Dalwyn Smart

Dalwyn Smart. 43 years old

My name is Dalwyn Smart and I have a Suprasellar Arachnoid Cyst.

This is my third one.

My first was diagnosed in July 2000, while I was pregnant with my son.  I was losing my eyesight quite quickly and an MRI scan was urgently required as they were 99% sure I had a brain tumour.  

At the time I was 36 weeks pregnant.

I was induced and baby safely delivered; but Joshua had to spend two weeks in Neonatal because of severe jaundice.  During the two weeks, I was sent to Hamilton to have an MRI as New Plymouth did not have an MRI machine at that time.  The result of course being a Suprasellar Arachnoid Cyst which was a huge relief because it was not a tumour.  The cyst measured 2.8 x 2.8 x 3.5cm.

Back in New Plymouth, I was seen by a visiting Neurosurgeon, Mr Martin Hunn, who explained what was going to happen.  I was scared.  I had to go to Wellington Hospital to have a craniotomy for removal of the cyst.  My husband Andrew, my newborn son Joshua and I were flown to Wellington.  We left our two daughters home with grandparents.  The operation was a success, my vision returned, everything looked bright and cheerful.  It was hard work just having a brain operation and a newborn baby, but we got there in the end.

On a follow-up MRI scan, a year later, the cyst had returned in the same place and again it was removed by craniotomy.  A shunt is not an option as my cyst is in a very awkward place.  Apparently there is nothing safely to tie it to and is very close to the pituitary gland.  They say this is a rare case.  The second cyst was removed in October 2003.

Again, on a follow-up MRI scan, about a year or so later, the cyst had returned once again.  This time we are leaving it for as long as we can because of the scar tissue, as the surgeons had a bit of trouble with the last craniotomy.  

I can no longer have MRI scans because two years ago I was given a pacemaker for my heart (that is another story).  The last CT scan performed was March 2009 and the cyst measured 15 x 18mm.

I have yearly visual field tests performed at the Eye Specialists, the last one in March was normal.  In the last couple of months my vision has changed slightly, I went to an Ophthalmologist to see if I needed new glasses.  He told me that I have a stigmatism in both eyes, but not to say that it could not be the cyst causing pressure on the left optic nerve.  At the moment my new glasses are working fine.  

I do get headaches, dizziness, vertigo and very tired.

So it may be the cyst who knows.  

Friends say I should go get checked out, but that is easy for them to say.

Yes I am scared, the more craniotomies I have the higher the risks of a stroke, seizures and the d word.  My next visual field and eye specialist check up is in March next year and my neurosurgeon follow-up is at the end of 2010.

My Neurosurgeon is fantastic, I now see Mr Andrew Parker who is Mr Martin Hunn's sidekick.  

Life so far has been pretty challenging to say the least.

Sometimes I don't think about the cyst, but every now and then it pops up.  I do think I am lucky as there are so many other people out there going through more frightening illnesses.   I try to stay positive, happy and normal, enjoy life to the best that I can, as you just do not know what is around that corner.

It is comforting to know there are other families out there going through the same ordeal.