These stories are the Journey`s of patients that have Arachnoid Cysts that are symptomatic. Some patients and or families and carers have been able to find assistance through advocating strongly to be able to receive treatment.

 

 

Sadly though it is a huge struggle and so some patients at present are suffering on a daily basis. These Cysts can be found in our brains or on our spinal cords causing many debilitating symptoms affecting our daily lives.

 

In Australia, not all Neurosurgeons and Neurologysts understand the complexities of Arachnoid Cysts and do not have knowledge of the most recent studies and literature to date.

 

This can cause confusion and frustration to patients, families and carers because there are varying opinions because of outdated literature.

 

Because of this, many patients go on to have permanent disabilities before finally receiving treatment.

 

We cannot get research in Australia because there are only a minority of patients here in Australia as opposed to other neurological conditions.

 

However worldwide we have patients in other countries who are being treated with the most recent and up to date care.

 

Statistics show we do have more patients who have not been diagnosed correctly or are newly diagnosed.

 

Please post your journey here, so we can create more awareness here in Australia of this condition and the affects it has on our patients.

 

We would also like to hear of your success stories too, please can you let us know of your Neurosurgeon, so we can help other patients to receive proper care and treatment too! Thankyou.

 

We welcome the medical profession to view our stories and research further for our condition so we can receive the best care and treatment going forward.

 

Leonie’s Story:

My Journey began in my twenties. It started with blured vision, headaches, exhaustion, seizures and memory loss. My work colleges noticed my tremors and impaired slurred speech, they thought I was hungover from a big night out. All of this was causing a decline in my quality of life. I was a wife, mum and a retail manager. Up until all of this started happening, I had loved my life. Finally after months and months of complaining to my general practitioner and visits to emergency at our local hospital. I was finally given a brain scan. This is my story!

 

My children spent their lives waiting around emergency rooms or at my hospital bedside visiting me while I recovered from another round of neurosurgery or multiple seizures which needed to be controlled or the serious depression I’d fall into because as a young mum, I could no longer be independent and be well enough to care for my children.

I remember once when my daughter was about two her dad bought her and my six year old son to visit in hospital while I was recovering from a craniotomy and fenestration where my neurosurgeon had tried to pierce open the huge cyst I had measuring 4.5cm transverse, 11.5cm cephalon caudal and up to 16cm anterior posterior with displacement of, temporal, frontal and pariental lobes. All I could see of her was her little hand trying to reach up to grab mine and her pony tails on either side of her head were crooked because my husband had tried to do her hair to make her look nice for her visit. My son had on miss matched shorts and t-shirt.

My surgery three weeks before had failed as a shunt that was inserted could not drain the pressure off my brain. The CSF fluid was too thick to drain through the catheter as it had been their untreated since birth. My diagnosis for this condition was a huge Arachnoid Cyst causing pressure on my brain. It was 1988, I was in my twenties.

Nobody in the eighties could tell you the outcome following much needed brain surgery and this huge thing affecting my brain. I found I would have outbursts and a complete personality change. My outbursts would happen when I was under stress from being physically exhausted and in pain that my brain couldn’t cope. I found it hard to concentrate, so I couldn’t hold a conversation well at all. I was no longer allowed to drive because of seizures, my memory was terrible and I would get stuck on words or trying to manage one thing, then forget and go off to do another. My organisational skills were absolutely terrible and I would get confused. The children wouldn’t understand I still had many issues to deal with.

Due to my personality changes and the stress of being in and out of hospital and the bills mounting up from all the trips to and from Melbourne, parking fees, specialist bills the list went on, my husband and I broke up because we couldn’t cope. The problem was I had no family to help as my elderly mum was looking after my sister who has autism and lived interstate. I had also become very withdrawn from society. I`d be scared of having a seizure down the street and I was taking so much anti seizure medication to control them. I was continually groggy and hated having to take it. Sometimes I’d forget where I was or if I ran into a neighbour or friend I was unable to concentrate on their conversation. So therefore with no family to help, the children’s school contacted family services. I look back now and wish that the services provided today for families, could have been there for me and my family but unfortunately I didn’t know or understand how to advocate for myself and I didn’t have the strength. These services couldn’t offer any help and I was concerned my children would be taken into care. This did not happen but it was extremely worrying for me.

My children and I managed to battle through. We had good times when I was well. It would usually take about two years to be feeling back to reasonable health but while I was recovering, they had a lot of difficulties understanding my brain injury and so did I. I would manage to find what strength I had in between operations to work and become good with hiding my disabilities, but work colleges would notice and remarks would be made or I would be having to explain why I wasn’t organised or slow at things and although physically it didn’t show, my cognitive skills were terrible. I relied heavily on diary’s and sticky notes. Being in a management roll, I could delegate out jobs I couldn’t manage, but take on my fair share of other tasks and arrive early or stay back late so I could concentrate better in a quiet environment. I would get home at night physically and mentally exhausted and unable to talk. On my days off I would sleep to catch up. My children didn’t understand and felt I was shutting them out. My outbursts would come out and my children learnt to do the same, so arguments became very stressful throughout their teens. They suffered as much as I did.

I did have another shunt inserted and it was found some of my brain was pinned down by the cyst, so although part of my cyst couldn’t be drained, this remains the same size in measurement, there is part of it that causes pressure build up and can be drained, so the catheter runs from it and the front of my brain. Over the years, I have had seven more shunt revisions or replacements. Ten surgeries in total, as the shunt can eventually block. In 2011, I eventually had to give up work due to the recovery process of brain surgery getting harder as I grow older.

My children are grown now and I have remarried. I have always worried that my husband and I will suffer the same stresses. The very first surgery he went through with me, no one at the hospital could tell us of any carer accommodation close to the hospital, nursing staff had no idea where to direct us. We lived five hours away and as my shunt suddenly malfunctioned leaving me very unwell, it was emergency surgery so we were not prepared. After two expensive nights in a motel, he slept in his car and showered at a roadside café. I was unaware of any services that were able to help our situation.

 

Here in Australia, we are not as advanced with our research as other countries, they are so much more up to date with the disabilities associated with Arachnoid Cysts. It doesn`t matter what size they are, if they are pressing on that part of the brain that is affected, this will cause neurological difficulties. I wish I had understood much more about this in my younger years, my son also has an Arachnoid Cyst on the left side of his brain, doctors told us because it was small 2cm x 2cm it would not cause difficulties. However I think in his adult life, he is suffering with the some of difficulties and symptoms I have myself. I had not realised this until I started to research this neurological condition.

Three years ago I became very overwhelmed and depressed as I had always relied on the opinions and advice from my Drs, but although they could prescribe medications and preform my surgeries, they all had different opinions with my treatment plan and this made things very confusing, also my general practitioners never really understood my condition. This happened throughout my life. I had always felt very insecure over knowing that no one really fully understood this condition and ongoing symptoms that came with it. Because of this, I never really understood what was happening to me either and I was feeling pretty lost. I also found that because there was not very much information available, my friends and some members of my family wouldn’t believe my symptoms. This has always been a challenge because my symptoms can’t be seen and so I physically do not look unwell. I had also had never met anyone else with an Arachnoid Cyst. My husband was having difficulties too, although he was very understanding and patient with me, like any carer, he has his struggles.

I decided to have a talk with my Dr and explain how I was feeling and she sent a referral to the complex care department at our hospital. I had a nurse come and visit us at home. I explained how I was feeling and that I really wanted to find out much more about my condition to be able to advocate for myself. I was tired of conflicting decisions over my care with the medical community. This nurse made some recommendations and referrals, this was to change our lives and make everything much better an easier for us.

The fist referral she made was for my husband. This was to have a carer support agency get in touch with him. This was Villa Maria. This agency offers many services to people with disabilities. I had never thought of myself as having a disability, but she explained I have an acquired brain injury and because my condition was so rare, I had fallen through the cracks in receiving any sort of assistance. Villa Maria offers ongoing support and information for Carers and Families. Their support was so valuable and through them we came in touch with Brainlink, a wonderful organisation who also offer services for families. I attended their acquired brain injury support program and met other inspiring patients with neurological conditions. We found out about services available to patients and carers like the Victorian Accommodation and travel scheme available to patients traveling over 100kms to hospitals. We found out about hospital advocates, who can act on your behalf if you are too unwell to explain your situation and if you are unhappy or unsure of your care while in hospital. They are able to be contacted through the welfare departments in all hospitals or you can ask for them though your treating medical team.

The most important thing she did for me was to explain that if I had an assessment with a neuropsychologist, this would explain to me and my husband what parts of my brain are affected. So a referral was made. It has been one of the most valuable reports I have had done and explains to me and others and the medical profession how my condition affects me.

I also had some homecare arranged for me and my carer found some face book groups, I had never been tech savvy, so I was absolutely surprised to finally connect with other patients, it was just so bittersweet to share our experiences.

When I was in hospital for my second last surgery, I asked for a referral to the pain management team, through the information I had finally found. As I had always had trouble getting my pain under control I thought I would ask. This has been such a big help, I now have a team who manages my pain.

I tell my story as I do not want to hear of families going through the situations I and my family have been through. My husband and I now have supports in place for both of us. This is a huge help. Many of these services are listed on this website and also facebook support groups where you can connect with many other patients going through this. You are not alone in your Journey.

 

Baby Benjamin’s Story:

Benjamins mother had to make one of the most difficult and heart wrenching decisions in her life. She was to place trust in her neurosurgeon and it took all her courage to agree to sign the papers for her three week old little baby boy to have brain surgery to remove the Arachnoid Cyst he was born with. She had realised how it could affect him and his future, so agreed with the doctor that it was the right thing to do. The cyst was growing and beginning to press on his ventricles.

His Mum shared her story on face book support groups, she read of people experiencing this condition and how it changed their lives. She was fascinated to see four year old children with all sorts of disabilities from their Arachnoid Cysts receive surgery and begin talking and leading normal lives. This helped her to make her decision.

Baby Benjamin had to undergo two MRI’s before and after surgery. At three weeks he came through his surgery successfully and an MRI at seven weeks showed a successful result, the pressure was no longer pressing on his ventricles.

One year on, Benjamin has met and is still meeting all his baby milestones! He is healthy and a very happy gorgeous little boy and very cheeky says his mum! Benjamins family are from America and were happy to share their success story! Recent studies show the earlier these Arachnoid Cysts are operated on, children can go on to lead healthy happy lives.

 

Jades Story:

Jade is a young mum living in Queensland with her three young children. Jade started her own journey with acute symptoms from her Arachnoid Cyst. Jades A/C was diagnosed weeks before the news she was having another baby. She had to be monitored extensively throughout her pregnancy. She now has three young children, the eldest boy has Autism.

She had been unable to be seen by a neurosurgeon for twelve months. Even though she was a category one on the waiting list, which is normally a thirty day wait, she was told because of their case load, she would be waiting the full twelve months. Until then she had been desperately trying to find a neurosurgeon with a knowledge of Arachnoid Cysts. She had been turned away often as the Drs she was seeing would not believe her, as they do not have up to date knowledge of the disabilities and symptoms these A/Cs can cause. Jade is existing with a declining quality of life.

As she tries to manage her young family, Jades symptoms are acute exhaustion, memory loss, she suffers with what she describes as explosive pressure headaches and stabbing headaches which leave her writhing in pain. She has vertigo and cognitive issues, there are many other symptoms associated with this condition. Jade has home services for her young boy with Autism, but the reality is she needs home services for herself.

This has been a real blow for Jade and her young family, any hopes she had for surgery and a better quality of life has been sadly diminished.

Jade did eventually find a neurosurgeon who could see her sooner. But unfortunately to date, she has been told that due to where her Arachnoid Cyst is. ( It sits between the frontal and parietal lobes as an Arachnoid Web traveling through the motor and sensory cortex of the brain.) She has been told it is inoperable.

To date Jade has not had Surgery.

Gracies Story:

 

Gracie is young and enjoying the life that a teenager of seventeen should be enjoying. However Gracies mum Alyshia and her family became increasingly worried as Gracie started collapsing and suffered a couple of seizures. Then she began loosing her eyesight at times and her hearing became a problem also. Also she had constant headaches and numbness in her arms and legs, her speech became affected. Gracie was told by doctors she suffered with anxiety.

In August of 2019, Gracie finally had a MRI and the doctors found her large Arachnoid Cyst taking up a quarter of her brain space. Gracie’s mum says from there she took Gracie to see two different Neurologysts who were not willing to look at Gracie having surgery to relieve her symptoms, they only wanted to medicate her.

The Family decided to reach out to renowed Neurosurgeon, Charlie Teo. Charlie Teo saw Gracie straight away and agreed to do surgery. Gracies home town helped raise funds for the surgery. Gracie had the latest key hole surgery to fenestrate (collapse) her cyst, preformed by Charlie Teo on the 5th of December 2019.

Within twenty four hours, post surgery, Gracie had experienced a complete turn around and felt well for the first time.

Alysha, Gracie’s mum said it was so scary and stressful, the wait through Gracie’s surgery, but so far she is doing amazingly!

It is a major Milestone that Dr Charlie Teo agreed to operate on Gracie and two other young patients with the latest most up to date surgery. All are going very well!

We are desperately needing this sort of awareness for other Neurologysts and Neurosurgeons to be up to date with the latest treatment for Arachnoid Cysts here in Australia.

Alysha says of their experience from all of this is, I just want everyone to go with your gut feeling and don’t listen when they ( the doctors) ignore your symptoms and diagnose anxiety, definitely get more than one opinion.

 

 

Angels Story to help her Mother and Create Awareness of our Condition.

Angels mum had been diagnosed many years ago and every day has been a struggle. Angle became concerned during a phone call in 2016, as her mother told her of her dizzy spells and headaches. Angels mum was upset that because of her Arachnoid Cyst, now she was having trouble with her memory.

Angel recalls her telling her how sick she was and that Dr’s had not taken her seriously. This is a very serious illness and she had heard so many stories on Face Book of people suffering with the same condition and get disregarded by their Dr’s and most are told its all in their head.

The grey Ribbon is used to represent brain diseases for awareness but Angel and her mum thought they would like a design that stood out, as we are not recognized as having very symptomatic illness by many.

Later after the phone call, Angel recalled her mums conversation, her mum also felt forgotten and the many patients are forgotten and this illness is forgotten and not recognized.

Angel thought of Forget me not flowers, she liked the idea as they come in many colours, are bright and are easily recognized. She chose these as a symbol. These flowers can represent that patients are not to be forgotten! So many patients feel they are forgotten! We suffer with this condition and are turned away and forgotten about by Drs.

So Angel thought of a memorable slogan. It is her way of taking a Stand to the world!!! Forget Us Not!!! My hope is that this will help us to be recognised more easily and that funding will be raised eventually so we don’t have more people suffering with this painful illness.

 

Sarah`s Little Boys A/C Spinal Surgery.

Sarah had never heard of Arachnoid Cysts, it wasn’t until she received the diagnoses for her little boy and after some research on some of our Facebook support groups that she was so shocked to find the problems they can cause.

Her little boy was healthy and going fine, until late evening on a Saturday night, he suddenly couldn’t walk!

One Hospital said it was growing pains and an orthopedic surgeon said it was physiological. it wasn’t until she took him to the John Hopkins All Children`s Hospital in St Petersburg, Florida that they were able to diagnose him.

The hospital explained to Sarah that because of where the cyst is on his spinal cord, anytime he would stand up the Arachnoid Cyst would compress on his nerves making him unable to walk.

Drs told Sarah that most of the time they leave these cysts alone, but because Sarah~ little boy’s cyst was causing issues they would remove it.

Surgery lasted about 4 to 5 hours and the A/C was on top of his spinal cord, so the surgeons had to remove T5 – T7 to completely remove the cyst. Sarah says the Dr’s were able to cut the A/C out completely and place the bone back. There was a possibility the surgeons would have to put pins in place, but it was found it was not needed.

The surgery went very well and after the first night when his IV drip was removed, he was able to walk to the play room at the hospital.

After three nights, Sarah’s little boy was able to go home. Sarah says his recovery has been very smooth and he is back to running, jumping and riding his bike everywhere! We were very lucky to find the A/C when we did!

 

Sarah R`s Daughter.

Sarah`s Eighteen year old daughter Emily, is suffering so much pain and discomfort from her spinal cyst.

Surgeons operated on Emily’s Spine in March 2014 when she was twelve because of her spinal cyst and then that same year in Septemeber she had to endure further surgery because of her spinal scoliosis.

At eighteen Emily struggles with ongoing pain and regulating her body temperature.

Emily’s Mum says her daughter is suffering so much but she has found neurosurgeons they have seen are just shrugging her symptoms off.

Unfortunately to date Emily has not found treatment to relieve her ongoing symptoms.

NB: There is just not enough research on spinal Arachnoid Cyst here in Australia and we have many patients suffering loss of bladder and bowel function, loss of sensation in hands, feet and legs causing inability to walk without the use of aides, chronic pain in their spine and legs and other area’s of the body as well as headaches and heart palpitations and regulating of temperature.

 

 

 

 

Sarah H’s Story.

My name is Sarah but I prefer Sa, I am 53. I live with my husband and two sons. I have another who is married, so now I have a lovely daughter in law.

My story is long and the short of it is, I have found with dealing with finding help and searching for answers is probably the hardest part of being unwell. I have come up against medical professionals who have shown me if you have nothing easy to diagnose, or apparent, then you are ok no matter what symptoms you are living with. when does quality of life become the important answer?

I have come away from visits to specialists and doctors confused and sad, instead of being supported and heard…..unless you are very focused, honest with yourself and strong and supported you end up with depression and low self esteem, believing you are not worth the extra effort it takes to find answers.

I was labelled disabled 11 years ago because I had fibromyalgia ( an awful neurogenic/arthritic illness)I was constantly being told it was causing my ill health and pain and there is no cure and very little in the way of relief and treatment, only to find out a year or so ago I have an Arachnoid Cyst on my left temple lobe.

This has been kept from me because it was nothing to worry about, the decision had been made for me by numerous doctors, that I didn’t need to know, ( it can be seen on scans going back to 1986).

Neurologically my whole body has been affected, every one of my senses, weakness, facial droop, my automatic responses, head nodding, the list goes on and on.

My functioning is getting harder and harder and now I am having seizures as well.

I have clear watery fluid dripping out of my nose as well. I am trying to find out if it is a cfs leak because it definitely isn’t a cold or sinus infection.

It is so hard fighting for yourself and looking for a chance to live and be out in the world again.

When my body and my eyesight allows… I cope by writing and creating art.

I have been fascinated by the human body but more so the face. it is where we connect, communicate and think…

The eyes are my number one obsession because in behind there, right behind our eyes is our brain, it is who you are, it shapes what you do, it connects you to everything and everyone.

I want to share my life experiences so it makes other peoples experiences easier.

In my Arachnoid Cyst Awareness picture you can see it was lying on my blanket, on my bed. When I took the photo I wanted to show that is were we spend a lot of our time…. not out of choice, but it is just what we need to do to keep our pain levels down and our energy up.

My moto is… It is, what it is and I have got this!

So its back to another neurosurgeon next week and I will gather all my faith and take along my hope and hopefully walk out with a plan and my dignity.

Sarah works with with mediums for her Art- such as feathers from her pet chicken who lives in her house and sits and keeps her company. She hatched in her hand 6 years ago. She also uses snake skin from her sons snake.

She created a few different art series last year all before knowing about her brain cyst.

She was working with the brain and brain stem as trees. Sa says- I use feathers as my spirit,( her chicken also suffers with neurological problems and seizures)and I also use snake skin as a metaphor for shredding preconceived ideas about myself and health in general.

We hope to see some more of Sarah’s art works in our in our Arts and Craft co-op soon to be online. The Arachnoid Cyst Awareness Australia Artisan Arts and Craft hub.

 

Fionas Story of her son Blake

 

Blake has a 10cm arachnoid cyst in his right frontal lobe with skull moulding and has also been recently diagnosed with ASD level 2. His mum Fiona believes the two are entwined but the specialists say this is not possible. Blake suffered a trauma to his head when he was eighteen months old. He was checked by a GP and they said all was fine.

However, when Blake started preschool and his mum noticed the right side of his head looked a little different, her the GP brushed it aside.

By the time he reached 7 Fiona was extremely concerned as there was obvious moulding in the same area so after visiting different GPs and paediatricians, she eventually ended up at Westmead Hospital in Sydney where they diagnosed a Grade III right middle cranial fossa Arachnoid Cyst. It is shown to be quite large after an MRI measuring 97x83x89mm.  

The symptoms he has is nausea and headaches and a right sided divergent squint, however once again the specialists said he would be fine and Fiona trusted their opinion as they are medical professionals.

At 16 and his current school  picked up he could only follow one direction at a time, he has problems expressing language and understanding it, he seems to have no memory as he daily asks about his showering routine and what time he catches the bus in the morning (he has been catching the same bus for 2 years) he has some unusual behaviours and is treated as an outcast with not one friend and does not like to leave the house, Fiona says this is breaking her heart.

He is anxious to the point of twisting and pulling his hair out and depressed and no one seems to listen to my concerns she says.

He can’t participate in many activities as one knock to the right side of his head could make the cyst burst, he often gets sent home sick with nausea and headaches from school so his education is suffering.

The moulding is quite prominent on the right side so he gets treated like a leper but he is one amazing artist and a wonderful young man with a heart of gold that his mum is so proud of.

The psychologists are putting it down to ASD but Fiona has her doubts that this is the initial cause.

Now Blake is 17 he likes to wear his hair long as this helps to cover the moulding on the side of his face which is being pushed out from the pressure of his Arachnoid Cyst. It is very cruel and sad that he has been ridiculed because of this from this condition. He is growing into a very good-looking young adult.

In her heart Fiona honestly believes his Arachnoid Cyst is the initial contributing factor but the neurosurgeons at Westmead just keep saying he’s fine.

He has been undergoing yearly MRIs and check-ups and every second year he goes to the ophthalmologist to check the pressure behind his eyes and they are always healthy.

Blakes latest MRI is reading that it is stable but there is compromise to the right lateral ventricle.

Fiona is now looking for a second opinion and will be seeing a new neurosurgeon she hasn’t seen before, we are crossing our fingers and praying that this neurosurgeon will be able to help Blake.

Side note: Blake is extremely talented in drawing and likes to create different characters.  One of his characters is on our Kids page as he has won a prize in our Kids Art Competition. He has just been accepted to do visual arts at Tafe in Newcastle. We hope you really enjoy this course, Blake!