On the 11th day of the 11th month 2003, a day after completing a relatively simple operation Anita suffered a post operative bleed that led to brain damage and changed her life forever.
Below is a brief summary of the period Anita was seriously ill, before she was admitted to the rehabilitation hospital. It’s not possible for this outline to reflect fully the daily onslaught of problems that she had to contend with over this time.
Anita suffered from a condition called trigeminal neuralgia, it’s an extremely painful medical condition that involved a sharp stabbing shock to the right facial nerve. The condition would come and go sporadically and could be treated with drugs. It started when she was 19 and after two rhizotomy operations it was time at the age of 38 to do something more serious. A procedure called microvascular decompression was offered which involved minor brain surgery, it had a risk of 100/1 of anything at all going wrong.
10/11/03: Anita has microvascular decompression surgery in Addenbrookes hospital (Cambridge). The procedure involved placing a small piece of Teflon in between a blood vessel and a nerve at the base of the brain. The fact that the two where found to be touching indicated the root of her problem. The operation was successful and a good prognosis for the future was given.
11/11/03: At 10am visiting time I turned up to find Anita being sick which is not unusual after operations. As soon as I got there she started to deteriorate, her speech began to get slurry and eventually she lost consciousness. At one point up I tried to get her to write something but it ended up as a scrawl. All she managed to convey was that she was getting feedback in her ears. She was taken down for a CT scan and as I paced around outside in the corridor I knew things weren’t looking good. Her brain showed swelling (in the left posterior fossa) and mild hydrocephalus so she was rushed to the operating theater, they needed to create an opening in her skull so that her brain could breathe. Apparently it’s the pressure that builds up in the brain that kills you.
They had to evacuate a post operation haematoma in the trigeminal nerve region close to the spine. They also inserted a frontal EVD drain which involves drilling a hole to insert a tube for ventricular drainage to control the fluid level in the brain. Later I realised this also resulted in another haematoma on the top front right of her head. The haematoma’s are basically bleeds/clots similar to having a stroke and this brain damage would be the source of her long term problems. Later that day I walked in to the Neurological Critical Care Unit to find her intubated (coma induced). She was on a life support machine and had a main line inserted into her heart.
18/11/03: Anita’s eyes opened but where unable to focus. She was able to squeeze my hand very lightly.
19/11/03: More CT scans show blood in ventricles. Head drain doesn’t work that well so the drain is removed. Later she tests positive for infection in the spinal fluid.
22/11/03: Surgery to re-insert the head drain so they can keep control of the infection spreading to the brain.
23/11/03: Tracheotomy operation to insert tube into her throat is completed. There is bleeding around the throat afterward.
25/11/03: Head drain fails so they need to do a lumber puncture so she can continue to be monitored and given anti-biotics. During the procedure she is placed on her side and Anita suffers a blocked tracheotomy. She looses oxygen for several minutes and suffers pneumothorax (collapsed lungs). It’s probably down to a loose piece of tissue and she needs chest drains inserted into both sides to help her breathe. The tracheotomy tube is removed during this crisis so her mouth is covered again with the life support tube.
27/11/03: Operation to re-insert the tracheotomy, she is taken off life support and able to breathe with a ventilator.
28 & 30/11/03: Chest drains removed.
28/11/03: She has a complex partial seizure (fit) and is given anti-convulsants from now on. Recurrence of meningitis infection.
4/12/03: Has second Tracheotomy operation to re-insert.
5/12/03: Brain scan shows no progress with the two blood clots, she is moved to the wards.
6/12/03: Developed eye and bladder infections to go with the one in her spinal fluid.
10/12/03: There has been a lot of vomiting and she has another lumber puncture.
11/12/03: She is now able to use a buzzer pressing once for yes and twice for no.
23/12/03: Operation to put a feeding peg into her stomach means that the the feeding tube that goes through the nose is removed.
3/01/04: 24 hour vomiting session which the doctors think is due to an imbalance of fluids in the brain. This is something that goes on for a few months when she is rolled onto her side.
7/01/04: The doctors try unsuccessfully to insert a main line into Anita and she looses consciousness. She has a CT scan and returns to the Neurological Critical Care Unit. Fortunately she wakes up as soon as she is admitted to the unit.
9/01/04: Operation to insert EVD head drain.
11/01/04: She is transferred back to the ward where she continues to be given anti-biotics straight into the head drain
14/01/04: Operation to re-insert EVD head drain again. She has also now developed a lung infection.
24/01/04: Someone leaves the head drain shut off for too long and Anita’s head swells right out where she has had the bone removed.
26/01/04: Lining of brain leakage requires surgery to repair it by taking skin from the leg (fascia lata harvest) and using it to thicken up the right mastoid area.
7/02/04: Surgery to remove head drain and to insert a shunt into the left side of the head. Her head swells badly after the operation and she seems to loose consciousness. Operation site needs further stitching.
14/02/04: Anita starts to be pushed in a wheelchair.
20/02/04: Constant infections in right eye lead to botox injection to help it close. It doesn’t work so a further one is given.
24/02/04: The tracheotomy is removed from her throat.
26/02/04: It’s Anita’s birthday, she has her first drink of water for 3 months.
10/03/04: She is moved to an isolation ward as she tests positive for MRSA in the right eye.
20/05/04: Operation to insert gold weight into the top eyelid to help it close and prevent the numerous infections she keeps getting.
25/05/04: Admitted to rehabilitation hospital Rayners Hedge in Aylesbury.
18/10/04: Plastic surgery on eye to increase the tension and raise lower lid.
17/02/05: Anita goes home permanently.
20/10/05: Develops an ulcer in the eye, eventually admitted to hospital.
27/10/05: Whilst in the eye ward she breaks her hip transferring with a small nurse.
18/11/05: Discharged from hospital, her vision is worse the ulcer causing permenant damage.
25/11/05: Botox injection into her eyelid to keep it closed.
2/12/05: Plastic surgeon tells her she can’t recover her smile but an operation on her face will help to balance things.
22/12/05: Anita takes an overdose.
02/05/06: Squint surgery to centralise her eye.
10/06/06: Anita refuses back surgery.
28/06/06: Plastic surgery to help her face and speech.