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,

Vent on! That's what we are here for. To support each other on this journey.

As I'm reading your post, my blood pressure is rising and I'm venting along with you. Seems so ridiculous for Little Luca and her mommy and daddy to have to endure such stress and red tape for such an important test. 

Seems odd to me the test was scheduled without having the Diamox in the first place but it is what it is for the moment. That said,  I might see this in a different light once the U.S. goes to socialized medicine. I suspect nothing will seem odd in terms of reduced care, long waits, reduced availability of certain drugs and chemicals for tests like a SPECT and red tape. Ok, I feel better. LOL!

The SPECT is primarily to see how blood flows through the arteries and veins in the brain. It can detect reduced blood flow and is better than a MRI or CT scan in that respect. There is also a higher resolution test called a PET scan but it is more expensive.

I'm glad the intervenous Diamox has been located and I hope you don't have to wait a month for Little Luca to receive it. I'll say a prayer that the Diamox reaches you sooner than later.

Stay strong. Getting the Diamox into the country is bigger than you meaning you have done everything you can do at the moment.

Keep us posted.

Lore   

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 Mark,

It’s incredible the way that MM patients must pass sometimes,,, everything seems to be more difficult for us …. We must go to Madrid (we live in the Northwest) to have the MRI because they have there an apparatus whit more resolution than the usual ones …   

I think that Lore and Sharon have explained very well this technique: they obtain an image of the brain in colours (blue and red), and those areas with red colour are supposed to be well perfused (not the blue ones).

We go to Madrid on November 18 for the 6 months review of Paula after surgery (she will have the MRI/SPECT), it’s very scary, but the worst thing is that some days ago, our son, Juan (who is seven), has started with some pain in his mouth (up and down at the same time), he has also learning disorder, and we are really terrified because we have been told that the best for him is to have an MRI to discard familiar MM … oh, friends, I can not explain how I’m feeling, I have no words, I can only cry, I know that other had passed through this, but I feel that I don’t have enough strength. Please pray for us.

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)

Hi Mark,

Yes, Paula has pain in her mouth, and it's one of her symptoms .... today we'll go to the dentist to discard any other problem ...

Wishing all of you success with the hassles your going thru

And especially success in terms of healthy children!

lots of love,

Linda