Six months ago Tiffany (not her real name) was happily driving her brand new motor car into the Hotel Normandie compound. "I was feeling good about my new car and drove into the compound with one hand on the wheel and the other hand resting on the armrest. I tried to move that hand from the rest to help me turn the wheel. Nothing doing, my hand refused to come up so I am like 'come on hand."
Instead of obeying her command, the hand just started to move into a curl by itself. Tiffany was scared. Realising that something was wrong, she moved into a parking slot and called her brother from the cell, trying at the same time, unsuccessfully, to attract the attention of the guards at the entrance to the car park. "Then I saw this car driving around to where I was parked and asked them to stop. The three men in the car stopped and stared. It was not until I told them I think I am getting a stroke that they came over to the car and realising it was serious called an ambulance emergency service." By this time her brother had arrived and immediately took her to the nursing home.
A compressed nerve was the diagnosis. The episode passed, her hand was normal again "but I kind of felt this was no compressed nerve." The next day Tiffany's doctor sent her straight to a neurosurgeon and an MRI Scan followed, which was traumatic as she suffers from claustrophobia and "it's like if you are in a coffin."
On entering the doctor's office for the results, his words were "girl look at what happened here, and I saw two holes on the chart, that is how a tumour manifests itself." Tiffany had not one but two benign brain tumours. The very practical 40-plus business manager enquired "what is the next step. I couldn't sit down, I just did not want to settle anywhere so walked up and down the doctor's office." It was the time of confusion with the nurses so he said "well you are going away." "How much time before I really need to go" she questioned. There should be about three to six months before more symptoms showed up.
"I went straight back to the office with the feeling that there was so much to clear up in the office, still figuring I have three to four weeks." Tiffany was wrong because by the time she returned to the office and was chatting with a staff member "this thing was coming on again, this time there was a movement which is hard to describe up my arms and my fingers started to fold in. This feeling was even worst and it was frightening as the discomfort was going through my whole system." It was back to the nursing home where luckily her neurosurgeon was doing surgery and immediately prescribed dilantin, the first drug for any kind of brain seizure or epilepsy.
From then the attacks became more frequent " so I had to get out of Trinidad."
At the hospital in Illinois, it was discovered that the tumours had been growing slowly and had now reached the point that they were pushing her brain out of position so that the brain was badly swollen.
Because the tumours were on two different sides of her brain, it was impossible to remove them during one operation. Scheduled surgery had to be delayed for two to three weeks as her surgeon himself got ill. But she was neither afraid nor disturbed for the first operation.
"The doctors themselves came for me, no nurse or orderly but those doing the surgery. I remember asking to let me know when they were going to put me under, but seems they forgot as the next thing I knew a nurse was changing my clothes." The surgery had taken six hours.
Tiffany was sitting up by the second day; her cap which she likens to a dripping pan was removed on the third day; and by the fourth day she was out of the Intensive Care Unit and starting physiotherapy. This tumour had affected the motor skills on the left side of her body.
"Even though I could not use my left side, I never lost feeling in it so that was a plus as from the earliest stages I always had total feeling. I started practising using my fingers and hands knowing the whole world was praying for me. There were times it was like lifting a 300- pound weight and finding my left leg as I really did not know where it was but there was fabulous equipment to help me. I was taught how to cook, sweep and get myself to the bathroom and my leg kept getting better and better."
She even wangled a day pass mid-way in the 18 day hospital stay to go to her brother-in-law's birthday "and I went with walker and wheelchair."
It was not the awful experience Tiffany had expected and she had taken the surgery very calmly thinking I am not going to feel any pain and if I do not recover I won't know anyway. But she says "One of the most difficult things was to lie there not being able to move because even though my right side was working you really need your whole body to make any significant movement in a bed. I had to patiently like there 24 hours a day, that was the hardest part for me as I didn't want to call the nurses and harass them, and to move even half an inch was difficult."
Six weeks later, it was time for another six-hour operation to remove the second tumour, which could have affected her sight this time: "So I opened my eyes hurriedly and found I could see." She was not as upbeat for the second piece of surgery: "I was not as game this time. I was more timid, pensive, quieter as I went through the process again. It was a little tougher as my pressure fell and they had to give me medication. I have lost some peripheral vision on my right side. But the doctors say everything would take time to come back and it is all coming back gradually. I also now realise all the little everyday things we take for granted which can sometimes now be a problem. For instance I must concentrate before starting down the stairs."
Tiffany believes her healing process was easy because she was a well person prior to the surgery "so I woke up just as though I had been sleeping. I was a pretty good patient and did not have too many post- surgery complications and just simply continued with my life." "From the hospital I started living a normal life, putting on my make up although I had to make a concerted effort to lift my hand with the mirror. It was important to me to resume my life. I never felt I was sick. I had this growth, took it out and now had to get up and walk out of there. I always felt in good spirits and health. I had my make up and hat because I was now bald."
Tiffany won two hospital awards which she will always treasure along with a drawing another patient, Mr Roberts, who communicated with no one, did of her. One award was "Rookie of the Week" and the other "Most Valuable Patient" for being cheerful, helping other patients, and even leading a jam session on the piano for the other patients."
Lots of times we hear others or say ourselves "there were no warnings." Tiffany's experiences underscore the point that warning symptoms are usually ignored. In retrospect, she remembers just before the first seizure the instructor at the gym would say to her lift that left leg, you are getting lazy: "I did not know that I was not lifting to the required level." Then getting into the car "I now realise that sometimes my right leg would bump into the left as I was obviously not moving it around fast enough.
I had started playing music again, got myself a piano and was taking lessons from Kathleen Cumberbatch. I was learning a particularly hard piece of music with my left hand and everything was jumbled. I could not get it straight at all, I kept working through it and nothing happened. Now I remember that the first episode happened right after that and then it all came to me that it was all happening to things on my left side but when you do not have pain you assume nothing is wrong."