Please help us to receive better medical and follow up Care and Services of Arachnoid Cysts here in Australia.

My name is Leonie Axton – Hooper, I am asking for your help.  

We are very behind here in Australia with treatment of patients with Symptomatic Arachnoid Cysts. It is always difficult to receive treatment as many Drs are led to believe they are non-symptomatic and not the cause of a patient's symptoms.   Due to outdated medical literature many patients have found they have not been told of findings of an Arachnoid Cyst on their brain because when undergoing a brain scan for symptoms many radiologists pass them off as incidental findings. 

It has always been a highly debated issue on how to treat this condition and  when we as patients do manage to find a neurosurgeon who understands the Arachnoid Cyst Symptoms and how to treat us, most new patients become very stressed because it’s not a condition widely known about and there is nowhere to find support and information.  

If a  Surgeon decides he will treat a patients A/C, the  patient will then be sent home but they don’t inform us of the lifelong issues laying ahead of us, as this is a complex condition that not enough is known about. When these symptoms arise it impacts the life of the patient, their family and their carers.  

The treatment for an a\c if it has been decided to operate on a symptomatic patient - is either a craniotomy and or fenestration where a piece of the scull is removed or depending on the position of the cyst in the brain a burr hole is made to access the cyst to try to either remove the cyst or pierce holes in it like putting pin holes in a balloon, then the fluid absorbs into the brain.

If this is unsuccessful as a/cs can grow back then a shunt is put in place which allows the fluid to drain into the abdomen. The problem being shunts eventually malfunction or become blocked from tissue from the body or as children grow they need to have a bigger shunt, so this means further surgery.

The membranes of the walls of these a/cs are very thick and are very hard to dissect so if left to press against brain structures, our brains are compromised.  Yet patients with this condition are overlooked. Perhaps also specialists fear the outcomes of unsuccessful surgery or shunt failure and so it is just too complex for them to look after a patient with an a/c.  

For many years this situation has not improved for patients with this condition and we would like to know why?

Usually we are sent to so many specialist non related to our condition or told we are not symptomatic when we are. A lot of our children miss a lot of school due to debilitating headaches as the csf (cerebrospinal ) fluid  on our brains and spinal cords build up in a balloon or create a web in one of the three layers of tissue that surround the brain or spinal cord and cause massive pressure on these areas.  

We have hearing and eyesight issues, seizures, chronic pain throughout our bodies, memory loss, some of our children are mentally or physically delayed. Some adults and children are unable to walk or walk with a stagger or are unsteady from  constantly being dizzy when standing and other cognitive issues.

We have bladder and bowel dysfunction. We also have change in mood and depression associated with acquired brain injury. We all suffer with fatigue and exhaustion and pressure headaches.  

Patients with spinal cysts or a spinal Arachnoid Web suffer blocked spinal canals and pressure resulting in blocked csf fluid traveling to the brain leading to acute deviation of spinal nerves fatigue myelopathy/weakness from compression causing extreme back and leg pain also bladder/ bowel disfunction, temperature and sensation defects, paralysis, Arachnoiditis, sciatica and these webs and cysts  lead to headaches, fogginess and dizziness with the result of focal Arachnoiditis and cord displacement with Caude Equine progression.   

Daily on our support pages online, we have adult  and pediatric patients and families experiencing an ongoing lack of empathy, support and medical intervention, they are continually coming away from appointments feeling they are not believed of their symptoms, as a result of our patients trying to  advocate strongly for themselves for help and understanding, they are turned away from any suggestion they make, that their a/cs are causing their symptoms. When a patient or family becomes destressed because of this, quite often the Dr will recommend the patient see a psychologist. Without the physical cause of their symptoms being investigated.    

This is what our patients face and most of these families have no idea that they will need to have the correct diagnoses and not be gaslighted due to many of our  Drs not understanding or knowing about this condition. If our children are not diagnosed and treated correctly with early intervention, then they will go on to have these problems and  complex medical issues resulting from  acquired brain injury resulting from delayed intervention.  This in turn has a future effect on our welfare and disability support services.  

Here in Australia in our Medical System we have so much  conflicting information on who of symptomatic patients should suffer symptoms from an Arachnoid Cyst?  We appear to only ever have a handful of neurosurgeons who a familiarize themselves with how to treat Arachnoid Cysts, but even though we have these few surgeons available they will only take on a handful of cases turning the majority of our patients away.   We eventually develop anxiety and depression but without intervention of our deteriorating symptoms this can become prevalent.  

By signing this petition you will be helping us create better awareness of this debilitating neurological condition and also show your support in wanting changes made throughout the medical community and services- for  Arachnoid Cyst and Spinal Cyst patients here in Australia.

This is an excerpt taken from a letter that has been sent to the Hon Minister for Health,The Australian Commission on Safety Quality and Healthcare Standards,The Healthcare Complaints Commissioner and The Australian Goverment Deptartment of Health. 

If you wish to read the full letter you can go to https://www.acystawareaust.com.au

you will find the full letter on the Who We Are page  of our website.

Leonie Axton-Hooper/Arachnoid Cyst Awareness Australia Support Group    Contact the author of the petition