Story from the UK

Another version of a sad story out of the UK:

http://www.dailymail.co.uk/news/article-1293996/JLS-songwriters-wife-died-agonising-headaches-blamed-pregnancy.html

Cheryl

Cheryl,

Really? It affects 1 in 1000? With it being so prevalent why we don't we hear more about it?

Ahhh, yes, it must be the painkillers causing it, not the PAIN!

How sad.

1 in a 1000 doesn't sound that rare to me. Unusual yes, but rare?? When you think of how many people go through a hospital or emergency room, a condition that affect 1 person in a 1000 would be seen several times a year.

Why is when we go in complaining of horrible headaches we are treated so shabbily? It's our freaking brain!!! Check out the things that might be really bad before you write us off. Check for a tumor, or a bleed, a chari malformation, etc. Look for why we might be having such pain before you call us drug addicts and such. I am so disgusted by this.

One of my best friends lost her mother to brain cancer. She suddenly was having headaches, balance issues, deppression, and other problems and was misdaignosed as being depressed. It wasn't til a YEAR later and after her husband raised holy hell that an MRI was done. By that time the tumor was the size of an orange and inoperable. When someone who is healthy suddenly has headaches and other brain issues, an MRI should be done immediately.

I can understand when you have headaches your whole life that migraines are an easy DX... but not when they come out of nowhere. Do your freakin job!

This really stuck a nerve.....
Vent is over now.

It's not just getting an MRI, it is the interpretation of the MRI that counts also!

Anna had four MRI's in five years, prior to being diagnosed with Chiari. Mayo Clinic looked back at those four MRI's and said Chiari was on every one of them. But the biggest neuro clinic and the university hospital in MN (separate entities) missed it all four times.

This is a common story among Chiarians. How Chiarians can go for years before being diagnosed.

Quite discouraging.

Cheryl

Without prejudice I should just point out that this is our Daily Mail.
The newspaper version of the National Enquirer when it comes to point making and controversy.

I don't think this story has made the news or even other papers.

People knock the Mail, perhaps in their attempt to dig a story and sell papers they actually help.

Pen

I am with Kaiser here in Northern California and when I went to my ENT for the sudden onset of headaches and a bi-lateral temporary hearing loss, she scheduled me for a scan to check for a brain tumor. Later when I went to a neurologist for the headaches, he checked to make sure that a scan had been done.

Whether they checked for Chiari, I do not know.

Martin

my neuro travels round the sound regularly teaching gps how to diagnose headpain when it is not just straight forward tension headache etc and when they should be investigating further. if only they all had to go for some of his training!

I've never been checked for this. I have 24/7 various types of headpain. I just saw a pain specialist. No mention.

Have they done an MRI? and if so had more than one Neuro review it?

It's scary how much pain we can be in and get no relief or true belief that yes, it really is that bad. There are good doctors out there but a lot more who are in too much of a rush to really help.

Pen, here is another version of the story:

http://www.thisisbristol.co.uk/news/Rare-brain-condition-took-Sally-soon/article-2387655-detail/article.html

Pain doctors may not even know about Chiari. Neuros should know about it.

Cheryl

1 in 1000 doesn't sound rare to me. It sounds like a lot. Picture the pop. of the earth. 1 out of 1000 seems like a large amount. I wonder how many have it and are undiagnosed. I've read you can only see it with an MRI. MRI's, in the scheme of things, have not been around long.

"How many people have Chiari?

There is no exact answer to this, because a rigorous study to determine this has not been performed. Once thought to be rare, the increased use of MRI's has shown that Chiari is much more common than originally believed. Confusing the issue is the question of how you define Chiari. Many people may have cerebellar tonsils that descend out of the skull, but they have no symptoms and probably never will. Studies have shown the incidence of this tonsillar ectopia may be as high as .5%-.7% of the general population. However, this does not mean that all these people have Chiari. Estimates for the number of people with true Chiari range as high as 500,000 in the United States. A more conservative estimate of 300,000 would mean that 1 in 1,000 people have Chiari, or 0.1% of the population."

From Conquer Chiari.

Cheryl