Providing practical and emotional
support for all people affected
by brain haemorrhage

      Denny's Story

       

      I was recently presented with a box of ‘Celebration’ chocolates on the tenth anniversary of my brain haemorrhage. It was a surprisingly poignant moment for reasons other than the fact that somebody had spared no expense marking the occasion.  I was touched because the applause I received came from a group of almost fifty people at the end of a meeting arranged for those who had recently survived a brain haemorrhage.  On this particular evening, I was representing the Brain Haemorrhage Support Group, (BHSG), hoping that our work would help their recovery, following what is for many a life changing event.

       

      Having a brain haemorrhage was certainly a life changing event for me. Ten years earlier I was a very fit and healthy mum of two young boys aged seven and twelve: happily married with a career as an I.T. Manager. Life was good. There was no way I could have anticipated the traumatic events that would follow a series of bleeds from an aneurysm in my brain. By all accounts my traumatic experience was far from typical, as was my seemingly interminable recovery.

       

      The Walton Centre saved my life on four occasions. Initial complications had prevented an earlier diagnosis and after an emergency ambulance trip, I was fortunate to have just arrived back on a ward (Sherrington) when my major bleed occurred. I received some instant medical attention and had an operation during which a drain was fitted to ease growing pressure on my brain. Some days later it was decided that an aneurysm they had discovered couldn’t be ‘coiled’. Two ‘clips’ were fitted following a craniotomy and some challenging surgery.  A tracheotomy and a nasal feeding tube were necessary additions to my discomfort and a litany of life threatening problems followed. A third neurosurgical operation reversed my severe deterioration; a permanent shunt to drain fluid from the ventricles in my brain was the final life saving event before my four month confinement was nearing its end.

       

      My unsuspecting family (who supported me throughout), didn’t know that my husband Paul had secretly negotiated with staff to arrange a ‘trial weekend’ at home for me, to mark a special occasion. He and my sons, Adam and Josh, propped me up outside my parent’s house holding a sign saying ‘Happy 70th Birthday, Dad’. My Dad said it was the best present he’d ever had.

       

      I was discharged the following week, fortunately with visiting rehabilitation support. The initial euphoria of surviving the ordeal dissipated as the enormity of the challenge ahead of me became all too apparent. The brain damage to my cerebellum affecting my balance and co-ordination proved, as anticipated, to be a permanent problem. Although I could walk, I needed a wheelchair for several months and my weight was down to six stones. Prolonged speech therapy was necessary to retrain my voice to an acceptable level, as I was left with a paralysed vocal chord as well as some difficulty swallowing. Even more distressing was my double vision. Individually, my eyes functioned, but my brain took eighteen months to relearn how to fuse two separate images into one. For our children’s sake, we made light of the fact that I resembled a pirate while wearing my new eye patch, but the double vision and the balance problems were a nightmare combination. Debilitating fatigue and other physical problems added to this cruel mix; yet it was the psychological trauma and inescapable fear of having another bleed that overwhelmed my existence for a prolonged period.

       

      Understandably, I initially resented hearing the comment ‘You’re very lucky’! Gradually, I accepted that the neurosurgeons were right to say such a thing. Frightening brain haemorrhage survival rate statistics would confirm just how lucky I really was. Every aspect my life, physically, emotionally, psychologically, socially and financially, had been turned upside down. The fact that I had to be medically retired from my job because of my ‘deficits’ was heartbreaking. Yet this and the fact that my husband gave up half his home based business to care for me became a little easier to accept, considering the possible alternative outcome.

       

      Thankfully, ten years on, I do consider myself very lucky to have survived to see my boys grow into young men and to have such a supportive husband. Despite our countless difficulties, the Walton Centre made it possible for us to stay together as a family. The BHSG see many families simply trying to achieve the same thing while dealing with life after a brain haemorrhage.  They all have their own stories to tell.

       

      It’s amazing that our support group sometimes meet people who are back on their feet within a matter of days of having had brain surgery. Advances in technology have enhanced the surgeon’s skills to the point where the coils fitted to prevent aneurismal bleeds allow some people to get on with their lives without even a visible scar to show. Ironically, the undoubtedly laudable life saving achievements of the neurosurgeons may distract from the multi layered difficulties many survivors still face after discharge from hospital.

       

      With the support of a small number of health professionals from the Walton Centre the BHSG have worked hard since 2003 to build upon the growing awareness of the difficulties many people face after surviving a brain haemorrhage. There has been some notable progress, but the ‘system’ needs to fully understand and acknowledge that ‘the job is not done’ when the patient is discharged from hospital. Regularly at BHSG meetings, these often vulnerable people express their gratitude to the surgeons, yet ultimately often feel let down by a system that is seemingly ignorant of their long term difficulties. In particular, the desperate need for additional psychological support is constantly identified.

       

      If the ‘system’ can now acknowledge and respond  to the needs of brain haemorrhage survivors after hospital discharge then our Brain Haemorrhage Support Group members  really will have something to applaud and to celebrate.