Paul’s Story

Description of Injury Event and Initial Treatment:
I survived 5 brain haemorrhages in December 1992 before getting a scan and then life saving brain surgery to remove a colloid cyst from the third ventricle, on the top of my spine, in the middle of my brain. 

Initial diagnosis in the NHS was very poor (7 trips to A&E all with misdiagnosis and no brain scan being offered).  However, I received excellent treatment once a scan and diagnosis had taken place).

Initially my skull was drilled to relieve the inter-cranial pressure, all whilst remaining conscious.  This was followed by 12 hours of surgery to remove the bulk of the cyst, but left me with a residual cyst and drug controlled epilepsy.  A second operation was required 6 years later to remove scar tissue that may have been identified as probably causing the seizure. 

I remain on drugs to control the epilepsy today.

Where treatment took place:
Hope Hospital, Manchester www.hopehospital.com/
They also have an amazing charity linked to the hospital providing support to areas which are left as gaps within the NHS.  www.basiccharity.org.uk
They have supported me emotionally in the early days and then to get back into full time work with the support of Access to Work.
What (if any) Specific Procedures Undertaken:
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Removal of the white mass (cyst) by making a hole through the skull and brain tissue to access it.  If it seen as a very difficult operation and as whichever way you go to access it, it’s in the middle of the brain/skull and so brain tissue has to be carefully navigated through to get to the cyst.

How did this make you feel?
Lucky to be alive!
Special.  I could not understand why so many doctors wanted to talk to me and ask about the symptoms.  It turns out that my condition is normally detected in a post mortem and so doctors don’t get to talk to patients about it.
Tired.  It is a known side effect of the type of surgery I have had.  Your brain uses about a 1/3 of your energy to process information.  When you have had surgery like this and tissue damage, your brain rewires itself.  However, it still processes on the old route and now the new route to, thus using up to twice the normally energy, ie 2/3 of your energy.  I find this to more prevalent when I am processing new information, rather than carrying out day to day tasks that do not require the same thought processing.
Rehabilitation:
Initial:
Unfortunately, after successful surgery, I am left with a painful left leg, likely to have been caused by a lumber puncture needle was bent whilst testing for meningitis.  I have had physiotherapy on my leg, insoles in my shoes, both had limited success.  I then found acupuncture and this proved much more successful and has helped me reduce my co-dydramol intake from 8 a day to 4 a day.
Ongoing:
Tiredness is now a big part of my life.  I have to take power naps to let my brain recover.  Sometimes I feel too tired to drive home from work and will take a power nap on the car park before driving, so that I am safe for me and other road users.
What did ‘helpful help’ look like? And why do you feel it was helpful?
They didn’t tell you what to do.  They asked what they could do to help you and then delivered on it. 
What did ‘unhelpful help’ look like? Why do you think it was unhelpful?
We have all heard it “I know what you are going through”

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