Surgery….. Sorry, what? 

Sorry you want to what? Remove a bit of my sons brain and put it in a dish? My sons brain will not be in his head.

Okay so since Reed started on drug number 3/4 there has been talk of him being a “surgical candidate” which seemed to be banded about like we were talking about what we were having for dinner and a fairly normal procedure, little did we know the truth…. Surgery is very rare, only conducted at 4 centres in the UK, poses a number of risks (some unimaginable) the impact of understanding what “surgery” really meant is difficult to explain and understand.

So details!

Reed was born with a “Cortical Dysplasia” which in laymans terms and as if understand it means an area of his brain did not develop correctly, he has no clear path ways for messages to pass which in turn causes seizure activity, may stop or reduce development and is fairly drug resistant. This was found from an MRI in October 2014.

Initially thought to be located only in the Temporal lobe it now transpires the extent of the dysplasia is not fully known, due to lots of his brain still developing and having some ‘coating’ on the cells that glows neon (love neon!) when scanned.

So decisions as to the extent of Reeds surgery have been made based on the MRI, week long EEG and presentation of seizures, brace yourselves. Reed will have extensive surgery on the left hemisphere: Full Temporal lobe removal, particial Occipital lobe removal, sever connection to the rest of the Occipital lobe and sever connection to the Pariatal lobe and disconnect the two sides of the brain. Please remember that I am not medically trained or know the real words for each procedure.

The surgeon suggested it was a fairly straightforward procedure. What do I know…. Seems pretty challenging to me! But he is the brain surgeon.

The operation will take 6-7 hours, using the best and most up to date scanning and cutting equipment, he will be brought round very quickly after surgery and we will be on HDU. In HDU for a few days and then onto the normal ward for 7-10 days. Reed will under go a CT scan after 24 hours to check no water on brain or blood clots. Then an MRI 6 weeks later to double check all is right and dandy. (Not sure what they will be looking for)

In that time the brain tissue removed will partly be analysed and checked for cancers and other stuff and the rest of his brain will be utilised in research when it is needed.

I think that’s all the details. Any questions I will happily answer but please bare in mind I am by no stretch of the imagination medically trained!


2 thoughts on “Surgery….. Sorry, what? 

  1. Cindy Cull

    Don’t waste it – the dog might like it… sorry bad taste joke. If you need pies for easy meals just let me know honey child & they will be at your door.


  2. This is Elijah

    Hey mrs, so sorry it took me so long to read this!! This is an amazing story to tell, you will give many people hope and an insight of what Reed and his whole family are going through. Keep me posted with surgery etc and do pop round, we need a proper catch up xx



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