Chiari Awareness

[denverluv]

The other day I got hit in the back of the head while the kids were messin around. Right away the pain brought me to my knees, and I have not been ok since.

I am used to having the headaches, but none as bad as this. It has been awful, terrible. I am now taking Vicodin, which is not something I wanted to take, and it still is barely taking the pain away. My only light at the end of the tunnel is knowing I will be having the surgery soon, and a couple of months after should be feeling ok.

The reason I am posting this is because I know people with Chiari probably experience these headaches constantly, and the pople who can't get a diagnosis have to really be struggling. It's not that I have never cared before, but like they say, you can sympathize, but you can't empathize unless you have been through it.

The good side to this is I am a fighter for the underdog. I cannot imagine people getting blown off by doctors when they hurt like this. What would be a good starting point for helping to raise awareness? I cannot go through this pain knowing others are going through it with no one helping them because they don't know anything about this.  

[selmaS]

In the top right corner of this screen u will see My Medhelp as part of the tool bar...under that is ur inbox/login/my shortcuts...then watch this discussion/email this...then u will see 4 links under that....including Health Pages..
Directly under that....is a box search this community...u can put a topic or a member's sign on name to locate a thread they posted in...from there u can click on their name to get to their profile page.

Hope this makes sense : )

"selma"

[denverluv]

Selma- How do we look up another member? I would like a necklace too- just went to your profile to look at the necklace- I always feel weird looking at peoples profile even though that's what it is there for :)

[selmaS]

The necklace was made by another chiarian yLaurie...she is on here when she can...u should be able to  use the search this forum to find her profile to send her a message.

"selma"

[denverluv]

Sorry I haven't responded - stupid headaches.

I will look into a walk here in CO- if my memory is correct I don't think there is one, but I am going to check it out.

Anyone here living in CO? Is there a support group here?

[hernandez7]

i'm with you there on trying to get the word out.i had never heard of it.and since it has been frustrating.you would think a nuerologist who went to school to make all these big bucks.would want to check further into things when he sees someone who is having all these symptoms and he notices that their head is measuring so big.especially when you tell him a sibling has to keep having spinal taps cause of spinal fluid pressure.instead of sending us on out way and saying he would see us in a year.here i'm just a ordinary mother with no schooling like him who had to keep fighting for answers.to learn about something i had never heard of.nor has alot of people i have found.it is very frustrating.and people look @ you wierd when you are trying to explain it.i would definately like to help get the word out.i believe its something that people need awareness for.selma i loved the chiari ribbon and necklace on your page.where can you get those to help show awareness???i am very grateful to this site and the friends on here who are willing to share their stories and advice to help people like me learn more.thank you all!!!!

[*Stormy*]

I have that battle too...

In Canada..there is no walks for Chiari that I have found so I would have to be the one to set it up which at this point I don't feel like my health is good enough to take that on.

I think one main way to help is this forum...helping others that are going through what you have already been through. For me, trying to connect ppl with this in Canada will probably become a focus too.

In the future, I am planning to go to our local newspaper with my story and see if they would like to run something on it. Who knows...they may be interested..then again they may not..worth a try anyway. If one person sees that article who is having the same problems and getting the runaround..and I help them somehow..then it's worth it to me.

As I said..projects for the future!

Carolyn

[selmaS]

Cool. this is only the 3rd yr for the walk, so it does not get much exposure...but like I said a good place to start in ur area for awareness : )

[gmaldonado]

oh ok. I've never heard of the walk here in SA. I'd love to register. I'm going to have to look into it

[selmaS]

There r set locations and u register...but u can get family and friends involved too.

[gmaldonado]

Do we just reach out to ppl and let them know what we're doing..till they pass the word along??

[selmaS]

You all can start with the chiari walk in Sept !! We do have a thread on it...and build from there.

[gmaldonado]

I'm lost. My memory wont allow me to remember what would be a good starting point. But I'm right there with you. I've been thinking alot about being an advocate and doing something here in San Antonio to raise awareness. I see posters and advertisements for clinics specializing in MS and other diseases but NEVER have I heard of Chiari research here in SA IDK about other parts of Texas but I truly would love to raise awareness. I'm still hoping to schedule an apt w/a specialist here in TX. The problem is that I would have to have surgery w/a non specialist bc i wouldnt have anyone to drive me back and forth to another city.