Michael's initial symptoms was a buzzing in his ears, alongside nausea and sickness. The doctors at the time said that due to his age he would require a scan. The initial scan shown a “nodule” on the back of his head and was of little concern. It was sent to the Walton centre to analyse and they found it to be a risk factor. On the 17th of July, it was then diagnosed as a Hemangioblastoma, this is a vascular tumour that can occur in the brain or brain stem. It is very rare and only accounts for about 2% of brain tumours. Just prior to his surgery Michael started to experience severe headaches which was explained to him as the final symptom prior to potential death, if intervention did not occur, possibly from a hemorrhage or stroke, this indicated that surgery was now an imminent need.

Following his diagnosis, Michael was very proactive in trying to protect his friends and family from the full details of his condition as he didn’t want to upset people. Michael was told that surgery was necessary for the removal of the tumour. The scans shown that the tumour was attached to his brain stem and thus the surgery would be very invasive. The risks were explained to Michael and he was subject to the understanding that his future prognosis was, that he would use a short-term ventilator, need physio and potentially have permanent weakness on one side of his body. 90% of people who have have this operation do exhibit these levels of recovery. However, Michael was extremely unlucky and his recovery has been somewhat diminished. This was due to the brain stem undergoing some significant trauma during the surgery process.

The date of Michael's surgery was the 18th September 2018, he was in surgery for over 16 hours. Following the surgery, he went immediately to intensive care, they initially thought he could possibly return to his hospital ward. Michael was in intensive care from September 2018, all the way until February 2020. After the surgery, his family was informed was that 95% of the tumour was removed, and that there was a potential chance of the remaining 5% re-growing. Initially after surgery Michael began to show some signs of recovery, regaining some function in his arms and legs. He was also able to communicate very little, but could nod and shake his head slightly. However, at this point there was more complications, which started in November with Hydrocephalus, this involves an abnormal build-up of fluid within the brain. They informed his family that Michael had always had hydrocephalus however this had gone undiagnosed for the duration of his life. When this fluid build-up occurred Michael became fully numb, which progressed to him becoming paralyzed, his ears was also constantly ringing, alongside being close to losing his vision. This was treated by fitting shunts and drains which then caused excessive draining, resulting in severe seizures. During this time Michael was involved in over 6 invasive operations on his head. At one point he had his final operation in which we were informed the chances of him surviving it was very slim. This was a very challenging night for Michael's friends and family.

Upon the outcome of the final surgery that Michael undergone, Michael was left with very serve and likely permanent symptoms. Over the past year Michael has improved marginally in some areas, however his current challenges are as follows. Michael is fully ventilated with a Tracheostomy, this is 24 hours a day, Michael can come off for around one hour per day, which is just for a safety net in case the ventilator was to break, to allow time for repair or a new fitting. Alongside this the use of the ventilator significantly lowers his life expectancy, in addition to preventing him being be able to speak, drink or eat food. As a result of the surgery Michael can also not close his eyes due to him developing Bells palsy. This has caused issues with his vision, alongside ulcers in his eyes. It also causes a weakness and lack of movement on both sides of his face. Michael is unable to create facial expressions, express emotion, or close and move his mouth in anyway. One of Michael's most challenging outcomes is the loss of function and strength in his entire body, he is unable to stand up, or walk in anyway. Alongside this Michael was always left-handed, and unfortunately his left side of his body was affected much worse, causing him to now need to use high right hand for the limited function he currently has. Michael can still wave as seen in the picture. The future prospects of this improving are very slim, due to the weakness caused by the surgery and subsequent muscle loss from his time in intensive care. Michael’s rehabilitation causes him to become exhausted, but he is committed to maximally improving his quality of life as much as he can.

Michael is currently in an intensive rehabilitation care home. When communicating with Michael there are various challenges. We currently use a spell board, where we read out a colour, and each colour has 6 letters assigned to it. Michael will confirm the colour with a nod, and we will then read out the corresponding six letters to get the letter he wants to use to spell. This is a very long and tedious process for Michael, even though he’s memorised the spell board! It often makes him demotivated to engage in any conversation, due to how difficult and time consuming it is for him to write basic sentences.

One thing that’s worth noting with Michael is that his cognitive functions are all still fully active. Michael mentally is still the same person that went into that surgery, he asks questions which demonstrate his intelligence, understanding and care. He even shows a sense of humour and spells words which most of us couldn’t spell at the best of times! We want to purchase the eye gaze technology in order to finally give him back a voice, allowing him to communicate and express himself again. In addition to this it will help greatly with his daily life as well, as he will have access to entertainment and be able to make his own choices. The communication device we are aiming at purchasing can be seen here: Eye gaze communication device

Prior to surgery Michael has always had a loving family, who supported him as best they can, alongside a solid support structure from his friends and work colleagues. Michael was also married prior to his surgery, and unfortunately is now separated. Michael was a university lecturer teaching Psychology at the Manchester Metropolitan University, and was very close to completing his PHD. You can see more details of Michael on the newspaper article which was published about him: Liverpool Echo Article

His overall goal is to get out of the home where he is, and to regain as much of his independence and privacy as physically possible. I can speak personally that seeing the efforts Mikes family have made, whilst aiming towards this has been remarkable. His parents have sold their family home, in order to buy a property for Mike to move into and are currently pulling out all the stops adapting and developing it to finally get him back home. You can follow the journey of their development on their Instagram page:

https://www.instagram.com/michaels_journeytohome/

Any extra money beyond our initial goal for the communication device, will be put towards the development of Michael's new home ensuring he has all the devices and features needed to make his life easier. They will also keep posting with updates to show how they are working towards this goal. Thank you for any help you all can provide for Michael.