Sunday, November 25, 2012

Brain Scan Report.

I don't know how long it's been since Louise was diagnosed with PHACE(S) Syndrome but she finally had her MRI/MRA on Wednesday just gone at the same time as she had her heart scan. The rigmarole of cancelled scans, changed dates and so on is water under the bridge and I won't complain now about that.

Having Toast & Juice & Feeling Very Wobbly

The cardiologist looked at the heart scan straight away and came down to see me while Louise was having her toast and was still pretty dozy after the general anaesthetic.  He's very pleased whit how everything is looking, her PA band is holding up great and doing it's protective job very well.  Her Glenn is looking good too.  Everything as well as can be expected.  Her blood oxygen level is good for a Glenn child and her only symptom really is her breathing.  He said he doesn't want to put her into surgery (which I was expecting since her last visit to be after Christmas) until she is seen by pulmonary to rule out any asthma or lung issues which might be accounting for her breathing.  He asked the nurse to ring them and ask could they come down and see her while she was there.

The answer came back that they were too busy and we'd have to make an appointment...and there were no appointments available for THREE MONTHS!!!!

So from building myself up for surgery after Christmas, God knows when it will be now.  I was fit to be tied on the way home and so deflated but on the good side, if her surgery is delayed, the beautiful new state of the art children's cardiac unit will be completed (this summer) in time for us to benefit from it and I won't have to sleep on a thin freezing rubber mattress on the floor beside Louise's cot.

That was the heart.

Thursday John rang to see were the brain scan results ready yet. No, they weren't.


Friday...I answered the phone to John's number.

When your husband starts a conversation with 'Now, before I say's not as bad as it could have been...'

You don't breathe a sigh of relief.

He proceeded to read out what I later learned was half of what was written down.

Rather than try and explain what I don't know myself, here's what it says:


There is a large extra axial fluid collection within the posterior fossa, predominantly right-sided, which is shown to communicate with an enlarged distorted fourth ventricle.  There appears to be complete agenesis of the cerebellar vermis, with significant hypoplasia of the right cerebellar hemisphere.  The posterior fossa appears slightly enlarged, with a mild elevation of the tentorium.  No supratentorial abnormality is identified.  Findings are consistent with a Dandy-Walker Malformation, which appears unchanged since the previous examination.

Regarding the vascular anatomy, the right cartoid artery is significantly smaller than the left.  The right internal cartoid artery is significantly smaller than the left and the anterior and middle cerebral branches are also smaller.  I do not see convincing continuity between the right posterior communicating artery and the posterior cerebral artery.  (Oh, and great news...)   The vertebral-basilar arteries appear normal.'

The bottom line is we really have no idea what the short or long term significance of this is.  Thanks be to God, and I sincerely believe it is thanks to Him, there are no aneurisyms  present which was our greatest fear. So that's good.  I guess we'll need to see a vascular specialist and a neuro-surgeon as well as the birth-mark department which diagnosed her in the first place to see what the course of action will be.  On a very superficial level (and I can always find something superficial to worry about in the midst of great drama), I hope we don't have to go to a different hospital as I suspect because there is ZERO parking available around the one I think it might be and I can visualise me and Louise taking the bus in the city traffic to her appointments.

I was sitting beside John examining the fax today and commented to him that there was no mention of the rest of the scan, only the brain.

 'Oh, that'll be two more separate reports.  I've ordered them and hopefully they'll be ready on Monday'.

What are they going to show up? I don't know.

For anyone wondering why I've put that whole report in this post and that I should be more...well...private, firstly, a lot of my family and close friends are interested and secondly, I'll be posting this in the PHACE Syndrome group page. This is such a rare condition, every bit of medical information is important and of interest to other families, and I'm also hoping some of them might be able to impart some of their knowledge and experience onto me.  If you have any, please leave it as a comment.  This is new to all of us.

In the meantime, I'm delighted to say Louise as ever is a little rascal.  As I write this she is on the floor with my paper cutter (you can't cut yourself on it :-)) cutting my Christmas card making supplies in half.

Oh, and this week she decided to go from full time nappies to fully daytime trained in one day.  I'm very very proud of my little girl.

And did I mention...we love her to bits. ♥

Finger Painting

How To Keep A Heart Baby Warm At Night ♥

Jennifer xx