Mei Maihi

Mei Mahi. 41 years old

My name is Mei Maihi and I was diagnosed with an Arachnoid Cyst in January 2009.

On the 8th of October 2008, I literally woke up seeing double. I originally thought that I’d hit the big time (nearly 40 then) and needed glasses.  I didn’t realise that I was seeing double until I went to the doctor 2 days later.  She sent me straight to the hospital.  Unfortunately, it was a Friday and it was late by the time I organised a ride, sorted someone to look after my son who was 11 at the time and made the hour and a half trip to Whangarei Hospital.  By the time I even saw a doctor it was around 6.30pm and the weekend rush had already started.

They kept me overnight for monitoring.  I was released the next day and told that “it may correct itself within 4-6 weeks”.

Nine weeks later I was reviewed by the outpatients’ clinic and started seeing an Ophthalmologist.  On the 21st of January 2009 an MRI was performed and an Arachnoid Cyst was discovered.

By this time double vision was the most constant symptom.  I had developed, other, more erratic, symptoms: intense headaches, neck pain, light sensitivity, occasional earaches, spontaneous nose bleeds, feelings of nausea, tearing eyes and general tiredness almost all the time.

I kept a diary of the symptoms for three months, trying to establish any patterns.  This only seemed to confirm that my body was old, clapped out and going haywire?  I was starting to get paranoid, constantly over-thinking the smallest of things.  I gave up the diary and started living life instead of analysing it.

Visits with my GP, Ophthalmologists, the Outpatient Clinic and Neurosurgeons brought confusion for me.

On Friday 22 May 2009, I received a phone call advising me I was to have surgery the following Tuesday.  I was shocked.  No-one had discussed surgery with me.  I knew I had been seeing Neurosurgeons, but I was quite shocked that it was going to happen just like that.

Monday 25 May 2009: I was admitted and the next day had a ‘craniotomy fenestration’.

I’ve had a great recovery since surgery.  Most of my previous symptoms have gone although double vision to the extreme left still remains.

I have noticed that I find things much more difficult to deal with when I haven’t slept properly.  I make sure I get to bed at a decent hour.

My handiest hint for anyone dealing with the challenge of an Arachnoid Cyst is: ‘Take a Nana Nap!’

Often if I had experienced a “bad day” I would go home, sleep for an hour and I found that I woke up feeling so much better.  I had tried struggling on but the day would drag, I would get more and more tired, and my symptoms would just get worse.

Take the time to relax, have the nap and you will wake up better equipped to deal with the rest of the day.  These days my need for the old “Nana Nap” is rare!

Although I have a positive outlook most of the time, it has been incredibly hard to remain that way.   The physical recovery has been great, so has the recovery of the intellect but mentally, I have needed help.  I sought counselling and it has been wonderful to talk to someone who can listen.

My parents live close by and they have been a godsend!  ‘My motivation’ has been my son.  He is a young boy (12) but has been very attentive, supportive and understanding.  He says very little of his thoughts or feelings of the situation and just rolls his eyes if I ask (I have found that this is nothing personal just symptomatic of his age and generation).  He has embraced the “Nana Naps” wholeheartedly; it seems he gets way more computer time when I need a nap.  He has been my odd-job man: from assisting me to cross the road to mowing lawns and doing the washing.

On the whole, I am adapting and have returned to something of my former self.  I have started re-training through a local education trust and have returned to work part-time.  I am looking forward to the future and am anticipating the day when I will be debt free and living a life of luxury!

Wish me luck.