Dee's fight against chiari
Donation protected
This is me, and this is my story.
I am 36 years old, a mum, an aunt, sister, cousin, friend, co-worker and daughter.
Nearly four years ago I was diagnosed with a rare brain condition - chiari malformation. Many doctors haven't heard of this, much less the general public.
The basic gist of it is, the back of my skull is too small which puts pressure on the back of the brain - the cerebellum. This forces the cerebellum down and into the spinal canal, forming a 'plug' of sorts. This stops the cerebrospinal spinal fluid (CSF) from flowing down around the spine and around the brain. When this happens, you get disrupted flow or even a complete blockage. This causes many symptoms - headaches (and I use this term very loosely - it's debilitating pain in the back of the head), weird aches and pains, desensitisation of nerves, hypersensitive nerves, tiredness, sleep apnoea, nausea/vomiting, aching eyeballs, tremors, sensitivities to all senses, tinnitus....this is what I experienced, but there is so much more.
I had my first decompression surgery in June 2014. This involved removing a piece of my skull about the size of a 50c piece, the 1st vertebra being shaved, and lining of my brain (the dura) being opened and a patch placed in - all to expand the space to allow CSF to flow through the area. All went well until 5 weeks after surgery, where I developed a near fatal case of hydrocephalus - too much CSF in the brain which couldn't drain out. This was due to a build up of scar tissue, blocking the flow of CSF at the site of my surgery. I had emergency surgery to re-decompress the area and remove scar tissue. It was touch and go for awhile and I spent quite a bit of time in ICU to recover.
After this, the surgeries get a bit blurred. I developed a CSF leak in the dura patch a week after my second surgery, requiring another surgery to repair it. A week later, I again had a surgery to place a VP shunt to drain excess fluid from my brain to my belly area to be reabsorbed by my body. I spent a little over 3 weeks in hospital during this time. It was discovered I had an extreme high CSF pressure situation in my brain.
To date, I have had 10 surgeries, and many complications including infections, subdural haematomas, pneumonia, collapsed lung and pleural effusion (lung filling with fluid). These were due to dura leaks, CSF pressure/shunt related problems and shunt revisions.
During this time, I was unable to work for 18 months. Relationships suffered. I lost my job. My own confidence took a hit. My anxiety levels increased. My pain levels increased. I lost some friends.
During the last 18 months I've had only 1 surgery, to now clamp the shunt, rendering it useless. Because it was now overdraining, causing slit ventricle syndrome. That was December last year.
I I have since found a job I love, with people I adore. It is full on and crazy and hectic, but I love it. But then my symptoms started increasing, both in intensity and length of time the 'flares' lasted.
I sought the the help of the only Chiari specialist in Australia, an interstate trip which has paid off. After an in depth MRI, it was found that I again have some more complications. The dura patch is again leaking, but has also attached to the cerebellum. There should be space through there for CSF to circulate, but there's nothing. It was also found that my brain stem is now attached to the dura patch with scar tissue. Again, this is causing CSF to pool, rather than flow. The concern is now the higher risk of developing hydrocephalus again.
I have surgery number 11 scheduled for 2 weeks time, with this specialist in Sydney. It is a massive surgery, in which I'll be decompressed (again), scar tissue and dura patch will be removed. A new patch will be harvested from my own tissue and sewn in place. Then, a metal plate will be placed between my cerebellum and the patch to maintain the CSF flow indefinitely. This surgery has had great success in helping people like me, who have had many complications with little success.
But this comes at an extreme cost. Along with my existing medical bills, there is now a $15 000+ surgery. Anaesthetist fees. Rehab fees. Imaging fees. Flights. Accommodation. Time off work.
This is is how it will help both myself and my family. It will take some pressure off paying these bills. It will help my recovery, not stressing so much about paying for a surgery that will positively change my life. It will help my anxiety and stress levels. It will help my family. It will help me.
This is my last chance to have a 'normal' life, and any donations will be thankfully received, aiding in helping me to achieve and maintain that normal life I so desire.
More information on chiari can be found here:
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
http://www.chiariaustralia.com/
I am 36 years old, a mum, an aunt, sister, cousin, friend, co-worker and daughter.
Nearly four years ago I was diagnosed with a rare brain condition - chiari malformation. Many doctors haven't heard of this, much less the general public.
The basic gist of it is, the back of my skull is too small which puts pressure on the back of the brain - the cerebellum. This forces the cerebellum down and into the spinal canal, forming a 'plug' of sorts. This stops the cerebrospinal spinal fluid (CSF) from flowing down around the spine and around the brain. When this happens, you get disrupted flow or even a complete blockage. This causes many symptoms - headaches (and I use this term very loosely - it's debilitating pain in the back of the head), weird aches and pains, desensitisation of nerves, hypersensitive nerves, tiredness, sleep apnoea, nausea/vomiting, aching eyeballs, tremors, sensitivities to all senses, tinnitus....this is what I experienced, but there is so much more.
I had my first decompression surgery in June 2014. This involved removing a piece of my skull about the size of a 50c piece, the 1st vertebra being shaved, and lining of my brain (the dura) being opened and a patch placed in - all to expand the space to allow CSF to flow through the area. All went well until 5 weeks after surgery, where I developed a near fatal case of hydrocephalus - too much CSF in the brain which couldn't drain out. This was due to a build up of scar tissue, blocking the flow of CSF at the site of my surgery. I had emergency surgery to re-decompress the area and remove scar tissue. It was touch and go for awhile and I spent quite a bit of time in ICU to recover.
After this, the surgeries get a bit blurred. I developed a CSF leak in the dura patch a week after my second surgery, requiring another surgery to repair it. A week later, I again had a surgery to place a VP shunt to drain excess fluid from my brain to my belly area to be reabsorbed by my body. I spent a little over 3 weeks in hospital during this time. It was discovered I had an extreme high CSF pressure situation in my brain.
To date, I have had 10 surgeries, and many complications including infections, subdural haematomas, pneumonia, collapsed lung and pleural effusion (lung filling with fluid). These were due to dura leaks, CSF pressure/shunt related problems and shunt revisions.
During this time, I was unable to work for 18 months. Relationships suffered. I lost my job. My own confidence took a hit. My anxiety levels increased. My pain levels increased. I lost some friends.
During the last 18 months I've had only 1 surgery, to now clamp the shunt, rendering it useless. Because it was now overdraining, causing slit ventricle syndrome. That was December last year.
I I have since found a job I love, with people I adore. It is full on and crazy and hectic, but I love it. But then my symptoms started increasing, both in intensity and length of time the 'flares' lasted.
I sought the the help of the only Chiari specialist in Australia, an interstate trip which has paid off. After an in depth MRI, it was found that I again have some more complications. The dura patch is again leaking, but has also attached to the cerebellum. There should be space through there for CSF to circulate, but there's nothing. It was also found that my brain stem is now attached to the dura patch with scar tissue. Again, this is causing CSF to pool, rather than flow. The concern is now the higher risk of developing hydrocephalus again.
I have surgery number 11 scheduled for 2 weeks time, with this specialist in Sydney. It is a massive surgery, in which I'll be decompressed (again), scar tissue and dura patch will be removed. A new patch will be harvested from my own tissue and sewn in place. Then, a metal plate will be placed between my cerebellum and the patch to maintain the CSF flow indefinitely. This surgery has had great success in helping people like me, who have had many complications with little success.
But this comes at an extreme cost. Along with my existing medical bills, there is now a $15 000+ surgery. Anaesthetist fees. Rehab fees. Imaging fees. Flights. Accommodation. Time off work.
This is is how it will help both myself and my family. It will take some pressure off paying these bills. It will help my recovery, not stressing so much about paying for a surgery that will positively change my life. It will help my anxiety and stress levels. It will help my family. It will help me.
This is my last chance to have a 'normal' life, and any donations will be thankfully received, aiding in helping me to achieve and maintain that normal life I so desire.
More information on chiari can be found here:
http://www.ninds.nih.gov/disorders/chiari/detail_chiari.htm
http://www.chiariaustralia.com/
Organizer
Dee Young
Organizer
Seventeen Mile Rocks, QLD