Ok so this is going to be a blog that is somewhat very personal, but I thought it was worth sharing none the less.
A lot of people normally see a side of me, well a face that I put on, a happy one, but i am far from happy. Why you ask, well its because of my disability which I was born with and no before anyone asks, I don’t blame my parents.
I have been living with a lot of pain over the last couple of years. to explain in short I have Spina Bifida, however I have a rare case that is not common and the doctor have trouble trying to work out the best course of action as I have fatty/scar tissue wrapping around my spine causing all sorts of issues.
To explain more, I have had 4 back surgeries, one when i was 6 months old, then 4 and a half, 16 and 19 with the last one in 2003 having complications due to spinal fluid leakage in which it was advised by my previous neurosurgeon that another operation would not be a possibility because there is not enough skin to hold.
However in january this year, my new neurosurgeon has advised that he can operate and there are ways around/patches which can be used to stop spinal leakage from occurring, the only catch is that he is not able to guarantee if I will get better, stay the same or in fact get worse.
Well the problem is that with that fatty tissue, there is nerves running through such tissues and as they cut away the fatty tissue, they can cut or severely severe the nerves which could in fact lead to further problems. hence why the surgeon has stated it would be exploratory but they will try their best not to cause to much distress.
Now your probably even thinking why would I go ahead with the surgery when there are guarantees. Well that again is simple - I need to do something and try and see if it works or pays off. Yeah if it gets worse, it gets worse but it has to be better then what the current situation.
The current situation is that I am currently in Westmead Hospital since last Friday because of increased back[ain and complete weakness of my legs. Don’t get me wrong, I do use a wheelchair to get around in the community, but at home I generally use walking crutches or just hold on to things and try to walk.
I am over the pain right now and just want to see what may or may not happen if I have the surgery, the problem is the doctors are unable to do the surgery while I am in here which worries me a little.
To say the least the last 6 months or so have been so bad with back pain that, well I have wanted to do something which in all honesty would be a cowardly thing to do but when your living with so much pain it does become unbearable.
Yeah sure I am on pain medication but thats not really a long term viability. Something needs to be done and right now the only thing that could be at least some benefit if not no benefit at all is the surgery.
Again your wondering why I am telling you this and the truth is, I wanted to go, well pubic and say that if you are living with back pain or problems alike, then you certainly aren’t alone.
I just hope that things improve soon if not the wheels are put fully in motion for this surgery to happen because I am just over all this pain!!
I would like to note that I do have a wonderful support group. From my family (my mum, dad, and little brother) to my wonderful partner, Brett to various friends and relatives!! Without their support I know I could not have gotten through this or the last 6 months!!!
If you are looking to find out more about spina bifida, then please click on the links below -