What is the dumbest thing you have been told about Chiari? We all need a good laugh now and then:)

General
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I visited the Chiari Connection International website and read the page titled “The Lighter side of things.” They had a list of the top 10 dumb things said to Chiarians. We have all been told some pretty dumb things, whether it be from friends, family, or doctors. So…I’m bringing this discussion here so we can all get a good laugh about some of the dumb things we have been told.

For example…My sister told me that if I wouldn’t frown, my head wouldn’t hurt. If only it were that easy. I’m frowning BECAUSE my head hurts.

At the time, these comments can be hurtful and frustrating. But, sometimes you just have to look back at their ignorance and laugh. Please share some of your stories.

Crystal

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A NL once told me I was only having headaches because I was exercising. His solution was to stop exercising. Um, huh? LOL.

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family member- your head wouldnt hurt so much if you learned to express yourself? HUH?

someone i know- its not so bad if you don't think about it. (wonder how i can change pain, and dizziness and lack of concentration from being a thought Hmmm)

Primary doc- gee i dont know anything about the brain just that we have one but, dont worry i can treat you, for other things- Umm yeah i dunno ( OK and that is suppose to make me feel comfortable that he is my primary how?)

and the all time award of DUMBEST things EVER SAID TO ME goes to

NeuroSuregon- yup you have Chiari but come back to me when you can no longer breathe, Ummm really???!!!

Please explain to me how in the hell is that going to be possible!? (needless to say i moved on)

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Before I was diagnosed I had a NL tell me & my husband that my symptoms were due to the stress of being A MOTHER. He wrote me a Rx for Thorazin. Never saw him again. Did not fill the Rx.

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Wow…People’s ignorance, especially doctors, amazes me! So…the pain/symptoms would stop if we stopped exercising, expressed ourselves, didn’t think about it, didn’t have children, and waited until we couldn’t breathe?! We have all been given some great advice…lol. Do you sense my sarcasm? LOL:) Thank you all for sharing your stories:)

Crystal

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Hey Crytstal.

Yes..I agree...we all need a good belly laugh !!!!! Does your head feel better now that you finally listened to your sister and don't frown???Ha, Ha!!!

Renee...MY LORD...Thorazine....what an ass that dude was...hope you didn't have to pay for that appt!!!!!

Lisa W......Where the heck did you find that fool??/ come back when you can no longer breathe....Sweet Jesus...I wonder if these doctors realize what the heck they are saying and how stupid it sounds..I take it that was your 1st and last visit with that fool...OMG!!!!

There were so many silly things said to me during my journey....Thank God I had taken one of my best friends with me to many NL's appt.....she is a researcher and sales at Lilly...the drug company....so she is no dummy...she went prepared ..with computer in hand and typed what these people were saying!!

Thank God I had a witness b/c I really think people would thing i was stretching the truth!!

Anyway..the 1st NL I went to ...Kris came too...I had drop foot at the time and was literally dragging my left leg.

Go in to see NL and he doesn't even shake my hand, say hi...nothing....He sees me go into the exam room...he is behind me.

"You run?" he asks..I reply..."No, I use to ride a stationary bike and exercise at the gym every day before all this..but..no, I was never a runner."

I thought he was asking me that b/c I am thin...maybe he thinks I use to run...NO..

Through broken English he says."You run now...for me....here." I say something like..."I can barely walk!"

To make matters worse this NL was not only an idiot, rude and uneducated in Chiari..He looked exactly like MOE from the 3 Stooges!!! Kris and I still laugh about him to this day.

When I told my primary about the appt he was PO'd and had me admitted to the hospital for testing.....get in my room..and here strolls in MOE...Holy crap...I am thinking..I need this loser like a hole in the head.

When he walks in..I was in the middle of another one of my crying jags...Again , no "Hey, how are ya...we'll get to the bottom of this.."

Moe asks..."Why you cry???" If I could have strangled him..I seriously think I would have gotten off on "Justifable homiside"

Another NL who was very nice and appeared to be sincere in his caring said..something like.."there is something wrong with you..but don't waste your time worrying about Chiari. I can tell by the MRI that the fluid is flowing fine" When I asked him how he could tell on a static MRI.not a CINE MRI he replied..."I just can."

Needless to say...this lady is done with NL's!!!

Peace,

Lori

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When I first developed symptons I was sent to an ENT with 30 years experience. I saw him several times with severe ear pain. It felt like ice picks stabbing inside my ears and head, on & off 24/7. He told me I needed to see a Psychiatrist. That there was nothing wrong with me. My NS wrote him a letter explaining to this Dr. how Cranial Nerves can become compressed causing severe pain. I had Bi Lateral Geniculate Neuralgia. There is also Glossopharyngeal & Trigeminial Neuralgia. It was caused by having Spina Bifida and never knowing. This lead to the CM diagnosis and almost becoming a quadripledgic. I thank God for my Nerosurgeon, Dr. Peter Jannetta. He developed all the currently used techniques in Neurosurgery & has published 100"s of articles and NIH Studies.

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Lori- Wow…That “Moe” character/NL is a joke! What a moron?! Your other NL must have some kind of super powers, if he can see the non-existant flow on a regular MRI…lol. Why do we even need CINE MRI’s when this guy can just see it on his own?! I can definitely see why you have such a low opinion of NL. I, personally, have never seen one…doesn’t sound like I’m missing much more than a good laugh down the road.



Traci- It makes me so mad when doctors pull the “crazy” card! They need to admit that they don’t know everything and you may need to see another specialist, instead of using the “you must be crazy” copout. I’m so glad that you had a NS with a “working” brain to stick up for you.



Thank you both for sharing your stories:)



Crystal

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Yes Lori I never went back to see that NS again....and have strongly Advised doctors NOT to refer patience to her either!

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Got one for you. About a year ago, I had to go to the ER for intense pain in my head and facial drooping. The ER doctor goes to exam me and asks me the gammet of questions and I tell him I have Chiari Malformation 1 (predecompression surgery). I'm scared to death of what might be happening to me. He replies to me & my husband, "you have what? what's Chiari and how do you spell it??" We lost all faith right there and then and knew I wasn't going to get the help I need. I was diagnosed with a headache!!!!! I've never felt so alone at that moment. My husband just looked at me and said, "is he kidding, he didn't just ask for us to spell it, OMG!!" We were discharged with the doctor telling us that this isn't Chiari related. I replied with, "what??? you didn't even know what the disorder was and now you googled it and you're an expert now." He was quite speechless after that.

GOD BLESS US ALL!

XO CHRISTINE

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Ok so Lori I have a question… Our Chiari expert told me none of my symptoms were Chiari related bc I only have a 4.3 mm and its not even Chiari until its 5mm and my flow is fine bc my MRI shows plenty of fluid in my brain…r u saying u can’t tell from a MRI? He also told me it will never get worse so I can keep paying for MRI if I want but my herniation will never change? So I asked him about my twitching and stuttering and he said idk what it’s from but it’s not Chiari and I only treat Chiari, u have migraines.
And this is our specialist so what now?! LoL

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Diane....

From what my NS told me....the purpose of a CINE MRI is to see the flow of CSF.....that a reg. MRI isn't ideal for that..thus the CINE MRI...

Also, yes...your herniation can get larger over time......4.3 mm can and will cause Sx's in some people...

This guy calls himself a specialist???

Let me know how you are doing..find another NS!

Peace,

Lori

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Hi all

When i first started going to the docs complaing of headaches dizzyness pains etc. He told me i was imaginen things that it was all in my head. I will never forget that and the look on he's face after he was informed i had cm/sm and was called to the pratice to be told the results because as i got up to leave i turned nd said i guess u were rite after all doc the prob really was all in my head lol :)

love caroline

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Lori, thanks for replying! Yes I saw Dr Menesez, he is our specialist here in Iowa, I kinda felt like he wasn’t up to date on the research but I’m not a ns so I didn’t argue. I knew Chiari could get worse but I didn’t know tht bout the cine MRI? He said I had plenty of fluid in my brain so he could not help me. I have looked at everyone else’s symptoms and what I don’t know I ask but I don’t understand why everyone is trying to find something else wrong with me, my symptoms fit Chiari to a t. If they can’t fix it, fine, but stop making me feel insane, you know what I mean? I’m sure u do! Well thank u again, always so much help on here, I seriously feel better as a person since I’ve joined this group!

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Razzle51- Wow…everybody has Chiari?! Huh…I had no idea…lol. So…Did he have Chiari too?! LOL:) I would have walked out at that point too!

Christine- He had to ask what it was and how to spell it, but he can still tell you it’s not causing your symptoms?! Seriously?! What a moron!!! LOL:) I loved how you shut him up with your comeback:)

Caroline- We sure do have an active imagination to be able to come up with all these crazy symptoms in our heads…lol. What a moron!!! I loved how you called him out on his BS:)

Thanks everybody for sharing your stories:) This has been an interesting and entertaining discussion.

Crystal

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I just got one from and friend and family member who I was online with after they looked at some of the pictures I have posted. Anyhow thy told me that if I was to lose about 50 pounds, I would not have all the symptoms I have and there is no such thing as Chiari Malformation. They even went as far as saying I should have a gastric bypass and that would cure everything wrong with me.

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Michael,

I feel your frustration on this one. I have been told the same thing. My Brother-in-Law is a Personal Trainer, so he thinks losing some weight will solve any problem. I started having Chiari symptoms 4 1/2 years ago, after a car accident, and I was in fairly good shape at the time. A couple years ago, before my symptoms had progressed to where they are now, I lost some weight by going on a diet and walking every day. My symptoms eventually progressed to a point where I could no longer exercise and depression lead to some not so great eating habits. Needless to say, I have gained a significant amount of weight in the last year. My point is…even when I was eating right and exercising, my symptoms/pain were still there and getting worse. Don’t get me wrong…I do think exercise and eating a healthy diet are good for our health in general. But…our situation is a lot more complicated than that.

Crystal

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If you live with chiari, you may be interested in reading my book....my memoir titled, "It's all in Your Head." It tells the story of what I went through after being diagnosed with a rare brain cyst called a Posterior Fossa Arachnoid Cyst. The lack of medical care, doctor's listening etc., created the Chiari and my book will inspire others to never give up. You can find my book on Amazon.com, Barnes and Noble, Tate Publishing.com and wherever else books are sold.

Wishing all my Chiari survivors good health and happiness.

Maria McCutchen

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Lauren- That’s kinda true…our brains are leaking into our spines. I joke about having a leaky brain all the time. Sometimes…humor helps us to deal with all that we go through.

Abby- So…our brains will eventually shrink back up into our skulls?! Interesting…lol:)

Maria- Thanks for the info on your book. I’ll have to check it out!

Crystal

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I was diagnosed 3/17. I had visited the ER the day before and was sent home with "muscle tension headache" and "go get a massage sweetie, you'll be just fine."

The ER doc the very next night told me, "wait, you've had headaches all your life, and with these accompanying symptoms, and you've NEVER had even a CT scan? Oh, we're gonna fix that!"

one hour later, I was informed that I have Chiari, which I'd never heard of before. I came home, researched my bum off, and suddenly all the pieces fit. After 31 years, all it took was one ER doc paying attention. I'm still shaking my head, when it doesn't hurt like hell to do so.