Now I find myself having to write my story and reach out to friends, colleagues and the greater universe as I am in need of support as I prepare for brain surgery on the 6th Dec 2018.
I am a single Mum with a little boy who is just 2 years old. Unfortunately, my partner passed away just a few weeks before our son Madin was born. The last couple of years have been tough but nowhere near as tough as the last 5 months as I face life-threatening health issues and prepare for brain surgery.
Here is a little of my story: In August 2018, I presented to Emergency with stroke symptoms. I was referred to the Stroke Clinic at Royal North Shore Hospital, Sydney. During the consultation with the Professor and while looking at my brain scans there was an incidental find of three intracranial (brain) aneurysms.
Left side: 1 x 8mm and 1 x 4mm. Right side: 1 x 2mm.
Anything over 7mm is deemed at high risk of rupture and surgery is recommended. There are many causes for aneurysms and mine could be hereditary as my Great Grandfather passed away from a cerebral hemorrhage.
Aneurysms are present in about 2% or more of the adult population and multiple aneurysms occur in 10% of these. A cerebral aneurysm is caused by a weakness in the wall of the brain artery. They are more common in women than in men. * Source: Brain Foundation Australia
Since the first hospital visit, I have presented to Emergency another two times with stroke symptoms. On one of those occasions, I was admitted to the stroke ward for several days and I was diagnosed with a neurological disorder, on top of the aneurysm diagnosis.
I have had some other incidental finds and I am currently experiencing a very high white blood cell count and platelets that have been rising now for 2 months. I am waiting to be given an appointment with a haematologist and oncologist at RNSH. I sadly cannot afford to see a private specialist.
I have opted for a craniotomy and clipping for my 8mm aneurysm. The clipping option is usually favoured in younger patients as it gives a more permanent solution and a longer life expectancy. For those of you who don't know what this is, here is a little explanation (I hope it doesn't make you queasy).
An incision will be made behind my hairline, then a section of the skull bone is removed. This gives access to the lining over the brain. The lining is then opened to expose the brain surface. Under a microscope, the aneurysm is carefully separated from the normal blood vessels and the brain. The metal clip (like a clothes peg) is attached to the neck of an aneurysm. This keeps blood from entering the aneurysm. As a result, future bleeding is prevented, and the brain tissue is protected from further damage.
The bone plate will be securely put back into place using thin metal plates and screws and the wound is closed. The metal plates and the clip will remain in my head permanently although the bone plate will heal over 6-12 months.
They can only operate on one aneurysm at a time as it would increase the surgery risks, which are:
* Loss of sight in my left eye.
* As language sits on the left-hand side of the brain, there is a risk of loss of language – this means speaking, reading, writing, typing. Lastly, temporary loss of memory.
The risk of not having the surgery is much higher, as the neurosurgeon’s words to me were that a rupture would be catastrophic for me. I have been on a waitlist for just over 60 days and I received my surgery date today 6/11. The operation will be on the 6th Dec 2018, which is just a month away, This time will fly by and before I know it, it will be time to face the fear of such a serious operation.
My recovery will be long, if there are no complications during the surgery or after the surgery, my recovery will hopefully look similar to this:
· 1 week stay in hospital (ICU and stroke ward). I will be released from the hospital just 2 weeks before Christmas.
· 6 weeks of bed rest, where I will need help to look after my son, and myself. I will need to have rehab and I will have Neuro Fatigue as my brain recovers from the surgery. This can be ongoing for up to a year.
· At 3 months, I can hopefully look for some part-time work, ideally 1 x 4-hour days for 6 weeks and build up to 2 half days and so on.
· Within 6 months to 1 year I should be fully recovered and working full time again.
Unfortunately, I am not out of the woods with this one brain surgery as I have three aneurysms and I will have to carefully watch the two that remain. This will require some lifestyle changes to reduce stress and situations that could increase rupture risk. I will be looking for treatments that could perhaps help me shrink the two that remain. It is rare, but it can happen. I really do not want to face brain surgery another two times. (Aneurysms grow on average at 1mm a year).
For those of you that know me, you know I live my life to the fullest. I go after my dreams and I am full of love for everyone. I am warm and friendly, and I am always ready to help others. I can be cheeky and love to have a good laugh. I always look for the positives in situations and I am a strong, independent woman. I can say with my hand on my heart that the finding of these aneurysm has hit me hard and I have been on an emotional rollercoaster.
My biggest achievement in life is my son Madin. I never thought that I would get the chance to be a Mum and in my mid 40’s the universe gifted me with the most beautiful little boy. He is my life, he is my power, he is my world and I cannot leave him. He is just 2 years old and I would give and try anything to ensure that I am healthy and able to be the strong, healthy Mumma he deserves. The love I have for Madin is beyond belief and seeing Madin’s little face every day is what keeps me going.
I am reaching out on this platform to ask for help as I am not able to work right now or for some time in the near future. Knowing that I could potentially reduce some of the immense financial pressure I am facing will help to reduce high levels of stress, which can potentially increase rupture risk. To have some financial pressure released will give me the chance to fully focus on my upcoming surgery and my recovery. It will give myself and Madin the support we both need to get through this.
Anything you can spare to help us will be gratefully received. The donations will come directly to myself and Madin and will help me cover medical and daily living expenses.
As I have just been given my surgery date and my surgery is now only a month away, the need is quite timely. I would ideally like to get some very important things into place for myself and Madin before I am not able to do some of those things myself.
Thank you for taking the time to read my story and for any support you can contribute either financial or other, I will certainly pay it forward in the future and I am truly grateful.
Jules and Madin xxx
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