Right.... I need to vent

Luca's surgeon in the UK suggested we do a SPECT scan (the one done over two days with/without diamox) to measure her perfusion so that we can get a base point for going forward. After weeks of back and forth between him, our local neurologist and various medical institusions, we finally pegged a test which a certain hospital here is capable of doing. Then we waited a couple more weeks for our appointment.

She went for the first scan (without diamox) on Monday. So today was supposed to be the second scan with diamox, but we get a phonecall from the hospital to say they've got no intra-venous diamox, only oral, which is no good for this test. Further more, the entire country hasn't had any intra-venous diamox for years because of the scarcity of tests requiring it. Now Nicky is already on her way to the hospital when they make this discovery.

Very, very frustrating to say the least.

The result is that they've managed to locate some in the UK which they will try to bring into the country for Luca, but due to all the red tape could take up to a month.

OK, vent over, I'm feeling much better, thanks for listening.

Can anyone tell me a little about this SPECT scan? Do they actually measure the blood flow? Does this test give us an idea of whether or not further surgery is required?

Mark (Luca's Dad)

Hi Mark,  I had a SPECT scan in 2004. It was several weeks before I was told about the results. The test does measure the blood flow. I was told that the blood flow was good. I had surgery in 2003 and have not been told to have further surgery. As Lore has said the best test is a PET scan but my health plan would not cover it. I know what you are going thur but stay strong.
Sharon

Hi Paula

Statistically the odds are against Juan also having moyamoya. Was pain in the mouth one of Little Paula's moyamoya symptoms? I've never heard of that.

To quote Dr Scott: "In general, however, a familial or genetically transmitted form of moyamoya disease is rare in the Western Hemisphere."

I'm sure every parent with a child with moyamoya wonders about their other children. I think about it regularly. It's a fear we will all have to live with.

Stay strong, I doubt any of the doctors are suggesting that it's moyamoya, but really just want to rule it out.

Take care
Mark (Luca's Dad)

Wishing all of you success with the hassles your going thru

And especially success in terms of healthy children!

lots of love,

Linda