what can i do??????????????

[ile1204]

Hi my name is ile I am 14yrs old and have been diagnosed with a malformation and so far it really ***** I cant do anything I was doing b4 I found out.....I cant b a cheerleader anymore and I just made captin!!!!!!!!!!!!UGH!!!!!! I cant text all the time or b on the computer alot or watch alot of tv!!!!!! I wanted to know if I can go tanning and will it be ok bcuz of my malformation? my dad just bought a tanning bed 4 r house n i really want to use it!!!!!!!!!!!!!! CAN I DO THAT???

[jiggle93]

Welcome Sweetie.  I am going to asume that your stopping cheerleading because you can no longer do stunts? I get that if thats the reason, however, would your team allow you to stay on and choreogragh for games and competition?  Maybe you cant fly, but this is still a very vital part to the team. Just a suggestion.
As for the tanning. I suffered 3 degree burns on my face about 20 years ago from a snow skiing trip. I can no longer go out in the sun for very long and must wear spf everyday. I wear a hat anytime I'm out.  I have discovered that a pain free way to look sunkissed is to go to the spray tan places. Some of them are quite good and looks very natural. Go lighter on your first trip to get a feel of how the color looks on. And they do last for quite a while.  Give it some thought.

[selmaS]

  Hi and welcome to the chiari forum.

We do have a list of activities to avoid with Chiari and syringomyelia...it is in our Health Pages, scroll to the bottom of this page to locate a link.

As for the tanning...wait, talk to a Chiari specialist after u have been tested for related conditions like Ehlers-Danlos as skin and sun issues can affect u.

  So until u know just how u r being affected, I would wait, hold off until u talk to a Dr that has the experience in these areas and has tested and ruled out these related conditions.

   "selma"

[linnielou232]

Oh honey, my heart goes out to you.  I didn't find out I had Chairi until I was in my 40's.  I am misunderstanding also.  Why did you have to quit cheerleading?  I'm thinking the noise causes HA's.  I'm just guessing, but I wanted to give you this helpful tool I have found has saved me from not doing what I enjoy because of noise.  Get some ear plug's.  Put them in when around your friend's or wherever it bother's you.  No one need's to know you have them in.  You will still be able to hear, but it just tones down the noise a little.  I know how you feel about the tanning thing.  I used to love to tan.  Just wanted to ask if you are on any Med's because this would make a difference if you can tan or not.  Just make sure before you tan.  We are here for you, as someone mentioned above you are just strarting this journey.  As for me I have had surgery,  and having Chairi is scary, but every one has something they have to deal with in our lives.  Our's is Chairi.  We will get through this together.  Just know your not alone.  Come talk to us any time.  We will help you understand the best we can.    Have a good day

[megthp]

So sorry to hear about your diagnosis!!  I'm curious though - you said you can't do a lot of the things you did before, like TV or texting or being on the computer.  Is it because it makes you feel sick, or did someone tell you there was some sort of risk involved with those activities?

I can understand about cheerleading (although that really stinks and you must be so frustrated!!!) and why someone would tell you that you shouldn't do that, but the others don't really make sense to me unless they make you feel sick...

[bookworm79]

I just want to offer my biased opinion and though it may sound judgmental, it's not.  You do what is best for you.

I am 32 yrs old and the oldest of 6 brothers and sisters.  Every time people meet me or my whole family at gatherings etc, they are shocked to find out I am the oldest by several years.  They always assume I'm the youngest.  The reason - I'm very pale and never could tan and stayed out of the sun.  I don't wear makeup (though I should :-)  ) and I use a facial moisturizer with spf every day.  And I've never smoked.  Please don't ever start.  It ages you too.  I am actually taking a female relative to get a face lift next week.  She's widowed and too young to spend the rest of her life alone and wants to get back out on the dating scene.  She has super deep grooves in her face.  See this link for example.  I'm not even joking.  This is EXACTLY what her wrinkles look like.  NO KIDDING!  And you should see her neck.  I swear it looks like a 1,000 yr old turkey gobbler (I can joke because she says it about herself all the time and sadly it really does look that way).

http://www.methodsofhealing.com/files/2010/03/Home-Laser-Treatment-for-Wrinkles.jpg


I am not exaggerating at all to scare you.  Swear on my sister's grave this is what she looks like.  She tans EVERY SINGLE DAY - even after having skin cancer removed twice!  Yes, you heard me.  Skin cancer, twice.

Guess how old she is??    46.  

Now at 14 I realize that may seem ancient to you.  But if you do a little research or look at your relatives, no woman should look like this at 46.  

I personally would discourage you from tanning.  But as I said, it's your choice ultimately.

[Rylanesmom]

I am sorry about your chiari.  It is life changing and we all grieve what we could do...I can't imagine being a kid.  You are at the beginning of this journey.  You will work with your Dr to find a plan.  Do you have a chiari specialist?  I have a daughter your age:) God bless you I will be praying for you.

[Rylanesmom]

They are trying to pass legislation regarding minors and tanning beds because os the side effects of tanning.  I don't want to tell you tanning is safe because it is not.  It can cause cancer.  I did tan as a kid and understand the desire.  I don't see a problem with it and chiari yet there are risks involved.