What a wonderful trip!
Posted: Sun Sep 27, 2009 7:26 pm
Hi All!
We went to Stanford on Thursday. Mel had her MRV, MRI. No need for an ultrasound now apparently.
Blood work too.
Met with Dr. Dake, he was just back from Lisbon and is heading over to Liverpool (my home town) in October.
Mel's stents look great, the flow is good and she can stop all the drugs apart from a baby aspirin forever.
Mel still feels great, so much so when she had to fill in the MS quality of life questionnaire she really couldn't think of anything negative to put in. Plus, and more importantly in my mind she said 'it's weird usually I can real off a list of things or am very aware and mentally logging each twinge but I've stopped doing that - so really had to think hard'.
It's all brilliant news.
Dr. Dake and Zamboni have applied for a grant that is for transatlantic cooperation - $5m ! Which will help a study they are trying to put together.
They are taking outside advice but they are recommending a 'fake' stent install with the control group but Dake (rightly in my opinion) thinks that is unlikely to work especially with the internet and 'that site you are all on!'. It would be obvious if you'd have had the intervention or not, mostly to the excruciating pain!
He is finding dramatic results with all 'Mel-type' patients. It's not so good for SP/PP but no one seems to have progressed since intervention but its so early and he makes no claim to being an MS expert. He's desperate to get Neuros on board.
Both in Europe and with him people are getting 'trapped nerve' type pain after the op. It's a real issue and painful. The good news is eventually the nerve seems to grow round the opened vein and the pain goes away. This can take weeks or even months.
It is so hard because everyone is learning as they go along.
Dake did say that its puzzling him that he's not finding the azygous issues that Zamboni is but is now more aware of 'flow' than blockages and he did say that the European ultrasound/doppler technology is 'far ahead' of what is in the US so its a hinderance to us here.
He's hopeful that the transatlantic grant can help with knowledge and technology share (his advanced stents/technique, Zamboni's knowledge of flow, doppler and diagnostics).
It's all very exciting but no miracles are on offer.
So, celebrating the good news (and some professional good news with our company, with yours truly in charge of the bid, winning our biggest ever contract - the award was announced the same day!) we headed up to Napa for a bit of wine tasting and then to San Francisco to wander round and watch the sun go down over the bay with a glass of wine or ten.
Well wishes to everyone.
P.S
No MRI results back in time, I'll follow up but don't expect changes, Mel's been stable since HiCy.
P.P.S
Lew - the technique worked!!
We went to Stanford on Thursday. Mel had her MRV, MRI. No need for an ultrasound now apparently.
Blood work too.
Met with Dr. Dake, he was just back from Lisbon and is heading over to Liverpool (my home town) in October.
Mel's stents look great, the flow is good and she can stop all the drugs apart from a baby aspirin forever.
Mel still feels great, so much so when she had to fill in the MS quality of life questionnaire she really couldn't think of anything negative to put in. Plus, and more importantly in my mind she said 'it's weird usually I can real off a list of things or am very aware and mentally logging each twinge but I've stopped doing that - so really had to think hard'.
It's all brilliant news.
Dr. Dake and Zamboni have applied for a grant that is for transatlantic cooperation - $5m ! Which will help a study they are trying to put together.
They are taking outside advice but they are recommending a 'fake' stent install with the control group but Dake (rightly in my opinion) thinks that is unlikely to work especially with the internet and 'that site you are all on!'. It would be obvious if you'd have had the intervention or not, mostly to the excruciating pain!
He is finding dramatic results with all 'Mel-type' patients. It's not so good for SP/PP but no one seems to have progressed since intervention but its so early and he makes no claim to being an MS expert. He's desperate to get Neuros on board.
Both in Europe and with him people are getting 'trapped nerve' type pain after the op. It's a real issue and painful. The good news is eventually the nerve seems to grow round the opened vein and the pain goes away. This can take weeks or even months.
It is so hard because everyone is learning as they go along.
Dake did say that its puzzling him that he's not finding the azygous issues that Zamboni is but is now more aware of 'flow' than blockages and he did say that the European ultrasound/doppler technology is 'far ahead' of what is in the US so its a hinderance to us here.
He's hopeful that the transatlantic grant can help with knowledge and technology share (his advanced stents/technique, Zamboni's knowledge of flow, doppler and diagnostics).
It's all very exciting but no miracles are on offer.
So, celebrating the good news (and some professional good news with our company, with yours truly in charge of the bid, winning our biggest ever contract - the award was announced the same day!) we headed up to Napa for a bit of wine tasting and then to San Francisco to wander round and watch the sun go down over the bay with a glass of wine or ten.
Well wishes to everyone.
P.S
No MRI results back in time, I'll follow up but don't expect changes, Mel's been stable since HiCy.
P.P.S
Lew - the technique worked!!