Chiari Malformation - Online Support Group

We are patients and survivors of Chiari (types I-IV), here for your support.

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

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

2 members like this

▶ Reply to This

Replies to This Discussion

Permalink Reply by Cholmee on February 8, 2012 at 1:41pm

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

▶ Reply

Permalink Reply by Lisa W on February 8, 2012 at 3:19pm

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)

▶ Reply

Permalink Reply by Renee on February 8, 2012 at 6:02pm

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.

▶ Reply

ModeratorPermalink Reply by Crystal on February 8, 2012 at 11:53pm

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

▶ Reply

ModeratorPermalink Reply by lori on February 9, 2012 at 7:17am

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

▶ Reply

ModeratorPermalink Reply by TracyZ on February 9, 2012 at 11:40am

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.

▶ Reply

ModeratorPermalink Reply by Crystal on February 9, 2012 at 3:35pm

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

▶ Reply

Permalink Reply by Lisa W on February 9, 2012 at 9:06pm

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

▶ Reply

Permalink Reply by razzle51 on February 10, 2012 at 3:55am

went to a ER and the Er doc told me everybody has Chiari . My husband and I got up and left that hospital...

▶ Reply

Permalink Reply by Christine on February 10, 2012 at 7:58am

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

▶ Reply

Permalink Reply by Diane John Jr Oliver on February 10, 2012 at 9:22am

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