a game that makes u feel bad again?

Use the search this community feature to locate threads, I will try to bump it up....

[AlexChiari]

I a teen with Chiari.. from the UK.. I reacted the exact same way.. feel free to message me though i am very new to this aswell xx

[Rosieboardman]

i guess so :/ and than you!