diary of events before, during and after

Please note : this next section is scary so please be aware if anyone has or knows anyone that has a brain AVM we don’t want to scare you, but we need this story to be told.Amy Ashton versus addenbrooksBrain bleed and removal of avm plus infection caused by foreign body and second operation needed. Total stay in hospital was 26 days.30/10/2012

Admitted to A &E bury st Edmunds via ambulance with suspected brain bleed.
Later that same day admitted to addenbrooks ward A4

• 31/10/2012- Was given a ageagram, Amy was is a lot of pain and discomfort and begged them to stop… Could not understand why they would not or why she was in so much pain.. When the procedure had finished – the doctor gave Amy a piece of paper with the letters AVM written on it.. And was told this is what you have and to google it due to the fact the doctors are neurosurgeons and did not know a lot about avm.
• 2/11/2012-Amy was in a single room, by herself, for 3 days now, and still had not been told what was happening, or what was actually wrong.. No nurses or doctors would tell her or family.. Amy needed help with cigarettes, ie; patches and to stop the anxiety, one nurse shouted at Amy because she asked, then the doctor told Amy in a forcefully manner, here’s your patches and through them at Amy’s bed desk.
• 5/11/2012 -Amy was finally told by a nurse what an AVM was and how serious it was.. Only due to the anxiety and pain that Amy was in… As she was made bed ridden for several days.
• 6/11/2012 -Finally the doctor came and told Amy she could go home, just like that, and it was said in a very calm full way… The doctor also stated that Amy will be back within a week to have the AVM removed, and you will get a call from the surgeons secretary to confirm time and date.
• 13/11/12 - Amy called the secretary as she had not heard anything from her, Amy was told that what she has is very serious and needs two surgeons to do her operation, and that the secretary had to email them both. And she told Amy that she will be in for op this side of Christmas.
• 5/12/12 - Amy received a call from secretary asking she would be available for op over the christmas period, if not the op will be done in February.. As Amy has been getting more more anxious as she is a walking time bomb waiting to go off and she could die at and stage, she said yes she is available over Xmas.
• 1/2/2013 - After making several calls to addenbrooks regarding the life saving surgery she was ment to have befor now, Amy received a letter asking for her come in for a pre assessment for surgery for the 18/2/2013 and for Amy to have surgury on the 6/03/13 And be due in at 7am.
• 5/03/13 - 6pm Amy received a call from the surgeons secretary stating the op has been cancelled.. No reasons why. Both Amy and I and also our family had mentally prepared ourselves for the operation to take place, we also arranged babysitters, childminders and staff for work and everything else needed for when Amy was to go to hospital. It was like a mental torture that had driven through us like a 50 tonn truck.
• 7/3/2012 - Amy was given yet another date for surgery for the 5/04/2013.. We did not have our hope up on this one happening. But Amy was told to come to the ward the evening before and you will deffinetly be ready for opporation.
• 4/04/2013 - Amy arrives at addenbrooks in the evening and admitted on ward A4
• 5/4/2013 - Amy’s opporation for the removal of the avm had been a success.
  I sat with Amy when she came back to the ward, Amy had woken and vomiting, I called for the nurse that was less than 3 ft away from us, her reply was “I can’t you need to press the buzzer “. Amy needed assistance so I pressed that buzzer for 60 mins continuously and no one came the nurse that sat less then 3 ft away still would not assist.. But finally a nurse came. Amy and Helen (Amy’s mum) 5 hours after Avm removal.
• 11/4/2013 - Amy was released from hospital. She was given paracetamol for the pain and a doctors letter… I asked at this point about after care for Amy and her wound.. I was told to carry on as normal the back of Amy’s head 4 days after Avm removal
• 15/04/2013 - Amy had to go to her gp to have stitches removed.. To which they hesitated and took a couple out and said come back in Wednesday to have the rest taken out..
  At this stage amy was feeling that the wound was itchy and painful, but Amy did not know if this was just normal.
• 17/04/2013 - Returned back to gp and the gp did not know what to do as there was one stitch that was not wanting to come out, So he tried to contact addenbrooks
• 18/04/2013 - Amy had woken in the morning in a lot of pain in her head, shoulder and neck, and her nymph glad was very swollen, I told Amy that it sounds like an infection, so I called addenbrooks wards a4 and a3 also the surgeons secretary and each of then passed me to each other. I then called a&e in bury st Edmunds they told me to bring Amy in to hospital. The doctors there done several tests on Amy to confirm that was an infection and also leaking spinal fluid. At 11am they called addenbrooks to get permissions to treat Amy or to get Amy back into addenbrooks to get treated there.
  arfter several attempts of trying to get addenbrooks to respond , Amy then was told at 8pm to make her own way up to addenbrooks. To which she did.
  9.10pm Amy was admitted to A4 ward at addenbrooks and told to wait on the bed till you have been seen by a doctor… After waiting there for several hours without seeing a nurse or a doctor Amy went of her bed to find out what is happening, she was told the doctor will be here soon- with anxiety now kicking in Amy is at this point thinking she was going to die.. She has an infection on her wound, leaking spinal fluid and is feeling hot, and in loads of pain.. Amy begged me to get her back to bury st Edmunds so she would not die. 2.30 am an on call doctor comes to see Amy and told her that the wound will need to be cleaned up and operated on again. But can not do anything till she has been seen by the surgeon that done the first operation.picture; can see the infection starting to show on the outside of the wound
• 22/04/2013 - As Amy has been waiting all weekend with no response from any doctor or nurses, the surgeon turns up and take one look at amys, now infected wound and says ” you done this with your smoking ” and then walked away.
  Amy was infuriated by the actions of this doctor.. She called me to help her, I did that by making three phone calls, 1′ to her own gp 2, to her surgeons secretary and the third to a solicitor. Stating that Amy has one hour to get treated and seen too. To which this happened. Amy was given a treatment of anti biotics for the duration of her stayAnd this happened till she was released home on the first of may.
• 3/05/2013 - Amy was rushed to A & E in bury st Edmunds, later to be rushed over back to addenbrooks and had an emerancy operation to have the wound cleaned up and have the foreign body’s removed that was causing the irritation and infection.picture; after second operation to remove foreign body.
• 10/5/2013 - Amy was allowed to come home after a debriefing of what to do after an operation and what to look out for, and what to expect afterward. She was also told at his point that she may have to have more surgery if it does not heel properly.
• 16/5/2013 - Back to addenbrooks for the removal of the stitches and will find out if another op is needed.. Stitches had been removed.. And left one in, But still had to have 3 put back in as wound has not heeled properly, return back to addenbrooks in two weeks to have new stitches removed and discuss possible plastic surgery.
• 30/5/2013 - returned back to addenbrooks to have stitches removed and now have been told all is ok.
• 1/06/2013 - an appointment made and arranged to see the doctor that performed the operation of the removal of the AVM, the reason for the appointment was for an assessment of how things have been and wether further surgery is required.
  Unfortunately the doctor was busy with a new patients and a nurse was sent to do the consultation, and again unfortunately she was unable to answer any questions regarding the first operation and the second, and why after a few months, balance, co-ordination and vertigo is still occurring.. And why a mental state of anxiety is normal.
  But yet the nurse signed her off.
  Amy now believes that doctor that performed the removal of the AVM from the brain done his job by cutting as many costs to save his department in the NHS money…his post care and after care was in a way he and the board of addenbrooks and the NHS should be ashamed.. It’s disgusting how the whole procedure was performed with the lack of faith and trust left a very bitter taste.We actually pray for anyone that ever has a brain AVM and hope the whole world prays harder if there are admitted to this doctors care.This has been a long journey, and we still have a long way to go before all is ok… And there is a few long time and life side effects but Amy will overcome them all.
  But the out-come is, Amy beat the brain AVM the strength, the courage, the confidence that Amy has shown through out, has been AMAZING. 

Look out for my next post to see what has happened in the past few years