I'm sorry I haven't written here for a while. It has now been 5 months since my July 5th, Right Auditory Craniotomy.
Firstly I am so grateful the surgery went well they were able to remove the entire tumor. There was another man who also had his 3.5cm Acoustic Neuroma removed on the same day as mine, in the same Hospital with another team of doctors obviously. Unfortunately, because of the blood vessels growing around the tumour they could only surgically remove 5% of his tumour before they had to stop the surgery due to significant blood loss. I could not imagine going through the extent of recovery to know that 95% of the tumor was still in there, I don't personally know him but I hope he is okay.
I did loose hearing in my right ear but they did not have to cut the facial nerve to remove the tumor.
My main unexpected deficit was the loss of co-ordination in my right hand. I'm right handed and want to be a veterinary surgeon so this obviously upset me a lot. However the doctors said that this was caused from the swelling on my cerebellum when the tumour was pulled away from it and it would be a temporary issue. Since then it has, my right hand initially couldn't write but now I can write, draw and crochet with both my left and right hands.
Initially my balance was so terrible that I felt drunk all the time and I couldn't walk without holding onto a wall or person.
I also got terrible bouts of Nausea, that were only healed by me lying down, taking a gravol and sleeping it off.
I also suffered from motion headaches and I still do to some extent but they are gradually decreasing in frequency.
After four months had passed I drank alcohol again but only at home to see how I responded to it and I loved it. I love feeling drunk so maybe that was just my own personal experience.
My face is getting a lot better. When I first did Physio for my face my EMS machine read lower than 2 micro volts but now the readings have gone up to about 14 micro volts. Initially I couldn't close my mouth but now I can move my brow about half a cm upwards and my cheek moves to allow a bit more than a mona lisa smile. My eye also gets smaller now when I smile but not perfectly even just yet, and I can't close my right eye fully yet.
The doctors that did my surgery were Dr. Tamargo and Dr. Francis at John's Hopkins in Baltimore, USA. I am very pleased with my treatment there. At first I was very apprehensive about Dr. Tamargo's manner which came off a bit cold, but after the surgery he came to visit me in the hospital ward for every day that I was there (about 8 days) and do eye movement and neurological function tests. Moreover the nurses there are amazing (so is the soup), they came to check on me every 6 hours, tirelessly running tests and pricking my finger and testing my blood pressure, even if I was tired and resistant. So I commend them on their thoroughness.
Since the surgery I have turned 19 and I have had to take a gap year before university. My university allowed me to defer. I was initially really resistant to it but now I have gained a lot. I just wanted to post this because I know that when I was first diagnosed, I was searching for someone else my age or some kind of positive, relatable story and I just hope now that someone now being diagnosed can know that, though this is terrible, its not as bad as it sounds.
P.S. if u want to see how I look I have made a recent Youtube video. -
http://www.youtube.com/user/rhe188?feature=mhee
