Frequently Asked Questions

How many peple have Chiari?

The current statistics sit at 1 in 1000 people have Chiari. Though professionals believe this is a conservative and that Chiari is more prevalent. 

Does size matters?

Mostly no. Current research has only found that the of the herniation is related to the development of symptoms. So someone with a 24mm herniation is more likely to develop symptoms compared to a 6mm herniation. 

It is not related to the severity of the condition, level of symptoms, type of symptoms, surgery etc. 

It does appear there is some genetic component to it, but it's not the case for everyone. Duke University is doing research into identifying the genes associated with this. 

Is Chiari Fatal?

Chiari is rarely fatal and most go on to live late in life. The small cases of fatality outside of surgical complications are from central sleep apnoea. If worried this can be tested for and if found there are treatments available to decrease this small incidence. The surgery is also quite safe in most cases with very low mortality. 

Can Chiari 1 progress to type 2, 3 or 4

No, that is not how it works.

The types are distinct entities not a continuation of the disorder. They each have a very different impact on the cerebellum/craniocervical junction. Type 3 and type 4 are usually fatal before or soon after birth with rare cases that survive have severe neurological issues. 

If you have Chiari 1 it will stay Chiari 1

I'm having a lot of pain what can I do?

There are doctors who specialise in pain management, speak to your GP or any of your doctors for a referral. They have taken advance education in managing pain and have a lot to offer including medications, procedures, education, psychological, devices etc available to work with. 

Do I need an upright MRI to diagnose Chiari

Technically no. Currently, there are is only one upright MRI in Australia that does brain MRIs (there are other upright MRI places but as of 2019 they don't do upper spine/brain). It is also imaging with no medicare rebate so you would have to privately fund it yourself. currently. all members of our group have been diagnosed by conventional supine MRI's and only a small handful have gone on to get upright MRI's for other issues.

 

There is no medical evidence or research showing that this type of imaging is helpful or that it finds Chiari that is missed by a standard supine MRI. All the information about upright MRI and Chiari diagnosis is anecdotal so far and mostly mentioned by the patients without strong evidence. There is also no normative data used for upright MRI's that are agreed on.

So we aren't saying don't get one, but it is definitely not a required test to diagnose Chiari. 

Surgery sounds scary! Do I really need it?

Not everyone with Chiari will need or even be eligible for surgery. We don't know why yet but some people may never develop any symptoms. Some may only even have mild symptoms that never get any worse. And some deteriorate quickly. 

 

So no you may not need surgery. But you need to discuss this with your specialist.

How do I know I need surgery?

That is something that is very individual. Your doctor will give you an indication of whether surgery is an option. And that is based on symptoms, your anatomy, what is seen on the MRI and other health-related aspects. 

 

Sometimes a doctor will leave it up to you whether you go ahead with the surgery or not. In this case, consider the outcomes given if you don't have surgery and the possible benefits of given to you. 

 

No one can answer this question for you but you. 

How much does surgery cost? Do I need a private surgeon?

Surgery starts from around $0-$12,000 (or more if you go private without private health). 

 

Around half of our members have gone private and the other half went public. And there hasn't been any difference in the outcomes that can be seen. So no you don't necessarily have to pay top dollar for a good outcome. 

Is surgery always succesful?

No, but thankfully the majority of cases are positive. Your doctor should discuss with you what they hope will improve or resolve with the surgery. Most of the focus of Chiari surgery is relieving headaches. 

Complications can occur, but they are not common. 

 

Other sites claim up to 50% success rates for Chiari surgery (without other conditions), 10-30% find a significant improvement and 10-20% have no improvement or require further surgery.

Can you recommend a Chiari Specialists?

We don't have a definitive list of doctors. We do keep a list of doctors that have been recommended by members of our group. This can be found on our private support group <HERE> or you can contact us for some names. Due to the nature of doctors not always being ideal for all we do not recommend any specific doctor, nor are we affiliated with any doctor. This list is purely from happy patients who have been treated by them and what worked for them may not work for you. So this list is a guide only. 

How long is recovery from surgery?

This can range greatly but for adults, it's usually 1 day in ICU for closer observation with 3-5 days in the hospital after that. 

 

It can take several weeks at home to start getting over the surgery and deconditioning from being in the hospital. It can also take up to a year for things to fully resolve.

 

Just remember your body has been one way for years and needs time even with a perfect surgery to recover and adjust to its new normal. Be kind to it. 

Can I get the disability pension?

A diagnosis is not enough for automatic acceptance for the disability pension. Contact Centrelink or speak to your doctors.

Yes, people who have Chiari have had enough symptoms to meet the disability requirements to obtain the disability pension. So you if you are having disabling enough symptoms you may be eligible. 

You may also want to check your superannuation for income protections and Total & Permanent Disability(TPD) to see if they might be helpful. 

When is Chiari Awareness Month?

September! The entire month of September is dedicated to raising awareness for this condition.

What is the Awareness Colour?

Royal Purple! And to distinguish ourselves from other purple ribbons we put a zip on it!

What is with the zipper?

The term zipper head is used to describe someone who has had the decompression surgery. As the scar frequently looks like a zipper. Its an affection term and we use the zipper in our awareness ribbons. 

What's Crown's for Chiari?

Crown's for Chiari is a new campaign created by Chiari and Syringomyelia Australia to raise awareness. It's on the 2nd Saturday of September (12/09/2020) wear we ask you to wear a crown and share pictures on social media with the hashtag #crownsforchiari 

You can create any crown you want. You can buy one, make one or even digitally add one on. The more creative the better!

Where can I buy awareness items?

Chiari and Syringomyelia Australia have a few online stores. Click HERE to be taken to that section of our site and see what is up. Currently, all funds raised with this will go back into the funding for the running of the website. The more money we start getting we will work out plans to use the surplus to donate to research and other ideas. But all monies will be used directly for the running and improve Chiari and Syringomyelia Australia. 

Can I raise money/send money for this condition?

Yes! Currently, we are not accepting donations, but you can shop at our awareness stores to get items which will send some dollars our way.  (the more popular this gets the more items and designs we will work on).

 

If you want to support research go to Conquer Chiari 

 

Other places that are giving great support is also the Brain Foundation 

 

The moment we can accept money we will put a PayPal link up in the donation area. 

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