Chiari and Syringomyelia Australia

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Chiari and Syringomyelia Australia Australian awareness page and support group for those diagnosed from Chiari and/or Syringomyelia.

Chiari and Syringomyelia Australia is the biggest and longest running support group for people with these conditions in Australia. We are here for people with Chiari and/or Syringomyelia along with related condition and aim to spread awareness, advocacy and soon to become a non-proft organisation so we can raise money to fundraise and push for national awareness. We run a support group on face boo

k as well where our 2000+ strong membership has grown in strength and knowledge to help people through Australia and even New Zealand to get diagnosed and proper treatment faster.

20/03/2026

Some humour

12/03/2026

Join Us Virtually at Converge 2026!

Can’t make it in person? No problem! You can still be part of Converge 2026 from the comfort of your home.

Virtual tickets are now available for our POTS community as well as practitioners.

Stay connected with:
• Inspiring presentations
• Expert panels
• Community discussions

Plus, you will have access to presentation recordings shortly after the event so you can view at your leisure

Grab your virtual ticket today: www.apfconference.com.au

Don’t miss this chance to learn, connect, and be part of the conversation — wherever you are!

𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲: 𝐒𝐲𝐫𝐢𝐧𝐠𝐨𝐦𝐲𝐞𝐥𝐢𝐚The 28th of February is a day to raise awareness for rare diseases. A rare disease impact...
27/02/2026

𝐑𝐚𝐫𝐞 𝐃𝐢𝐬𝐞𝐚𝐬𝐞 𝐃𝐚𝐲: 𝐒𝐲𝐫𝐢𝐧𝐠𝐨𝐦𝐲𝐞𝐥𝐢𝐚
The 28th of February is a day to raise awareness for rare diseases. A rare disease impacts fewer than 1 in 2000 people. Syringomyelia is found in ~ 𝟖 𝐢𝐧 𝟏𝟎𝟎,𝟎𝟎𝟎 so definitely meets the criteria of a rare disorder.

Our disorder may be rare but around 8% of Australians suffer some form of rare disease so awareness is crucial.

Info: https://www.rarediseaseday.org

𝐂𝐡𝐢𝐚𝐫𝐢 𝐚𝐧𝐝 𝐒𝐲𝐫𝐢𝐧𝐠𝐨𝐦𝐲𝐞𝐥𝐢𝐚 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.chiariaustralia.com.au

💙

04/02/2026
Chiari I Malformation: Review and Update of Current Treatment Options: With a total of 108 articles this review has allo...
01/02/2026

Chiari I Malformation: Review and Update of Current Treatment Options:

With a total of 108 articles this review has allowed some synthesis of the treatment options for Chiari. The standard posterior fossa or “Chiari Decompression” still remaining the gold standard with individualised changes when comorbid conditions like hydrocephalus, cervical instabilities,
And ventral brainstem is noted.

Minimally invasive surgeries are still being investigated and showing promise for offering alternative options in hopefully the near future.

Ref: https://pubmed.ncbi.nlm.nih.gov/41586467/

www.chiariaustralia.com.au

25/01/2026

🔥 Just published: A new paper by Dr. Blitshteyn and Dr. Grubb in the Journal of Psychosomatic Research where the authors emphasized, based on their experience and expertise, that distress in patients with POTS are driven predominantly by ineffective healthcare and not patients' attitude. This paper was in response to a UK study that suggested that patients with POTS need to be treated with cognitive-behavioral therapy because they were distressed. As a counterpoint to the study's conclusion, Dr. Blitshteyn and Dr. Grubb argued that there is a great need to treat patients with POTS with medications targeted to reduce autonomic symptoms, which then results in reduced disability and distress.

Read full paper here: 👇
https://t.co/xFnY0QGhPr

𝐂𝐡𝐢𝐚𝐫𝐢 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡This retrospective study looking at 241 patients and the Cilvoaxial angle (which can be a marker of brain...
25/01/2026

𝐂𝐡𝐢𝐚𝐫𝐢 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡
This retrospective study looking at 241 patients and the Cilvoaxial angle (which can be a marker of brainstem compression) found the posterior fossa decompression did not cause an exacerbation in the CXA. This mean the Chiari decompression didn’t cause an increased risk for those with Complex Chiari/Chiari 1.5 and remains the gold-standard first-line treatment even with complex cases.

This helps for those whose CXA isn’t too low or at a borderline level to decide whether to add fusion or stick to the more conservative approach. As it seems unlikely to worsen due to the doing the decompression first/only.

Ref: https://pubmed.ncbi.nlm.nih.gov/41569659/
𝐂𝐡𝐢𝐚𝐫𝐢 𝐚𝐧𝐝 𝐒𝐲𝐫𝐢𝐧𝐠𝐨𝐦𝐲𝐞𝐥𝐢𝐚 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

www.chiariaustralia.com.au
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21/01/2026

Syringomyelia is an uncommon condition, affecting around 8 in every 100,000 people.* It is often linked to Chiari malformations or previous spinal injury, which is why understanding its prevalence can support timely recognition and referral. Macquarie Neurosurgery & Spine provides care for complex spinal and craniovertebral conditions, supported by active research and specialist clinical experience. 🔍

Learn more about syringomyelia and related conditions on our website.
🌐 https://mqneurosurgery.com.au/syringomyelia/.

* Source: https://my.clevelandclinic.org/health/diseases/6126-syringomyelia

All information provided by Macquarie Neurosurgery & Spine is general in nature and is not a substitute for individual medical advice. Neurosurgical conditions and treatment options vary between patients. Please consult a qualified health professional to discuss your specific symptoms, diagnosis and care needs.

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