I hope everything works out for the better

my thoughts are with you and your family.
Big hugs

I'm sorry that it wasn't better news, it must be a good thing that it is at least treatable/ manageable though. You should all ignore you Mother-in-laws story, there are always worst case scenario's but they are called "worst case" for a reason. If they occurred with any form of regularity then they'd just be scenario's, right?

I will be thinking about you all and I hope that, with the right treatment, this can turn into something which Ryan lives with but doesn't have to endure.

I'm here if you need me.

Wow. At least it has a face and a name. Small consolation, I know, but. Fuck. I wish I could say something. Just find him the best doctors you can, then find better ones. I hope you get to see him soon.

I am sorry that Ryan is going through something so horrible, that is extra tough on a teenager. Your son and family are in my prayers and thoughts.

I wish you and your family my very best. Take care of yourself too Jewelz.

I will be sending you and yours positive vibes.

I am so sorry that he is going through this, and I just feel for you Momma, I cannot imagine trying to be strong and be the rock while all hell seems to be breaking loose...many prayers for you and him, xoxox T

I am glad you actually have an answer rather than more fearful thoughts of what it could be. You all have my love and support. If there is anything I can do, please don't hesitate for a second. Much love

*hugs*
Oh sweetie, I wish there was something that could be said to take away the pain, for everyone involved. Ryan is a strong lad, and with your love and support I just know he'll get through this.
*hugs*

Still feeling utterly speechless. What can I say, really? This is all kinds of fucked up, and I am sure that you are sad, angry, terrified... and any number of emotions right now. My heart is breaking for you guys. And I am just furious with the idiocy of his grandmother's comment.

BUT, like you have said, it is treatable... and that is a blessing. I am glad you will be going to him. That is what you both need.

I will continue to surround you with love and prayers. If you need anything, I am here.

I am so sorry.

Forgive me, but I'm going to forgo the typical friend/emotion stuff and assume my role as medical professional now. I don't know if it could end up helping, but from time to time I do freelance medical research, usually investigating who's funding or running clinical trials and such on new drugs (for a University hospital), and although I know next to nothing of the disease, I recall recently running across a paper wherein Mayo Clinic (I believe the one in Minnesota, which, if I recall, is their main research facility) had been doing some R & D in Arnold/Chiari malfunction. I'm not sure where the nearest Mayo Clinic is to you (possibly Rochester, Minnesota, but they were instrumental in helping my Dad outlive his prognosed 6-12 months by the better part of a decade.

I'm off today, and although my computer is even slower than usual with my dial-up due to the 3 terabytes of HD being nearly full (damn music addiction), I'll see if I can find out anything useful. Or possibly useful. And I can call some of my contacts at University of Florida Hospital at Shands and anyone else I think of. There's always a small chance that, even though it IS rare, someone in my circle may have encountered it.

All I can do is try. I wish I could do more.

*hugs*

Fuck... this has been one of my biggest fears about having children. He will pull through, you just need to be strong for him and around him. Cry and be scared when you're not.

Oh Jewelz,

i am so sorry for your son and your whole family.

I hope that you can get there soon. I say this as a mother of a teenager. He thinks he is old enough to handle the world, but he is most likely not.

What do you need to get there?
Can you make a post so that maybe your friends here can help in some way.

Please send your baby some love and tell him that I am praying for him.

xoxo
P.

lighting candles now
HUGHUGHUGHUGHUG
sending vibes your way

BTW, do you know if it's Chiari-I or Chiari-II? My neurologist friend's assistant asked. (He's hopefully going to call me back when he's not so busy - 11:30 AM here is not the best time to rreach him . . .)

I can't believe your mother-in-law's incredible stupidity.

I don't know what to say. At least there's a diagnosis. It may not be much comfort, but it beats not knowing. Now it's time to take on Ryan's condition. He's already ahead of the game by having so much love and support. You need to feel totally comfortable and confident with the doctors that are going to treat him, especially since this is such a rare condition. It's important to feel that they are attentive to any and all questions that you may have.

Try to hold onto the hope that Ryan's condition can be controlled with monitoring and medication alone. That sounds like the best scenario.

Please try to reach for that little extra hope and faith that will sustain you through this critical time. There are so many people in your corner. I'll continue to pray for the best possible outcome.

Many hugs.

Oh honey, I'm so sorry to hear this but it is treatable and it means you get to spend some time with your son which is yay!

At least now you all know what is wrong with Ryan, you can call start to deal with it but it least you now know why he has been so poorly with the headaches and blacking out etc.

You mother-in-law in an absolute arse. I'm sending her a punch in the throat as I type this!! Bloody interfering, tell her to poke her nose in elsewhere!!

You WILL get through this, and of course you've got all your friends here to send you lots of love and hugs throughout.

Lots of love and kisses to you Julie.

Emma...........xx

he looks like you. take care.

Your Family is in my thoughts and prayers

I love you all my sweet. You are my family and I think and pray for you all the time. I am here if you need me...or even if you just want a laugh. I am SURE i can pull a funny story about something I did outta my behind!

xoxo

I am keeping you in my thoughts... ((HUG))

You are all still in my prayers and thoughts. I am sorry that you are all going through this but at least they know what is wrong now and can begin to treat it. I hope that you and Flashmo can get out there to be with him soon. I will be thinking of all of you.

Okay, just start taking the steps you need to take--like you're doing. Get him to a neurologist. Get up there to spend time with him. Help him to understand someone is always going to have some horror story to tell him, like what your mother-in-law did (it's the "bad labor" syndrome. People always have to tell expectant mothers the worst labor stories they've ever heard. It's a dumb way of responding to people and too often done by those who aren't the best at empathizing.)

You know what's wrong. He has some medication now to help with the immediate symptoms. Now you follow the steps you need to take.

I'm sorry you, Flashmo, Ryan and the whole family are going through this. I know it's exceptionally hard. You're strong people with so much love in your hearts, though, you'll get through. I don't doubt that for a moment. And you've got a huge support system right here when you need us. Plus boxer love, which is some of the best love out there! Hugs to all of you.

Tell Ryan we're here for him, too. We care about you guys, so we most definitely care about him, as well, and if he needs to find a blog space to vent and all, tell him to just let us know where it is, and we're there. I'm sure I'm speaking for far more people than me and Neo on that one. We're geezers, but we're good listeners, good shoulders to lean on, and we're pretty damn amusing sometimes, too.

(Neo's son is 20 and with my teaching, I'm around late teens to early 20 year olds all the time. We're both good at talking to people that age group. )
Our love and thoughts, Jewels and Flashmo. Ryan, I know you're feeling isolated, scared and alone, but there are people out here who care and who aren't about to let you go through this alone. More hugs.

Oh, I'm so sorry. I hope you can get away to be with him soon. I can't even imagine what you all must be going through. I'll keep you in my thoughts. If you ever need anything let me know.

Best wishes, internet hugs and all of the above, Jewelz.
What a difficult thing to deal with. For all of you.
We'll be keeping you in our thoughts and prayers.

Sending some love and healing vibes Ryan's way, strong thoughts to you and hubby.

lots and lots of big comforting hugs hun wishing there was something more I could do, but know that all of your are in my thoughts and prayers

My heart goes out to all of you. Hope you are able to get to him soon.

And punch grandma in the throat when you get there!

My thoughts are with your family, dear.

wish you all the best with your situation...

I hope he feels better!!!

Jewelz,
I am so sorry to hear about your son Ryan. No person should have to deal with such an illness at that young age. You have a very strong, loving family and lots of friends to help you through this. Just hold on to one another and make sure you take care of yourselves so you can be there for Ryan. Tell Ryan he's got an army of Geezers pulling for him.

**big giant mega hugzz** to you and your son
that's so sad.....
you are both in my thoughts and prayers.....
medicine now a days is pretty speccy.... working in medical research myself... i have heard and seen some procedures that make me marvel.....
and in the US.... you are leaps and bounds ahead of us down under

take care lovely

Fingers AND toes crossed. And thank you for responding. It is always great to hear from you but in times like these if you can't I would sure understand.

Considering the fear and uncertainty you've been going through, where things stand now sounds like an improvement. I'm continuing to think good thoughts. It's easy for me to say, but, under the circumstances, I would be somewhat encouraged by the latest developments.

I needed to digest what I looked at after seeing your blog last nite.
It has a name and treatment centers, right there is a huge Plus.
As usual SocietysPliers is right there with some good
Medical advice.
Yes we're all able to give you and yours Emo support and a place to
rant and rage. Is there a way to 'pass-the-hat' because this sounds expensive.
I'm on a Flex-care system, which is 'use it or lose it', if need be let me
know which pharmacy to contact and I'll see if I can stand ya some
$$ for his Meds.
And no matter how scary Chiari is, this is worse:

And something from Dylan:
"The only thing I knew how to do, was to keep on keeping on".
All of my best to you and yours.

I posted these in my journal this morning, but I wanted to share a couple of images with you so you would see what I see when I say I am praying for Ryan and all of you. May you all find love and comfort and strength in the arms of the Mother.





I am so glad the m-i-l came through and he's seeing the neuro today!!! My thoughts remain ever with you all.

I love you!

Its hard to think of what to say at times like these, but you got alot of people and love on your side.

Love you

hey, our son is 17 too, thats a great age for boys i think. i'm thinking bout you guys...

Honey I will ETERNALLY be keeping you all in my prayers!

and I am fine. VERY weak and I get tired easily but thats from all the throwing up I did!
Eees okay tho..I will take a nap between shifts and should be good for a few morehours of work hell!

Hey Love. Wow! What a lot to process. I know that things have got to be overwhelming right now. It is never an easy thing to deal with when our kids are sick, and it always is harder to deal with the more severe it is and the farther they are away from us. I have an idea of what you are going through and I am sending you all the love and support that I can. The good news is that they found it, it can be helped, and there is hope. Those things can be over half the battle, especially the finding it part (I should know...it took 10+ YEARS for them to diagnose my son...). The "fixing" it part isn't going to be easy, but Ryan sounds like a fighter and you and Flashmo are awesome support.
Don't beat yourself about losing it...we are allowed to fall apart occasionally. Knowing that we can fall apart if we need to is what allows us to be strong and hold together the rest of the time. It's how I can be strong and firm through counseling and support my Son through the rough spots...then I bawl like a baby for a time afterward...but we get through. I have faith in all of you
As for my Hubby... I wish he was traveling for work this time. No such luck though.... His Dad was in a motorcycle accident earlier this past summer. He managed to break his neck in two places, all his ribs down the left side, and bruise the hell out of everything else. In a way it was a very good thing that he did have the accident though. When they did an MRI on his head and neck they discovered that he had a brain tumor that covered well over half of the right side of his brain. He is scheduled to go in for brain surgery on Friday. My Hubby Phqurs flew down to TX to be with his Mom as support. He needs to be there, I just wish I could be too...
Hang in there Love..... (((((((((HUG)))))))))))

baby... hang tuff.

meanwhile.. someone you know is on my blog.

XOXO!

MDF directed me here. Your family has as much good juju coming as I can muster. Best of luck to you all.

-TM

OF COURSE I'm praying for your kid and for you and Flashmo and your daughter. After all the praying you've done for my dad how could I not. Hell, even if you hadn't prayed for dad I still would. I'm just like that you know.

Sending much love your way!!!

in my thoughts

Always in your corner.

Good luck today, to you and Ryan.