annoyed

[soccero]

has this ever happened to anyone?
so my moms friend from college comes to visit me after surgery and were talking and shes like i get headaches too maybe i should go get checked out for chiari. i dont know about anyone else but this really bothers me cause people think the headaches we get are the same as a regular headache and i think they are totally wrong! it is so different and for me it was daily pain that would put me out ! srry but that just pisses me off!
molly

[shanmomof3]

Molly make sure you look at Monday;s rant!

[soccero]

thanks for your replies I feel better now LOL
Molly

[rod44]

It is annoying however since CM is not a well recognised or understood illness people need to be excused for there ignorance, what I know about my illness I have learned my self by researching and becoming a member here.
I found when I would say to people I had vertigo there response would be “well don’t go up on tall buildings so“….I thought if I say I have Chiari they may think I am allergic to keys or some thing….. I soon learned to keep my mouth shut…lol..!!!
ROD

[shanmomof3]

I know exactly how you feel! The one I hate is after people know what is wrong with me they always ask "Well, what does it do? or What symptoms do you have?" And when I get "being forgetful" someone will ALWAYS say, "Oh, I do that all the time! It's not that big of a deal!"  Uugghh!!! It really makes me angry because as all of you know Chiari "forgetful" is not the normal "where did I put my keys"! There are days you feel like you have early Alzheimer's!!! It's just horrible!

However, I agree with the Wolf, sometimes its just better to ignore people like that. And maybe say a prayer for them!

Jorlex, I completely understand your situation! I TWO of those people! Unfortunately, they are related to me!!! I just try not to talk about around them! lol

[rod44]

That is helpful info for people heading to hospital for surgery, thanks.
My dx was by accident as well, MRI because of ongoing vertigo that the doctors could not get a handle on, they thought it was an inner ear problem, I got a small lump on the side of my neck so they sent me for the scan. The ENT doctor said I had a syrinx but he did not know much about it so he sent me to a NL and a NS. They then said I had Borderline Chiari that needed further investigating, so that is where I stand right now. My symptoms are going on for years but it was the vertigo that really made the doctors sit up and take notice.



This is a link to a soccer site check it out.
http://www.tribalfootball.com/premiership-football-news

ROD

[soccero]

thanks i know not to harp on it but somtimes its hard
molly

[soccero]

well i brought a change of clothes(pj pants and a tshirt) but didnt get into them untill the 4th day because i was puking and i only had one pair lol and befor sugery i wnt to wal mart and baught some cheap but fun things to do while i was in the hospital but did not use anything cause i was either asleep or i was screaming so i did not have much time i am a big fan of manchester united! yes i had a 16mm herniation and a 15 mm syrinx and the thing about no time to think befor surgery well i didnt need to beacuse i had my mind made up before i even saw the ns caue i have suffered since i was five years olod and been to lots and lots of nl and they said nothing was wrong and i was depressed even though i was always an extreamly happy kid. they finally found out becaue this spring i sperated my shoulder playing soccer and it would not heal so they did an mri of my neck go figure o and also i wear glasses and contacs so i brought my glasses to the hospital
molly

[ChiariWolf]

Yes, unfortunately comments like those are ones that 'well meaning folks' or sometimes just folks that simply have an 'inner need' to say something seem to always make. It turns my stomach. Anymore it's just one of those comments where perhaps I'm a bit rude because I just pretend not to hear them. I am an empathetic person and believe me there are a lot of non-chiari people out there with serious problems. But when someone does that my approach is to repeat in my mind this saying from an older engineer:

      "You just can't force the ignorant to know what they don't know."

If we let ourselves worry about the little things, then they become big and the big things
become Anxiety and kill us. Take care of you. :-) Hope you feel better...

The Wolf

[rod44]

Hi Molly,
Good for you, keep those dreams alive.

I am a fan of the English premiership….sir ails Ferguson and his crew.

You hardly had time to think from the time of your dx to surgery. I guess that is good, you don’t hneed to be suffering unnecessarily.

Some people were asking on other posts about what to bring to hospital and ICU ect, you could answer some of there questions.

Did you have a Syrinx?
ROD
  

[jorlex137]

I totally get you!!!  I didn't want to tell a certain person in my life about this because I knew they would diagnosis themselves with it right away!  I was right!  Rolled my eyes!!

[soccero]

np I totally understand I was diagnosed June 27 2009 met with my ns july30 2009 and had surgery aug17 2009so I am new to this to LOL I am lucky enough to have found a ns who says I can go back to soccer which I am so happy about but not untill at least the spring soccer is my life and I hope to play in college and for a while that dream was slipping away but now it's back LOL
Molly

[rod44]

Hi Molly,

Some people don’t respond to pain meds, I am one of the lucky ones that do.
What about sports, I assume you are into soccer, can you go back playing soon?

Sorry about the questions but I am new to CM just recently DX.
ROD

[soccero]

it was ok I was in the hospital for6days ocufor 2 I had a lot of pain though and I am some one who does not respond well to pain medication so first of all it made me sick and also it does nothing for the pain so the first few weeks were rough but now I am. Six weeks out and feeling a little better each day
Molly

[rod44]

Hi
Don’t worry about it, let your moms friend worry about her health, you concentrate on getting better.

No one can walk in your shoes, no one can experience your pain,.

So how was surgery for you?
ROD

[selmaS]

Hi Molly...I know just what u mean.

It is really annoying.....even when u r having a bout of vertigo and someone says I get dizzy sometimes too.
HA's  and chiari HA's r way different.....and a chiari HA is different than a migraine too.


"selma"