Hi Emily,

My Dad is Head of the Nuclear Medicine department at the local hospital back at home. I'm going to ask him about diamox - that stuff sounds a bit clever! He doesn't do brain scans but might know about diamox especially if they can use it for scans of other organs or bone scans which he does do.

I've had a SPECT scan done but not recently. I remember having an injection but assumed it was similar to the stuff they use in other perfusion scans like CTs and MRAs. I didn't know about diamox - I wonder how it can differentiate between good vessels and bad ones.

I avoid caffeine because I thought that caffeine dilates blood vessels and I thought that dilating  our already narrowed and fragile MM vessels is not good. That said, I know that some people have been put on vasodilators. I don't get it... that said, I still don't get a lot of things about MM!

Hope the whooshing sounds ease soon. I have that but only really notice it when I'm lying down or when I can feel my heart rate rise too quickly for example from getting up too fast or being sick. By the way, I hope you're feeling better - what was it that made you sick?

Best wishes,

Roz

yeah i've since decided that i am downright refusing Diamox if they ever suggest it again. Sure it seems like a clever thing to do: the purpose is to see which parts (and how much) of the brain has diseased (ie. moyamoya) vessels.... but damn it makes you sick..

decided to look it up on the net and found that all my side-effects were quite "normal" (nice of them to tell me what might happen after i left hospital!!)
- tingling in the extremities (to the point of agony)
- fatigue/drowsiness
- nausea
- headaches
- mood changes (happy -> cynical -> bawling)
- hyperventilation (when taken with aspirin - awesome for an mm patient, especially one caning it home on her pushbike!!)
- severe risk of bone-softening when taken with Dilantin (also awesome)

i've had one done before and it didn't knock me around this much. was kinda cool to not hear the wooshing sound but also weird as.... makes me realise how damn long it's been a constant presence in my life!- which in turn makes me grateful that i didn't experience and nasty symptoms earlier as i've had some fairly wild times in the past!

but yeah basically my conclusion is i have huge respect for cancer patients, brain surgery is a piece of cake.

I have just spoken to my Dad. He doesn't use Diamox with any of his scans but as said before, he doesn't do brain scans.

Going back to the caffeine issue, I think I got slightly confused. I think caffeine constricts rather than dilates the arteries of the brain. I've done a search on the web and still can't really figure it out. Either way, whether caffeine constricts or dilates our arteries in the brain, I'm going to avoid it. That said, I still eat chocolate and even decaff tea (which I do drink) can contain a bit of caffeine. I'm sorry for any confusion caused.

Thank you for coffee information, I'm addict big time w/ coffee & tea , I just have to stop cold tuckey so I can hang on and play a waiting game. ;