Thursday 24 January 2013

Unfortunate Turn of Events

As I've mentioned in my last post, we have been preparing for Stephanie to have her second brain surgery coming up next week.  After yesterday's lumbar puncture, this is not going to happen just yet.

Stephanie had a lumbar puncture (spinal tap) yesterday to determine if the fluid pressure in her brain (intracranial hypertension or aka pseudotumor cerebri) was reasonable enough for the surgeon to be comfortable with opening up her skull.  It turns out her fluid pressure was 41!  This may not mean anything to most of you reading but the number should be around 10-20.  On July 10, 2010 she was admitted to hospital and her first lumbar puncture was a pressure of 76, one of the highest they have ever seen.  This resulted in massive hemorrhaging of her optic discs, leaving her with damaged vision and excrutiating head pain. Throughout the last couple of years her pressure has mostly been in the 20 or 30 range...still too high but we continued to try to manage it with Diamox and Prednisone.

With yesterday's results, the decision has been made to surgically implant a Ventriculoperitoneal Shunt in order to drain the excess fluid.  If left untreated, it would damage brain tissue and vision and leave her in tremendous pain on a daily basis.  The symptoms are the same as if you had a brain tumor, but there is no tumor to treat or remove.

Anyway, we knew that one day she may have to have a shunt but we were expecting to deal with the seizures right now and complete her second brain surgery to help alleviate the number of seizures she has each day.  A shunt is a lifetime ordeal - infections, revision surgeries, complications etc.

Now we are faced with placing the shunt first, getting  her pressure to a reasonable level over time and then considering the second part of her brain surgery.  Just another thing to add to her already very complicated little kid life.

The neurologist was expecting to speak to the neurosurgeon last night to determine when Stephanie can be scheduled for surgery.  I am anxiously awaiting an email or phone call now to find out what happens next and when.

I will keep everyone posted of the events as they unfold.

Ugh!