Chiari and Syringomyelia Australia

19/11/2025

Please remember that while hearing loss has been noted in some it’s not an overly common symptom and there isn’t enough research to understand why and if it’s definitively linked. More research is needed and it’s important to always check for other causes to ensure nothing is missed that could be treated. Right now it’s listed as a plausible symptom but poorly researched.

Hearing Loss and Chiari

PDF version; https://www.conquerchiari.org/library/index/click/858

11/11/2025

Did you know you can ask your GP for an indefinite referral – so you don’t need a new one every year? Or ask to be sent for free to a public hospital clinic? Here are ...

05/11/2025

Have you seen our new website yet? 💻

It’s fresh, super simple to navigate, and packed with useful information.

Explore our Resources Hub to find videos, guides, and infosheets – like the one on workplace adjustments for POTS.

Visit the Resource Hub today: potsfoundation.org.au/the-knowledge-hub/

04/11/2025

The ASAP 37th Annual Conference videos are uploaded for viewing.

Playlist
https://m.youtube.com/playlist?list=PL3ddxByyGxoXVw80GjJ_y13YaxUnjv1ym&si=zbQGyBdfVTUVYjMP

31/10/2025

Chiari Malformations are not rare, but having so many in the same family is. Normally this is related to also having connective tissue disorders as well but they say around 13% ish are genetic which ironically is the same percent who also have EDS.

Paul and Ashlee Higginbotham didn't understand why their daughters kept exhibiting strange symptoms. Over the course of two years, the girls were all diagnos...

31/10/2025

Without MRIs we would have little help so thank you for your work.

Raymond Damadian, Creator of the First M.R.I. Scanner, Dies at 86 - The New York Times ❤️✅

30/10/2025

Interesting outcomes, generally it was considered if one had imaging showing both Tethered Cord and Chiari to try the tethered cord surgery FIRST. That way if in the individuals case it ended up being connected one surgery would helpfully be enough. If not then both surgeries were required regardless. Sounds like in most of the cases both surgeries would have been required. Be interesting what the groups who claim filum diseases as the underlying cause of Chiari, Syringomyelia etc will think about this.

🧠 New Research Update: No Link Found Between Tethered Cord & Chiari in Children

A new study from the University of Michigan found no evidence that Tethered Cord Syndrome (TCS) occurs more often in children with Chiari malformation than in the general pediatric population.
While some children may have both there is currently no evidence to support a link between the two.

📖 Read the full October 2025 Research Update below and help us continue making Chiari research freely available.

PDF version: https://www.conquerchiari.org/library/index/click/855

29/10/2025

Enough people with Chiari have Idiopathic Intracranial Hypertension (IIH) that this is relevant. There was whispers how GLP-1 (ozempic and other meds) this might be helpful for IIH beyond weight loss. This is a great start at looking at a novel medication and new choices/options in meds is always helpful.

GLP-1 RA therapy in IIH is associated with significant reductions in medication use, symptoms/signs, and procedural interventions, suggesting its potential as a management strategy. Further prospective studies are warranted to confirm these findings.

28/10/2025

https://tams.tidyhq.com/public/schedule/events/78250-tams-and-active-health-clinic-webinar-1-dietetics-for-adults-and-children-with-mcads

27/10/2025

🧠 Research Update: Surgery Reduces Syrinx Size 88% of the Time.

A new meta-analysis adds strong evidence showing that decompression surgery for Chiari patients with syringomyelia can reduce syrinx size or resolve it nearly 9 out of 10 times.

While more research is needed to compare surgical and non-surgical approaches, this study reinforces the importance of evidence-based Chiari care and provides encouraging results for patients and doctors alike.

📖 Read the full summary in our October 2025 Research Update below and support our mission to make Chiari research accessible to all.

PDF link:https://www.conquerchiari.org/library/index/click/856

24/10/2025

𝐎𝐜𝐜𝐢𝐩𝐢𝐭𝐚𝐥 𝐍𝐞𝐮𝐫𝐚𝐥𝐠𝐢𝐚 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲
Do you have ON?
Occipital Neuralgia (ON) is a condition that occur in people for many reasons - but can be a complication for some after Chiari Surgery.

Due to the nature of the surgery and the are of Chiari compression we run the risk of developing this pain. Often described as a stabbing pain along the occipital nerves at the back of the head (see pic 2 for example).

Treatments can range from wait and see if they settle, oral pain management, injections, nerve blockers/ablation etc. Both neurosurgeons and pain management deal with this disorder if you feel you need support.

𝐂𝐡𝐢𝐚𝐫𝐢 𝐚𝐧𝐝 𝐒𝐲𝐫𝐢𝐧𝐠𝐨𝐦𝐲𝐞𝐥𝐢𝐚 𝐀𝐮𝐬𝐭𝐫𝐚𝐥𝐢𝐚

23/10/2025

🌻 Invisible Illnesses Week 🌻
This week, we shine a light on the conditions that can’t always be seen — but are deeply felt.

For millions of Australians living with chronic pain and other invisible illnesses, daily life can be a constant balancing act. Pain doesn’t always have visible signs, and too often, people are met with misunderstanding or disbelief.

At Chronic Pain Australia, we stand with everyone navigating these unseen battles. You deserve compassion, validation, and support — not judgment. 💚

Let’s use this week to start meaningful conversations:

🗣️ Believe people when they share their pain.

💡 Learn about invisible conditions and how they impact daily life.

🤝 Advocate for empathy, accessibility, and understanding in workplaces, healthcare, and the community.

Because just because you can’t see it, doesn’t mean it’s not real. 🌻