Chiari Malformation Community
You know u have chiari when~~~~~~~
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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620923_tn?1405964489

  I actually think we need to take over a ghost town and bring along our own Drs...that way we r all together...lol...

  what do u think?....lol...
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3177763_tn?1344540646
....can't watch video's of your son's games or of him fishing...or anything really because the vertigo makes you sick!
....can't read a book or anything else up close because your eyes mixes it up in your head somehow and it makes you nauseous.
....the floors in stores! Really!?! Just once I would like to go in a store and not get dizzy, nauseous, and not only feel but look like I'm drunk because of their floors! I have enough trouble with it on my on thank-you very much!
....when you have to sleep with a night light now because you wake from a dead sleep (which you don't get much of anymore!) because all of a sudden your head is spinning off of your shoulders and your brain is spinning inside of your head at 1,000 miles an hour and you need something to be able to focus on every time it happens! (20+ times per night)
....you drop everything because because your arms and hands go numb, including the chicken noodle soup you've made for your sick baby!
....they tell you it's not the Chiari making your hands and arms go numb...has to be bilateral carpal tunnel that affects the radial and ulna nerves in both arms because they just happened to do the testing when both of your hands are dead to the world!
....Dr. tells you he's afraid to refer you to another dr. because even though he knows you have all of these symptoms the one he sends you to will think your a hypochondriac if either one of us tells him what all of my symptoms are! Seriously!?! LOL! how do they expect you to explain your symptoms then? LMBO!
....your heart races and feels like it is going to pound out of your chest (jump out) at the same time. The feeling goes away but talk about disconcerting! Ok...downright scary! LOL!
...Serious case of CRS!!!! (Can't Remember Stuff!) Lol!
....what was I doing....oh, yeah! Lol!
....when you can't walk outside without your family holding their breath or fussing at you about about going outside when nobody's home because you keep getting in fights with the ramp and the ramp wins! Lol!
....you have no choice but to walk with crutches...but when your hands go numb.... you know what comes next! :)
....the kids at your son's school all know that they have to look out for you to make sure that you don't fall, not just because of the crutches! They all know and come running to my truck to fight over who gets to help me carry stuff inside and if they don't carry it in they want to be first in line to help me carry stuff back out!!
.....can't sleep..no matter how tired you are, the HA, the pain in the neck, back and everywhere else!
....you need a translator half the time! Sometimes my son has to translate for my DH or family or friends, sometimes it's my DH trying to translate! Lol! My dyslexia makes it hard enough, mix Chiari in there and boy howdy you've got a mess!
....your DH has to take over many of the things you've always done....grocery shopping, laundry, supper, etc....
....you walk into your son's room to check on him, walk outside and call for him, not worried yet...drive next door to mom and dad's (they live right next door but I can't walk that far most days, call again...ask mom and dad if they've seen him...nope....ok, panic starting to set in! All the horses are in the pasture I am yelling out of my truck window despite the pain in my head, no answer...this is NOT like my baby!! I come back in the house to see if he's taken his cell with him and call his name as I come through the door, tears in my eyes because I'm upset! Out walks my little man..."Hey mom, are you ok?" I ask him..."where were you? I came in your room earlier and you weren't there so I went looking for you..." Mom," he interrupts me.."what baby?" I'm a little forceful with the baby portion of my question because I'm still a little upset with him..."You came in my room and looked right at me and turned around and walked out, I thought you knew I was in there. Next time I'll just say I love you so you register that I'm there, I love you". I felt so small! Here I had lost my son and he'd been right in front of me to start with my brain just didn't register him sitting quietly on his bed....It's happened with the animals, sunglasses, keys...you name it! But really, my son! I now call his name before entering his room I will NEVER NOT see my baby again! Chiari makes me lose enough, I will not "lose" him too!
....your eyes...your seeing stars and they aren't from Hollywood! :)
....when people constantly say.."are you sure you don't have MS? Maybe you just need to see a different doctor." Yes, I need to see a different doctor..a Chiari specialist...No! I don't have MS!
....your ears hurt they ring all the time!
.... sound is amplified thousands of times and it's like fingernails on a chalkboard...at the same time every nerve in your body is on hyper alert and even the slightest touch is like an electrical current passing through your body and you almost want to cry at the thought of someone touching you, you have to go and take breaks from your family so you don't hurt their feelings because you can't tolerate the sound or the touch's. (no matter how bad you may want them!)
....when someone starts complaining about their HA's and the symptoms they have you ask when's the last MRI and the first thing that comes to mind is could they have Chiari too?
....you have a hypersensitive gag reflex! Hold a pen with your teeth? Whatever! Teeth cleanings are not pretty!
....you forget how to swallow your food when eating...or it gets stuck right after you've swallowed it!
....I resemble all the remarks on this page but had to make a few of my own Lol! Probably repeated most of those on here...had to keep coming back to it as I kept forgetting what I wanted to write! :) Sound familiar? Lol! I'm hanging in there like hair in a biscuit as I know all of you are! :) With Chiari that's the name of the game you may not be in control of everything and there may be times your just along for the ride...but you take control of the things you can and always, always...no matter how bad it may hurt, no matter how bad you may feel, smile and look for the good things in your life! :)
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3177763_tn?1344540646
I like the idea! Let's do it in a nice warm climate! I can't take the cold! Lol!! Sorry my post was so long everyone!!! :)
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620923_tn?1405964489

  warm is ideal for me as well,....lol...
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3177763_tn?1344540646
Yay! Sounds awesome! Lol!! That way we can hand pick the best, and they will not only understand but won't give us all the run-around!!! Lol!!
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620923_tn?1405964489

  Exactly and we will be surrounded by others that know just what we r going thru......
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3177763_tn?1344540646
OMG! Would that not be the most wonderful feeling in the world! To know you were surrounded by people who not only cared about you but who actually understood what you were going through! That would be so nice, as hard as our family tries to understand...without having BTDT it's hard for them to truly understand what we go through on a daily basis. God Love 'em they try! But it's not the same as someone that goes through the same thing you do everyday! :)
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620923_tn?1405964489

  My utopia....lol....if only it were possible huh?....sigh
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3177763_tn?1344540646
....the sun coming through the trees as YOU drive not only makes you nauseous and dizzy but gives you a HA! It's even worse when your the passenger! But you need the tree lined streets because the sun coming straight into the windshield all the time is straight up HA!
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620923_tn?1405964489

  LOL...oh deff.....well I no longer have depth perception and just want to close my eyes in the car,,,not so good for driving,...lol...
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you know you have Chiari when you're standing in a parking lot, and think that you are just imagining a car backing into you because you're dizzy, when it REALLY is backing into you!

I was talking w/a friend, & this evil old man decided that the way to get us to move was to back into us.  He didnt even beep.  His intent was not innocent, as he was smirking as he drove away.  I could not believe it!!
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(btw, that is aggravated battery with a deadly weapon; I looked it up.  & there doesnt have to be an injury)
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620923_tn?1405964489

  Did u get the license plate #?...goodness that is evil....he could have honked....sigh...people in a hurry to go nowhere,...sad
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you know you have Chiari when the highlight of your day is when the mail comes.  Then you can get into pjs & are pretty much "done" with the day.  Mostly.
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620923_tn?1405964489

  LOL...oh yeah....I do not even bother with the mail....haha.....my highlight,..hmmmm I guess talking to all of u : )
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When u stare at the t v for 15 min b4 u even realize that it's not on!!!

When u wonder why someone keeps taking your water out the frig n your the only one there!!!

I have plenty more!!!
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1903798_tn?1333908888
You get an insurance packet update for the new fiscal year and you see that mri and ct scan go from being covered 100% to 80% and you start crying:(  Then you get busy making Dr's appointments before the year end!
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just getting your teeth cleaned seems like a major ordeal
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You know you have Chiari when brain surgery seems like a PHENOMENAL IDEA!!!!
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4487186_tn?1362148262
you know you have chiari when..... you get out of the shower with a black eye
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620923_tn?1405964489

  Oh no...what happened.....my shower issue is  u know u have chiari when u get out of the shower and find ur hair is no cleaner then it was b4 u shampooed only to find u used conditioner to wash ur hair......
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4487186_tn?1362148262
lol ive done that too! and i just slipped, again lol, im fine really. nothing major this time
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620923_tn?1405964489

  U will need some adhesive ducks or something so u do not slip....

I hate that I can not see to read the bottle to know which is which...ugh....and so many look the same....lol...oh well....

  Glad u r ok....
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You know you have Chiari when-Just about everything listed you have experienced. And now you know the you are not CRAZY!!!!!!!!!!
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4703993_tn?1379771988
You know you have Chiari when.... you miss 90 days of work in 1 year
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4487186_tn?1362148262
you know you have chiari when

-someone says they have a headache and you think "i wish i had JUST a headache"
-when you have to recount 5 different times doing a math problem because you keep forgetting where you left off
-when you cant seem to remember a certain word and are trying so hard to remember it that you forget what you were talking about in the first place
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4487186_tn?1362148262
oh! thought of another one!

you know you have chiari when
-you want to slap the next person who says, "its not like it can kill you. it could be worse." uh that gets so overwhelmingly annoying
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4689100_tn?1358801534
when you want to go ape on someone who complains about a HA... Really people? you have no freaking clue!

When people say: "You look ok, what's wrong with you?"

When you just cry for no apparent reason to others, but it's because you are so miserably trapped in your own body and nothing makes it better.

When all you want is some form of normalcy on a daily basis, and the simple task of cleaning your own house brings on terrible pain but you do things anyway because you don't want to be considered weak in the eyes of others.

Oh and 1 of my favorites: When you have to have a BM and your afraid to push too hard cause it creates horrible head pain and then BOOM you've got another migraine!

We could all go on for hours, lol

It's also funny how we, all of us, usually have a better sense of humor or somewhat morbid sense sometimes, lol, than the healthy ones!

Love all the posts today, let's do this again sometime :)

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4689100_tn?1358801534
Yeah, been there! LOL
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You know you have chiari when...

even your Therapist (whom you've seen regularly for years) starts causing you to ?? if it really IS all in your head!!

  ... come on folks, really?!  Good thing it was a day when I had the strength to put the therapist back in her place!  
      
         unbelievable

  I agree it's VERY irritating when someone complains of a HA!  -- or 'my foot hurts' or 'my back hurts' etc...   buck up little camper & "LEARN to live with it"!!!  
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4689100_tn?1358801534
I know all to well the "it's all in your head" comments. LOL
Yeah it is LITERALLY all in our heads people, now pull yours out of the other end and pay attention to what we are telling you! lol
Kris glad you were having a good enough day to put your therapist back in her place :) whoot-whoot!
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1578551_tn?1318071510
Wow! I can relate completely. I hate that you have to live this way, yet I must admit.....you just described me completely. I'm praying for you, all of us who have to live this way.
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My name is Eddie  and I feel like Im diving in the bottom of a 12 feet deep pool     the preasure on my forehead  is crazy  my sinus are not stuffy and I don't have a cold  
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

May I ask when u got ur DX and if u had surgery? Do u have ne other related conditions?
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2063048_tn?1390828211
You know you have Chiari when. . . . wait. . . what was the question again?

;)

Darn memory!
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5115844_tn?1363818857
Look up Dr. Paul Matz head of surgery in St. Paul Minnesota.  He ain't no joke.  If he cannot help you there is not help for you.  Or the head of Neuro-surgery at UAB in Birmingham Alabama.  Baby!  They are goooooood!!!!!  I had the worse kind, even had to have two spinal bones removed along with a large chunk of my skull and I am FINE!  No more pain when I cough, sneeze or laugh really hard.  Had the flu and no pain what so ever.  Paralysis is gone and these doctor held out little hope for me.  
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5115844_tn?1363818857
Does anyone have the ringing in the ears all the time too because of chiari?
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

Thank u for sharing the name of a NS that is experienced with Chiari....please add the name to the list of Drs thread so all the names are in one place.

May I ask how long ago u had ur surgery?

The tinnitus can be from meds, but I have had it all along, it went away post op, and slowly returned.....
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5268525_tn?1365965096
Hello. I have just been diagnosed with Chiari's this week. After looking at these you know you have Chiari, I find myself very able to relate to many of them and laughed at many of them. Thank you for the humor.
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620923_tn?1405964489

Hi and welcome to the Chiari forum.

Glad u were able to laugh at the comments...I hope that it didn't hurt too much...lol....

I hope we r able to offer ne answers to questions u may have.
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992677_tn?1337358095
Absolutely, Tayna, I do have constant ringing in my ears. Better at times worse others. It seems when things are off kilter in my head the ringing gets louder. When I'm feeling good it gets rather faint. It never completely goes away though.

Now as for 'You know you have Chiari when...." your shoulder feels as though it's been doing way more than it should have been yet you've yet to get off the couch.

CW
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1827123_tn?1383868876
I have it also Tanya, I am currently on no meds and have not had surgery yet. I have had it as long as I can remember, but thought everyones ears did that...much like my other symptoms!  
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I recently got diagnosed with Chiari and Syringomelia. I want to thank you all for this forum, I have read alot of the posts in the last few weeks. Honestly, I can not digest too much at once because it is overwhelming. But, I have found out thur your posts and the " you know you have chiari" thread, that all these years I knew something was wrong. From the throbbing in my head like Fred Flintstone, to the random muscle cramps to the numbness in my back that they said "shouldn't be there",NOW I know I am not crazy! lol. Thanks and I will continue to read and absorb info from you fine people!
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

I am so happy to hear u were able to get info from reading and I am even happier that u decided to join us by posting.

Please feel free to start a new thread and ask questions....one at a time, how ever is best for u....just know u r not alone <3
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Loved that!!!!
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Let me tell you...I started having scary symptoms this time last year (thought I was having a stroke or a heart attack), and I called an ambulance and was taken to the ER....where they treated me like scum because they thought I must be drunk. Every test they did turned out normal, and I was discharged. The doctor thought maybe I had MS or an enlarged heart (based on palpating it), and I had to have all kinds of tests done. MRI showed Chiari Malformation....I shouldn't complain because at least mine isn't bad enough to require surgery, but truth is, I am miserable, and I feel like no one gets it...until I read these posts! They hit the nail right on the head, but everyone else thinks I'm flitty, paranoid, emo (which I have been since a couple of years before the "big" symptoms started), weird, hypochondriac, just "stressed," and I get so fed up! I love this page because y'all actually get it. Question: does anyone choke, feel faint/fluttery, see colored spots, and basically get the sensation that they're deprived of oxygen and dying when they wake up from deep sleep?
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I know what you mean! I have all kinds of whole-body symptoms that have increasingly gotten worse over the past couple of years, until I got an MRI done. The first one apparently did not show Chiari because no one said anything about it, but this past January (2-3 years later), I got such scary symptoms that I knew I had to find an answer, and he said I did have Chiari, but he blew me off and said it wasn't causing my symptoms. However, I researched the disorder, and the symptoms it lists are EXACTLY what I'm having!
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When your eyes fell like someone is trying to make Wine, using them.  Squeeshy, Squeeshy
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620923_tn?1405964489

  Hi and welcome to the Chiari forum.

U may want to start a new thread with ur questions and concerns as it may get lost in this thread.....

Many of us have been accused of either not being truthful about our symptoms such as overstating them or being drug seekers....it is difficult as not many Drs r well informed or experienced with Chiari.

And yes to ur questions about choking...as for the sleep issue, if u r gasping for air, that may be sleep apnea and it is considered a related issue  and u should be tested for it.

Just know u r not alone.
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979826_tn?1389039958
you feel like crap way more thank you dont ;(
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620923_tn?1405964489

  So sorry Molly....I am sending prayers ur way.
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WOW.. I can't believe it. I have found someone who completely understand what this stupid thing can do. Thanks for writing this. I am SO glad I saw this!
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7201263_tn?1391589594
omg thats me
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I have no idea if you will get this but I just read your, "you know you have Chiari if ...." post and I could relate to so much. I have POTS(dysautonomia) and but I have some odd neurological problems as we'll.  I  have been trying to explain the experience that sensation of waking suddenly from sleep with severe vertigo. You explained it so well! I was just hoping you knew more about the reason.
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620923_tn?1405964489

  Hi and welcome to the Chiari forum,

The poster u r replying to is not an active member but has popped on a few times recently so to inform her u r trying to make contact, send a PM (private message) that will generate an e-mail so she will know someone would like to communicate.

Since u have POTS, do u know if u also have EDS or Chiari?
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