You know u have chiari when~~~~~~~

finish the statement.

This is a fun thread we have done b4...seems the right time to do it again......

[lu7997]

You can't finish a ......... What was I saying?

[selmaS]

LOL....very good....

U know u have chiari when  all ur friends r online.....

[jacmurphy]

You know you have Chiari when... you know how to spell it!

[lu7997]

Lol. I like that one.   Lol.  


You know u have chiari when you know more about it than 90% of doctors

[niki3350]

You know you have chiari when you cant remember what u were doing 5 mins ago....

[lu7997]

...when you wear sunglasses in a store, on a cloudy day, well just about all the time...

[jacmurphy]

You know you have Chiari when having only a dozen symptoms is a good day.

[Jennyfoo]

You know you have Chiari when ....you thought of a clever thing to write here, but got distracted for a minute and now you can't remember what you were going to write.

[dkdean]

You know you have Chiari when....

you tell your kids to 'go ahead and get in the cupboard' when you mean car...



....and they know what you mean!!

[CB1122]

You know you have Chiari when... after reading all these posts I find myself nodding and laughing and I don't even have a diagnosis yet!

- especially the cupboard... I do that ALL the time!!

[niki3350]

You know u have chiari when you take yor meds then cant remember you did... then take them again....   Oh dear!!!!

[chiarigirl11]

you know you have chiari when a person says tonsils you think of your brain and not the tonsils in your throught! LOL!

[blondeballerina07]

you know you have chiari when someone says they have a headache and all you can do is laugh.

you know you have chiari when you have seen some 12 odd different doctors and ended up with 15 different diagnosis and still no relief.

[jacmurphy]

You know you have Chiari when every time you stand in a Queue you look at the person in fronts neck and think.. what size herniation have you got?

[lu7997]

You know you have chiari when. Your 5 year old asks someone complaining of a headach if they have "a keytari. Too.". : )

[*Stormy*]

Ha ha ...I can relate to all of it...

You know you have Chiari when you can not only spell it properly but can also SAY it correctly...most of the DRs I know CAN'T

Also, you know you have Chiari when strangers look at you like they think you are drunk when you are walking around the campsite....or anywhere for that matter..

[soccero]

u no u have chiari when u miss more days of school then u make.
U no u have chiari when the attendance office people know u by name.
Molly

[selmaS]

u know u have chiari when......

u realize something u felt was normal is a symptom.

[emza1910]

u know you have chiari when...
the pains never goes away regardless of the pain relief tabs..

[lu7997]

You know you have chiari when.. Your have padding up on corners and tables. And you have no baby in the house

[maddmark]

half the time you feel like a medical professer explaining to people what it is. and half the time feeling like a medical student trying to learn what it is.

[stephanie_C]

You know you have chiari when.... you have to stop playing with two year old daughter after only five minutes and she says "cause you have a headache?"  :(   I mean does she even know what a headache is or is she just repeating what she's heard me say over and over??

[4inline]

you look under the counter in the cabinet for.....something.  You sit down on the floor and wait for it to come back to you.  After looking around in there you see it.  Oh, yeah!! It's the pill box you were looking for to put your meds in because you take so many you can't remember whether you've taken them or not.

[lilmiss1999]

U know u have chiari when your NL askes u to keep a headache diary over a 2 month period and the only three days filled in are the ones without the headache!

[rod44]

YOU know you have Chiari when you cant put your hands over your head, coughing causes you to almost pass out........

[trippmusic]

you know you have Chiari when.....everyone anxiously watches as you go up and down stairs to see if you're going to stumble and need to be cuaght.

....the words "I hurt" are normal everyday, several times a day, vocabulary.

....your children feel they need to be the parent and care for you instead of the other way around.

.....you're told what to expect for NL and NS and when you go see them they say exactly what you were told they would say.

....you feel like you have some kind of medical degree because of explaining what Chiari is to people over and over.

[dkdean]

...when you say something completely wrong and your 5 year old says "I think may your brain is having a hard time working right now"


this one comes up a lot, but ....when explaining the 'condition' takes sooooooooooooooooooooooooo long, it's easier to say "It's commonly misdiagnosed as MS or fibromialgia (fibromyalgia)" and then people start to understand.

[Ojosgris]

When you go to a Doctor and tell them you have Chiari Malformation and they look at you strange for a moment then they pull out there i-phone or lab top and start to look it up.

[pamk5]

When you go to bed at night nervously anticipating what kind of symptoms you are going to wake up with.  Praying for a good day and no pain!

[sanukilady]

When you have to go to physical therapy to get your exercise because anything unsupervised or unprescribed could paralyze you or knock you out with a 1-2-basilar.

When a headache where you can tie a scarf around your head and one eye but still move around is...a good one.

When your major victory of the day is being able to take that first step even if it took you 30 minutes to do so.

[classiechic]

Wow.....I really wanted to post a statement too, I really knew exactly what to type and it was a good one. I forgot after reading the rest of the posts. Thanks ya'll. I laughed and cried at the same time.I can totally relate. :/

[Stephiec79]

you know you have chiari when your husband steers you away from the breakable section of a store (because your are unknowingly walking straight for the glass shelves...Ooops!!).

you know you have chiari when your husband is picking you up before you even know you're about to pass out at said store : )

[classiechic]

You know you have chiari when you massage your own neck, back, legs and arms.
....when you're symptoms match anxiety and you can't differentiate the two.but then you know its both.
.....when you're kids know more about it than medical professionals
...........uhhhh I forgot this last one.:/ I think it probably would have made us laugh. :D

[mdavid924]

This is a fun thread...makes me feel like I belong because I can totally relate.

You know you have Chiari when...
       ...you have that burning pain on your shoulders every night making you toss and turn to find the "right position and the right pillow for tonight" -  thus you rarely have a good night's sleep...and that is your normal. Wait until you have that headache to come along with it - there goes your sleep...

      

[classiechic]

You know you haveChiari when.... you know all the family Dr's and ER Dr's in your town plus a few others by name, and they know you too.
Ps......now that I have my diagnosis, I'm bringing my MRI reports and disk to all local hospitals and Drs offices to inform and educate :)

[Majesty28]

When your young daughter tells people that I think they took out mommy's "remember" part of her brain when she had surgery.

[selmaS]

  Hi and welcome to the Chiari forum...that is just too cute...how old is ur DD?

  "selma"

[amynluv]

Wow, I don't have a dx, and I've only recently learned of Chiari, but it explains soooo much...and this list is awesome!  I laughed out loud at a few of the things I didn't realize I had in common!

[yablondskie]

Everything seems to be wrong with you and every Dr. you see runs blood tests and tells you that you are healthy as a horse!

[STL5]

I don't know if this is chiari or senility....You pack up your kids to bring them to daycare before you head off to work and when you are almost to work realize that you forgot to drop off your kids...  

[julieg_rn]

...you actually get enjoyment out of knowing other people are in the same "boat" as you. Thanks to you all!

[achyten108]

-hate talking on the phone.

- showering or bathing is hard work.

-weakness and pain in legs,,etc.

-going to the hairdresser is torture.

-making lists and lists,, losing lists

so many things to mention,, would need a whole page...lol

[Cryxus]

you know you have chiari when...

You read Dr. John Oro's poem "So I Say" and cry because someone understands.

[Stephiec79]

@ achyten108...so true about the lists & lists! UGH!

@Cryxus...that poem makes me cry, too!

My "you know you have Chiari when" for this week is when you go to tell your kids not to get wet when they go outside and instead say "don't get whacked!" or you tell your husband that your kids need dance bathing suits, when you actually meant bathing suit cover ups or you tell your friend as you leave their house that you're leaving through the garage door, but in actuality, you are leaving through the deck door!!! Ah, the joys of word recall...or the lack there of!

[HeatherD1975]

I have been dealing will ALL of the symptoms listed in the posts and in the poem...I thought I was going crazy, NO ONE understands.  To be honest at times I've felt like I've had no options or will to live if it weren't for my kids.  I saw many doctors and gave up a few years ago but recently I was sent to a neurologist that did EMG's because the orthopedic doctor I was seeing initially thought that thought I may have carpal tunnel because of all of the numbness in the arms & hands.  His testing showed no carpal tunnel so he ordered an MRI of the neck maybe a pinched nerve and sent me to a neurologist. I didn't tell the neurologist of all the years of trying to find the cause numbness extending down arms into the hands in addition to head pressure, pain in my neck, memory loss/saying weird stuff, ringing in my ears, imbalanced, light headed, head pounding to the extent I feel as if I'll pass out if I bend over laugh or cough and sometimes when I sit my chest feels tight just below my bust. I also have a lump in my throat all of the time, I can feel every time I swallow.  I have panic attacks because I get so scared sometimes. After the test and seeing my MRI he said that I have low cerebellar tonsils and ordered and MRI and MRA I have done tomorrow.  I feel like this all happened for a reason...finally I may get help.  No official Chiari diagnosis yet, I see him for the results next week…I really feel like it is getting worse the pressure won’t stop!

[Mannas]

You know you have Chiari when...wait...what was I doing again???

[rod44]

lol I often wonder are we better off not knowing we have CM.

The next time I see my NS I am going to tell him he got my diagnoses wrong, the MRI was wrong, the Radiologist who read the scan was Wrong. I will tell him I am just Anxious & Depressed. Reverse psychology with the expectation that this approach will get him to see the obvious. If it walks like a duck, quacks like a duck, looks like a duck, it must be a duck :)

[selmaS]

quack quack quack.........

[pixiedust77]

you know you have chiari when you

cant find the keys when they are in your hand, or your sunglasses  when they are on your head,or your wearing them... when you put the milk in the cabinet  take it out to put i up cause you know it dont go there and have to think... where does this go...

i wonder how long i will be this great full to read about people like me...

[Stephiec79]

you know you have chiari when a sudden attack of head pain comes on while you're standing in the kitchen and because it's so bad you ask for a couch pillow to be brought to you to lay on the kitchen floor...and your family thinks its completely normal!!!

[itsy1]

I know I have Chiari because I have turned into a duck - waddling all over the place with my kids following behind me (to steady me)

Majesty28 - My daughter has labled me with a "forgettery" - she's my best reminder there is

when your son can use his outside voice - and you don't notice it

when --- oh look something shiney

[cewilcox]

When u put your keys/phone/glasses in a certain place so you don't forget where it is but you still look around for them everywhere and forget!!

[itsy1]

you have your special pillow, the only one in the house that makes you comfortable - a pox on those who steal my pillow!

[beckyrudy]

you know u have chiari
    when all you have to do is look at your spouse in that special way and...he rolls his eyes and starts rubbing your sore neck.
     when you look up and realize everyone is staring at you becuase your 20 and sitting in a shopping cart, while your friend pushes you around the store...maybe that ones just me but i hate the lights!

[dyinginpain]

You know you have chiari when...
The ONLY thing that's not too loud for you is total quiet. (My kids are finding this quite bothersome lol).  
Not only am I always at a loss for words now...I can't spell or type them anymore!!!

[Mia_lilly]

You get in the shower, busy thinking about your chiari. After about 5 minutes you notice your shampoo isn't working at all like normal. Spend a few more minutes looking at said shampoo and use a different one, same again. Its only then I realise a vital element is missing! I forgot to turn the shower on. I spent a good 10 minutes in a waterless shower this morning. I'm generally quite flaky but that's a first :)

[itsy1]

Oh lordy Mia_lilly!  

I've carried a dozen eggs in my right arm and tried to open my door (I'm right handed but it's my "bad" side).  Only to drop them suddenly all over my front steps.  Eggs in 100+ heat are so much fun!

I told my son to "go wash your bathroom!" in a stern mom voice yesterday.  
Uh, the boy's 8 and doesn't clean bathrooms.  I meant "go use the bathroom!".  He and his sister laughed all day!

[Chula1968]

Wow- these are so true! I finally found a group who understands the frustration, pain and forgetfullness. You know you have chiair when - you are always apoligizing to your spouce for loosing track of things, yelling for no reason, forgetting to turn off the gas stove...I got lost in the car the other day- I couldn't remember how to get home- I was a mile away...

My family has started a book called Gracisims- of all the crazy things that have happened since the car accident and then the discovery of the chiari...some of them are too funny...

[selmaS]

  Hi and welcome to the Chiari forum.

When u started I thought u were going to say u did something else....cuz I did something similar...I went to shampoo my hair and no sudz...and I couldn't understand and a few times didn't notice, and wondered y my hair seemed as tho I never washed it.....I used cream rinse not shampoo...duh..I think this went on for a month b4 I figured it out too!!!

[luvmy2grls]

you know u have chiari when........  you are in mid sentence and stop talking because u know u are about to say the wrong word for something and just can't spit out the right word....  I do this several times a day.  My friends and family still haven't gotten used to it.  They get this shocked look on there face and say " what, is something wrong"?  LOL

......... you would rather stay home.

[luvmy2grls]

I forgot to add theses two

You know u have chiari when u are still up at 430am and still can't sleep.....

You know u have chiari when u flush the toilet multiple times because u forgot u already flushed it.  ( this happens a lot to me) lol

[tracylb13]

....when you go back to the doctor over and over again for these "headaches" and they tell you to cut back on your caffiene.  And when that doesn't work and they have run out of ideas they tell you "It's all in your head!"  So you go to a neurologist on your own because your doctor wouldn't refer you and damn it turns out: IT IS ALL IN YOUR HEAD!!!!  
....when 18 years after surgery to remove part of your skull to relieve your symptoms they suddenly re-appear!

[selmaS]

  HI and welcome to the Chiari forum.

Thanks for sharing on this fun thread...it helps to vent in a fun way all we go thru to get the proper help for this condition.

Glad to have u join us, sorry for the reasons that bring u.

       "selma"

[murryj]

This made my kids laugh so hard....Thank you...we resemble that remark!

[murryj]

You know you have Chiari when...
You used to get ready for bed by putting on a pretty nite gown and some perfume hoping you get lucky...
Now you get ready for bed by putting on pain cream, a shoulder brace, neck brace and cpap mask, then hope you will get some sleep and not wake up with a headache...

[selmaS]

   So......
  .....u r still hoping to get lucky...lucky enuff to get some  sleep !!!!

[murryj]

I guess luck is relative...sad but true...LOL
If I could, I would jump up on the bed with all that on and start singing Rod Stewert...♪♫ If you think I'm sexy...and you want my body♫♪
LOL

[selmaS]

  LMAO...thanks for that image....too funny : )

[drewlevas]

You know it ... When people ask you if your for real!
       I had a teacher-parents meeting yesterday and I wanted to ask a question and I could never get it out! After a few minute I still coudnt get it strait out so I stumbled out of the room and the teacher asked me if I was real!!! So my husband had to explain everything :-)

[2009Zipperhead2009]

U know u have Chiari when...after describing yourself to a stranger they thought u were talking about your grandparents.

...when a good day is having less that 23 hours of pain of some kind.

...when you can't make reservations at a restaurant because you can't remember where u made them.

...when reading these posts not only can u relate, but u also can laugh when others don't see the humor.

[Debi813]

     You know you have Chiari when~~~~~~~~

    You are playing bingo and you forget to mark your ticket !

[gagirl74]

you know u have chiari when: u hold urself up in your own bedroom with a debilitating headache that wont go away for 2 DAYS!!!!!!!! and everything u take ..doesnt work. and ur husband and children dont even ask u what's wrong anymore cuz they know the answer will be  " I HAVE A HEADACHE AND DONT KNOW WHERE I AM  (most of the time)

[bookworm79]

- You know you have it when you accuse your husband of moving your cellphone and now you can't find it.  He says you're always forgetting and misplacing stuff, and you're on the verge of tears because you can't absolutely call him a liar because you know there is the possibility you really don't remember and then when you're totally and completely frazzled and want to punch the wall you look down and the cell phone is in your hand.  

- When you can't remember what a plate is and crazily yell at your husband "you know that thing you put food on and then you eat off of it" while he stands there wondering if you're taking yet another crazy a** prescription from another dismissive doctor or whether you're really a crazy witch he should divorce.  

[selmaS]

  lol....all so true and I have BTDT to all u shared with us....


   Thanks : )

[MamboMom]

...when you want to give your baby neice a cracker and tell your 6 yr old son to stop jumping, but you put the cracker in your 6 yr olds mouth while looking at your neice and sternly say "stop jumping"...

...when you try to tell your husband "okay let's go to bed", and it comes out "zzhhvveshhaa" with a straight face...

...when you would rather give birth every day for a week straight, than have another chiari headache...

[jiggle93]

...when you turn up the TV so you can hear something besides the ringing in your ears
...when your neck and shoulders hurt so bad that your family is afraid to touch you in fear they will make it worse
...when you drive somewhere and cant remember doing it
...when you have a great time with family trying to laugh, almost passing out from the pain, and then wake up with what seems like a hang over from the HA the fun caused...(worried about the upcoming holidays with this one and the visiting family)
...when your teenage kids can successfuly run the household while you laying in your bed all day
...when the first thing everyone says to you is Hi, How are you feeling?
...when your DDs boyfriend begins researching CM in hope to find someone that can help
...when you have your own language, which mostly sounds like jibberish- and your family can translate it
...when you ground one of your kids for doing something wrong, only when your husband asks, you cant remember what you took away, for how long, what they did wrong in the first place,  or even which kid it was
...when you tell everyone in the house where you are putting something because history proves that if you dont - you'll never find it again!  You just remember that its in a safe place!

[momof3gr8kids]

Hi, I noticed you live AZ too.  Can you please refer me to your Chiari dr?  I have been on a quest to find some help for a year now and have not had luck.  Thank you.:)

[lyjody]

When I was frantically looking for my reading glasses... when my students sd. you have 2 pair on your head and one in your hands.... LOL .... I bought extra cause I can never find a pair!   LOL

[Rylanesmom]

You know you have chiari when you can't lay on your stomach and prop your head on your a arms to read (or lay in the sun) because it feels like a ceiling fan us going off inside your head.

When you are constipated it feels like your head will explode instead.

This is th only place you can really tell how you feel and Selma became your new BFF.

Everyone around you at work thinks your okay because they can't see the ailment and you just don't know how you are going to do another hour.

It's a "game" what part of my body is numb this morning

Oh .... And I can't stop crying because I have chiari

And no the stupid pills don't work

[roktta06]

OMG! I am laughing so hard!!! My heads starting to hurt but I  don”t mind  at all  !!!!

Murryj you made me remember…. I put on some pain cream, hoping to get lucky… but forgot to wash my hands… for once my DH found out what NUMB means!!!!! lol lol lol !!!

[drewlevas]

Poor hubby LMAO

[roktta06]

Sorry if I am intruding but I know of a wonderful DR in Arizona…Phoenix… Two in fact:
Dr.  Joseph M. Zambramsky
Barrows Neurological Institue

Dr. Nicholas Theodore www.bnaneuro.net

Second one (Theodore)  a darling loving caring Dr. GOOD LUCK!!!!

[roktta06]

You know you have Chiari ….when you are at a wedding and go to the bathroom (wearing heels)  and somebody remarks...” are you SURE you haven’t  not had too much to drink?” lol

…when your  kids ask you “Mom can we go to the mall…if you don”t have a headache?”

…when your husband does not invite you to go to a family fishing trip and you ask why?  “...surely you”ll get a headache or SOMETHING”… he responds!

[roktta06]

You know you have Chiari when…. you are with your close friends having a great time and have to leave because you’ve  laughed too much! :( bummer!!!

[selmaS]

  Hi, thanks for sharing ur Drs name, but can u please add it to  our drs list thread?

  http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

[roktta06]

I’ve  already done that…. ! thanks

[Rylanesmom]

You deactivated your Facebook account because now you hang out in med help

[Rylanesmom]

You feel a sneeze coming and know you
are going to pee your pants

[jiggle93]

Thank you roktta06 for the Dr. rec. I havent been seen by any Dr yet, have found a few names,,,but couldnt remember where I left them.
Sorry for the delay momof3gr8kids...I think I'm liking the comments left by roktta06 on thses two. I will be following up with these names in Jan. when the new insurance starts. I'll try to remember to post my liking/disliking. Keep me posted on what you find.
jiggle93

[Rylanesmom]

You get out of your car and can't believe how poorly you parked the car

[aimsela]

How about this one. You go to the store and buy this really cute outfit then wear it to work the next day and everyone is asking you why you are wearing pajamas.

[thrice3]

.....you hate stand up comedy because laughing for an hour straight makes you feel like you're dying!

[Rylanesmom]

You take notes to ask your dr on your iPad because you know you won't remember

[littleone3611]

You know you have Chiari when.... you know what you want to say but just can't get the words to come out right.

[drewlevas]

When the cops arrest you in youre appartment parking lot because you went forward insted of going backward and they say that they have been watching you for the last 5 minutes first go to your car will walking wobly and then fumbled with your keys and then you almost hitting the lamp post.

I told them I wanst drunk! But they didnt belived me! Well they had to let my go! My test was clean and I had to explained to them that I always walk like that! They told me to take a taxi if I was this tired! Oh my! My HD wont be impress when I'm going to tell him that.

[selmaS]

  OMG did this just happen?...oh my goodness that is scary!

[drewlevas]

My mum had call me to go fix something at her place. Since it's dark I decided to take the car. I ended up telling her to wait tomorow to get it fix.

[selmaS]

  But did the  cops try to arrest u tonight?...oh my....good thing it can wait...but u should reconsider driving....especially when u feel like that.....stay safe.

[Sargmomof3]

I laughed, I cried, I sobbed then laughed again.  I've finally found a place where people understand!!

You know you have chiari when....your husband tells everyone you are allergic to fun because laughing kills your head-not for just a day but for a couple of days.

[drewlevas]

Everything is all right selma. One of the cop came back to talk to me. He sais that they are not going to do nothing about this incident. He as a sister that as MS and he sais that after he googled Chiari, it made him think about her and her stugles. So he just told me that next time I feel like tonight to take a taxi insted of the car to stay on the safe side.

[selmaS]

  I am so glad and I agree...take a cab...much safer : )

[drewlevas]

You know you have Chiari when: You get in the shower all happy that you have a good morning and you realize that you are still wearing you glasses and socks once you stated to wash you're hair!

LOL

No wonder that I could read the labels on shampoo bottles (I'm blind as bat without my glasses) and that the bathtub wasn't cold.

LOL

[selmaS]

  OMG...too funny thanks for sharing .....

I have the same problem reading shampoo bottles, and couldn't understand y the shampoo was not coming up to a lather, and y my hair sis not look clean afterward...both bottles were conditioner....so I was "washing" my hair with conditioner for a month...had no idea.. and it took until the end of the month  for me to even notice.....great

[irislita]

...when ur body feels like on a bad neverending trip...

[amelia133]

You know u have chiari when you spell it so much on your iPhone it no longer comes up with a suggested spelling "chair" instead it just accepts it as correct.

You know u have chiari when u are the only 20yr old in your town that does not drink because of medication, has no idea which is the best club because let's face it even on a "good" day that ain't happening and defiantly would prefer a cup of tea and a hot bath then a night on the town!

[selmaS]

  Love the posts...keep them coming.....

[mizzariel314]

U know you have chiari when the life u have is gone

U know u have chiari when u sitting in your car and you shaking and every body think u shaking your head from the music .... if u get tremors u know what I mean... when u don't even have your radio on lol

[JennGwithChiari]

...you don't make plans because you don't know if that will be a good day or not.

...you cringe when people say, "keeyaree-whuh?"

...you drop your pen on the floor and you spend a full 5 minutes contemplating whether you should risk bending over to pick it up or should just go try to find another one..

...you have found creative ways for flicking your foot under your clothing to launch it up in the air to pick it up off the floor, instead of bending over...

...you need something on a high shelf but know if you look up you will fall over, so you go find a stockboy.

...you have to remind people to not tell you jokes because you don't want to laugh.

...you relish that nanosecond of pain-free time in the morning between when you know you are awake to when you open your eyes and have to move.

...you debate taking the elevator or the stairs. Which will jar you the LEAST?

...you have to explain to your boss that it isn't just a headache, that your brain is just too damn big for your skull so its looking to escape down your spinal cord.

...everything hurts all the time, nothing tastes good, everything smells bad, every little sound gets on your nerves and you can't take anything that makes the pain or this weird dizzy/nausea/crushing throat/winter coat feeling go away...

:(

[itsy1]

When your 11 year old, a lover of loud screamy music, mischeviously looks at you and says, "Is it a good hearing day or a bad one?"  ~laughing~

...when you can't find the word for "elf" and end up playing charades with your 8year old

....when the "uh" gets "um" so we can have "oh you know, what was that?"

[amelia133]

Haha love that picking up with feet one! ... I do it with everything not just clothes .. My feet have mastered the art of being my hands!

[roktta06]

…when you are at the movies (DARK) with your little nephew ..he asks for a drink of soda you stick the straw up his nose……lol!  

[Snappykitty]

you know you have chiari when you are happy that you have an MRI showing your brain...falling out of your head...after years of being told...'it is in your head'.

or...when your son calls you dory from 'finding nemo' and...you think it's funny.

this group made me smile and i am sorry that there is so much pain driving what is obviously...so many wonderful spirits.

thank you for sharing.  :)

[zygy2]

..... when you have that hidden list of the things you really want to tell your doctor about but can't because if you feel like if one more person thinks you are crazy you will just lose it!!!

[Rahe28]

when your husband and kids normal response to a banging noise in the shower is " is it you or the shampoo bottles again ?" lol

When the kitchen sink becomes a salon hair washing  station!!!

When you run into your kitchen wall so much it actually starts to move out of the way (starts to bend)

[drewlevas]

I can relate to you shower one, my DH fear so much that I fall in mine again that he won't let me lock my door when taking a shower. And if he hears a bang he get in to ask! LOL

[DANI0103]

You know you have chairi when its cold out and your in pain not because your freezing ur toes off but because of what they call the "cape effect"...anyone else get that?
-Dani

[selmaS]

  Hi....yes, pain and stiffness in the neck and shoulders, or what is known as the cape effect. This could be an indication that u have a syrinx as well.....

Even MS patients have what they call "cape affect" pain, so u do need to look at all possibilities as to what is behind it.

    "selma"

[DANI0103]

thanks selma you are so helpful, i know i have a syrinx, I have also been tested for MS but turned out negative. Just feels good to hear....I' m not the only one

[selmaS]

  I believe all of us get tested for MS to rule it out...as the symptoms r similar they have to rule it out. A few members have been dx'd with both.

[SilentSong101]

Oh man, I laughed at this one - when you cant find the keys when they are in your hand, or your sunglasses  when they are on your head,or your wearing them...

I do that all the time hahaha! When you are in the middle of a conversation with someone, and start to say something but stop all of a sudden because the thought fell out of your head. So you say "uh sorry, I forgot. I have a broken brain."

And they think you are joking!

[Viksta]

This is just hysterical I am laughing so hard but trying not to! Lol

Ok so .... When you pick things up and drop them constantly
               When you walk like a drunk
               When a pill that would normally knock you out only JUST takes        
               the edge of your headache
               When you are sitting on the front porch in boiling  weather and    
               You need a blanket cos you're cold
                When you forget and get up too fast and the whole room spins        
                And turns black
                

[casey788]

....when you have to tell your doctor to research it, because you know he is treating the wrong thing, and he refuses to believe it. lol

[casey788]

..and when your ambidextrous..and had to sit and try to remember which hand you write with.
...and when your doctor doesnt know what else to do about your headaches, so he tells you to quit brushing your hair so hard

[Viksta]

Lmao don't brush so hard! Really? Lol

[SilentSong101]

LOL oh man that is hilarious...I sometimes can't remember what hand I write with either hahaha!

When someone on a medical show gets a drill through the skull to relieve pressure on the brain and everyone around you talks about how painful and gross that would be you cant help but smile and think "that sounds really nice..."

[drewlevas]

LOL Yes it's true the hole thought the top of the head sometime seems nice LOL. Did you know that they have been doing this for thousand of years for the extrem brain presure!

[SilentSong101]

Yes, I know! Haha...people always look at me like I'm crazy when I say it sounds nice! LOL

[Rylanesmom]

Youbread the thread when it pops to the top and think it's new until you get to several things you wrote lol

[wvgal1978]

When your vision is so blurry that you think you forgot to put you glasses on but when you go looking for them...they are already on!!!

When you call you pcp because of a headache that is horrible and nothing is relieving it and they tell you to go to the ER then when you get to the ER they say why didn't you go to your pcp you know we can't treat chronic pain....eeeerrrrr!!!

You keep a list of medications on your iPhone because there is no way you can remember what you take or the dosage and because it changes so often if you make a printed list you'd use a reem of paper within a few months!!!

[randroid]

- You take allergy medication each morning just in case, because you're so scared of sneezing
- You visit the doctor after booking months ahead for your pain and suffering, he asks what's wrong, and you can't think of anything
- You're scared of the dark because you might get lost in your 1-bedroom apartment

[SilentSong101]

- You visit the doctor after booking months ahead for your pain and suffering, he asks what's wrong, and you can't think of anything  <--- I DO THAT ALL THE TIME!

When you came in here to write one down and you can't remember it. Dang.

[Stephiec79]

oh my gosh! I have missed this group so much!!! I haven't been on since my PFD in June! I really needed to read this thread especially today! I'm literally LOL!!!

You know you have Chiari when you walk into the wine glass rack in the kitchen, even though the wine glasses have sat unused for a VERY long time!

[drewlevas]

You know yoy have Chiari when :

People that are dinning with you takes bet on what you are trying to say when you cant find your words and you are making all kind of noises and pointing to try to get it out!

[Robinetty]

LOL!!!!!!!!!!  Or if you are a carpenter and thinking about drilling yourself!

[Rylanesmom]

You're sick and you get your medical binder to figure out which Dr you will call and you have a choice of several specialsts or pcp

[mac21105]

When you can take out your notebook of symptoms, knowing without writing it down you WILL forget.

When you have tremors so badly that you can't even cut a cake.

When you start looking for the lunchmeat, which you placed in the kids candy drawer...

[MamboMom]

Hello everyone, this is MamboMom's fiance.  She approved these lol....You know you have chiari when she yells at me for misplacing the keys but find out they are in her pocket, and the next night are yelled at again because she thinks I lost the keys that are really just in her hand....lol I still love her :-)

[selmaS]

Well I hope u get a sign on and post again...thanks for sharing...lol...I think we all tend to do that... : P

  And we all need the support and understanding u obviously share with each other : )

[MamboMom]

I told him :-) And I'm gonna show him more of the forums this evening, so he might join too.  Oh but he does want me to add that I drove us home just now (rare occurrence) and forgot to let him out of the car before I pulled into the carport AFTER backing out to get straight again....he had no way of getting out and just started laughing till I realized what happened...

[ijklmom900]

You know you have chiari when you hold the back of your neck when you feel a sneeze coming on....because if you don't it feels like your brain is coming out it hurts so bad.

[10tonigirl]

You know you have Chiari when every time you get up off the bed, chair or couch....your husband says "oh honey, please be careful!".

[Shannon12012]

You know you have Chiari.... When your 12yrld son lol @ you and says "Mom you know you just tripped over NOTHING and you are barefoot?!?!" Then my DH says "shhhhh she'll yell at you" as he to lol under his breath

[Viva001]

The worst symptom is not knowing which symptom will be dominant each day, so that you call it Wheel of Misfortune.

[nsalem656]

You know you have chiari when the eldest dog who has hip problems walk faster than you can manage.

You know you have chiari when your gi doctor puts you on all the antiacids that don't work than have you checked to see if you qualify for the gerd surgery and when denied the doctors start putting you on the same antiacids that don't work again.

You know you have chiari when you ask more questions than anyone else in your class.

You know you have chiari when you put your head on your left hand for the millionth time and your hand slips for the first time.

You know you have chiari when the doctor says you passed the strength test but you have massive strength loss in one hand that was explained away by a different disorder so the other hand shouldn't have been equal in strenght.

You know you have chiari when you stop trusting your doctors because they still believe you have blank even though your tests prove differently.

You know you have chiari when you want to post your doctor in a bad way on a website for everyone to see. (sorry I don't like facebook.)

You know you have chiari when you watch mystery diagnosis looking so that you can find the cause of your symptoms.

You know you have chiari when you hope that the next fall won't break either leg because you don't have enough strenght to use crutches or manual wheelchairs.

You know you have chiari when you ask your friends to stand in front of you while walking down stairs and in back when walking up.

You know you have chiari when you had 10 hours sleep and you feel like you only took a half hour nap.

You know you have chiari when all you want to do is go home and sleep.

You know you have chiari when your roommates can't hear their tvs because you say it's loud.

[sherimom]

Lol - that's the truth!! I have to explain all the time that your brain has them !

[JessiLinn]

LMBO!!! This one has to be the best I've read!! So mean and sad, but oh so true

[JessiLinn]

Casey, have you found a NS to treat you?

[JessiLinn]

You know you have Chiari when....

... you have an alarm set to go off 5 times a day to remind you take your meds. and an alram to go off 3 times a day to remind you to feed your son and eat yourself.

... when everyone in the house hollers your name when they hear a loud noise because you've passed out so many times, they are afraid the noise was you hitting the floor again.

... when the first thing anyone says to you is " how are you feeling today?"

[nsalem656]

I think it is you know you have chiari when people ask you how are you and you feel like telling the truth as an answer

[JessiLinn]

That's the truth. But they won't understand, so you smile and lie, most of the time.

[carivan]

Have you found relief for those new symptoms?  I'm 19 years out and starting to get symptoms back, too.

[carivan]

You know you have Chiari when ...

You start to sound like Vizzini from Princess Bride:  "You, get that --thing!  And you!  Get that other -- thing!"  I wonder if Vizzini had Chiari, too?

[littleone3611]

When you keep on yelling at your son to get ready for bed only to find out that you were calling the dog.   Or getting lost in your own home town for hours.

[eemomof3]

You know you have Chiari when...

...You can't even pass gas without your head feeling like its gonna explode.

...You regularly ask people (that know you well) to please just drill a hole in your head so the pain will go away.

...You forget how to spell words you have known your whole life.

BTW...thanks for the laughs! It feels so good to be reminded that other people know what I am going through

[Viva001]

When it hurts to blink.

[nsalem656]

When you want to hit (and don't) the next person who says (or insinuates) its psychological.

[drewlevas]

When you have the feeling your ears are under water.

[carivan]

When you bend backward AT THE KNEES to get that last drip of coffee from the travel mug -- so the whole neck/spine thing won't hyperextend.

[nsalem656]

When you feel like your fifty years older than you are.

[Dextersmommy123]

When you explain to people that your brain is falling out...they laugh  you laugh but secretly inside you are in agony.
You have a 10 month old baby and almost pass out from laughing at how cute he is all the time
You have a plan to explain to your 10 month old son when he is older that mommy's brain is falling out
When hired at a new job people think you are out of  your damn mind for stumbling your words and forget what you are about to say or do every couple minutes!
Your neck and shoulder blades throb all day long and sometimes rubbing them or popping your neck the right way can help1

[nsalem656]

when you cannot pick up 4.4 pounds with both hands.

[drewlevas]

When you go to the amusment park with your kids, and you get sick at looking at them on the rides with your own two feet on the ground!

[Viva001]

When you watch a movie w/some kind of neck straining, or see a photo of women carrying water on their heads, and you wince in pain.

[selmaS]

  LOL..Viv.,...I know that feeling all to well ....

  and Drew, I could never watch my DD on the Merry -Go -round....so sad...I would stand and wave and she would say did u see me, and I said yes, but I could not watch...not just the getting sick, but I would get wobbly like I was going to fall over...lol...same with swings, so sad  : (

[sweetjen680]

When you don't have anything to add because everyone else already said your stuff!

Here are mine...that I don't know we're mentioned

* you can't get things off a high shelf because looking up makes you dizzy and you can't pick thing up off the floor because looking down makes your head feel pressure

You look everything up because you are afraid your tonsils are trying to beak out of their "room" again

* your back hurts, so you think your syrinx is returning
.... #postsurgeryparanoia#

[auntij2746]

I was reclining in a lawn chair early in am in back yard and the many clouds floating by all reminded me of my brain MRI images...

[selmaS]

  Well I will have to try looking at the clouds to see those images...lol...sounds like u had a nice relaxing day : )

Only next time try to think of bunnies, and puppies,,...lol...

[RheaAnn]

After giving your medical history to any new nurse/doctor, the first comment is, "well.... you certainly are interesting!"

[Viva001]

When you read this list, it's like brand new all over again.

[sweetjen680]

Ditto!

[Viva001]

After you read others' symptoms you add it to your own list, because you realize "oh, I have (or had) that too!".

[Kwstar1]

I can relate to lots of these, love this one: You know you have chiari when you watch mystery diagnosis looking so that you can find the cause of your symptoms.

[klt_2008]

You know you have a Chiari when...
That ONE day a week (Maybe) that you wake up WITHOUT a headache and you spend ALL DAY wondering WHEN IT'S GOING TO START!

[Viva001]

You're actually ecstatic (momentarily) to get the chiari Dx, because you FINALLY know what's wrong with you!

[sweetjen680]

Absolutely!  When the prospect of having brain surgery is a relief compared to what you have been going through .....

[Viva001]

When you are both nauseous and hungry at the same time.
Also, both hot and cold at the same time.

Hah, try that, healthy people!

[LisaRiu]

You know you have chiari when......you try to be a dutiful wife to your husband and run him a bath.....only for him to have to empty it and start again because it's too cold!   Well....... I thought it was a nice temp......

[ChiariWolf]

:-) Opposite problem. Often I can not reach my back due to neck pain radiating into arms. So my dear wife will come in to scrub my back only to burn her hands. Way too often I can't feel the heat and end up with the water way too hot. She won't let me run her bath water!

[ajckie]

I've been known to find the remote in the freezer ...

[ajckie]

YES!

[LisaRiu]

You know you have chiari when......you have to roll out of bed in the morning.
ps chiariwolf....I also have the same problem with hot water too! Especially when washing the dishes.

[Kwstar1]

lol i do this at every dr appointment and my parents are like arrrgggg!

[Viva001]

When you bite your tongue because someone continues to whine about their broken toe (or big bruise or bad haircut, etc).

[sandy629]

  you know when you have chiari  when all the above aplies to you

[sckofchiari]

You know you have chiari when: You just want to have a normal day, to laugh, play and not hurt.  Thank all of you for your post.  I had post fossa decompression surgery in Nov. for my Chiari, I wish I could say that it made a difference, but it hasn't it was NOT worth having to go through the surgery it was horrible!!!

[MeganShel]

You know you have Chiari...-
-when you sneeze and have extreme pain.
-when you are 16 and all your friends are driving and you can't get your license because you have black outs.
-when you cannot stay awake at work or school because you slept about 2 hours last night.
-when someone complains about a "headache" and you can't even say anything back.
-when your friends know to walk around you just in case your trip or fall.
-when you hands go instantly numb and you drop everything.
-when having a cold means having horrible pain every time you cough.
-when the MRI techs know you by name.
-when you have more hospital bracelets then jewelry.
-when you have more doctors then family members.
-when no one understands the pain you go through everyday...

[nsalem656]

When you have a 39.8 temp and the doctor says "you look like you have no fever."

This one I came up with at the hospital. When You don't know what healthy feels like.

[ceo83]

U know u have chiari, when you start to form.a search party for your dog, and calling out her name @1 am. To find out 20 minutes later, she was in the house, never took out to begin with!!!!! Called my sister in tears to help me find her....

[drewlevas]

When you re-read this a laugh so hard that you have to hold your neck.

Way!!! I'm back on line, got internet back :)

[selmaS]

  Welcome Back !!! Missed u <3


   LMAO....I know...ouch....lol...

[Viva001]

when you wish you had a broken leg so that you could get some rest (& maybe a little sympathy)

[selmaS]

  aka- meaning that it is visible what is wrong to others.,....lol...I am with u on that one Viv.....

[Rylanesmom]

Your stinking neurologist tells you your issues are not neurological and you start crying and she says why are you crying and you say no reason thinking I have chiari....I cry because I have chiari and you don't listen to me so the answer is no reason ugh!

[nsalem656]

When you're tired of hearing that you are not so bad off because your not a quadrapelgic.

[Julz68]

new to Chiari, these comments are overwhelmingly familiar....

[Viva001]

you're considering moving closer to NS in retirement, because he is 1 in 1,000,000.
his hospital is better too.