Posted: Wed Mar 17, 2010 4:40 am
ok, am hugely knackered but really want to write this stuff down.
katz had a really great day today, still very tired (baby waking up several times during the night will do that) but she woke up with much more energy and was able to go through the day much longer than normal. but it's not necessarily indicative of anything since she did still have a bit of a crash later this afternoon. but still the signs are encouraging. once the pain goes and (if) she manages a decent night's sleep we will be able to say more.
for those who are curious about what happens in the hospital, here's our experience.
we rocked up for our appointment at 9.30am in the alfred centre where we were given a bed in the "medical day center" (or something) on the 1st floor. parking is a bit of a mess (cost about $28 for the day) and you have to guess which lift will work since the building is still being built.
although the appointment was for 9.30am, the actual venogram wasn't scheduled until 11.30am, so we were asked to fill in a MS QoL survey, and then at about 11am katz was asked to change into a gown and then an orderly came and picked her up and wheeled her bed into the radiology waiting room. the waiting room is kinda dodgy!
at about 11.30 Dr Tuan (I think that was his name) came and explained the procedure to us. Then she was wheeled out to the actual radiology operating theatre. we were told various things about if i would be allowed to accompany her (yes, no, maybe) but ultimately i just hung around and they let me in.
it was very busy and there were loads of people but they were all pretty friendly and i was able to sit with katz while they set everything up. once they were ready to go (they put on their lead aprons!) i was asked to sit behind the glass and watch from there.
they had katz in one of those spinal things where you can't move your head, which was a bit unpleasant for her as she couldn't see or hear much of what was going on. i could see everything and had a monitor of my own to watch.
it is rather amazing and a bit disturbing to watch your best friend and partner's skull moving on the x-ray machine as she talks - while a wire is wiggling around inside it! the wire just sort of pokes around looking for a way forward. eventually they start releasing the iodine and you can see the stenosis, or in our case the complete lack of a stenosis. this part was quite upsetting.
back out of the right and into the left and it was far more interesting as sure enough there was quite the blockage, "definitely an abnormality" as the prof said. he came out and spoke to me and told me that they would be ballooning that one, and so he did. the ballooning went pretty quickly and afterwards you could see that the blood flow was substantially better than before. then he gave me a big thumbs up through the glass!
then he zigged down to the azygos which checked out OK.
Finally, they closed everything down, out of the OR we go, back to the waiting room for 20 minutes and then back to our allotted slot in the day care centre. katz was not allowed off her back at all for 2 hours - so a word of advice, don't drink too much before you go in cos you'll need a bedpan if you need to pee.
after 2 hours katz was allowed to sit up straight and to walk (straight to the loo!), after which prof T came over to chat to us.
we discussed how the right vein was not stenosed and prof T told us that in most cases the left and right jugs are basically joined together but in some cases including katz, the left drains one part of the brain (top or bottom) and the right the other. we were concerned because we thought that the veins were draining the individual hemispheres, while she has symptoms on both sides of the body - but apparently this is not the case, and it all made a lot of sense to us.
we also asked if it was worth going back to melbourne radiology to get the doppler done again to see if we get the same results as last time, since the original doppler said katz had stenosis of both veins. Prof T thought there was some scientific merit in it and suggested we could probably get it on medicare as a follow up test. however, he also said that the ultrasound was "voodoo" (or words to that effect) - basically the blood flow numbers are calculations which are based on a number of assumptions such as the diameter of the vein, which can't accurately be determined by ultrasound. he said ultrasound "is half right half the time" and this is why he really wants to get in there with the catheter and have a proper look around. he also said they could technically do a followup ultrasound at the Alfred but it would have more meaning if done using the same equipment and people at melbourne radiology, and i see his point.
i think this voodoo comment is really interesting and i suggest that anyone who hasn't had a stenosis found should still consider talking to Prof T. he is an awesome dude and very sympathetic to what we are trying to do. he has been nothing but kind, ernest and very much interested in telling us what he thinks and what is going on.. it's really refreshing. so i'd suggest that if the doppler results aren't what you're expecting then don't put too much weight on it. to be honest i don't think he was actually expecting everyone to have problems in the OR. so this is all very interesting information.
anyway... we headed home after this and one of the docs will be calling us tomorrow probably to see how katz feels. no lifting of heavy weights for a few days (though it's hard to avoid lifting our 13 month old!). the current literature says it's OK to breastfeed immediately afterwards but katz didn't want to so we discovered that our baby will drink warm soy milk from a bottle and think it's breast milk (go figure, i think she's self weaning!).
symptomatically, we don't have much to report really. she seemed far less fatigued and said that she felt like she was "thinking better" but given the very poor sleep because of our little girl last night she still had a bit of a crash later in the afternoon. but truth to tell, i'm quite healthy and i'm exhausted too, so it's impossible to separate one thing from the other. but i definitely thought there was a spark in her eyes that i haven't seen for a while... hopefully we will have a bit of a clearer picture tomorrow... we've just moved the little one into her own bedroom at long last so with any luck we will have a pretty good sleep.
finally ... thanks so much to everyone who has been involved in getting us to this point, in particular to adolfo who gave me the details for both melbourne radiology and for prof T, and of course all the others who have brought the whole thing to life for us all around the world. 13 months ago our lives changed magically when our little girl was born. 10 months ago our life changed again with the diagnosis of MS and katz partial blindness in one eye (that hasn't gone away and makes her work quite difficult) and almost constant pain and dreadful fatigue. 9 months later the ultrasound, 3 weeks later and we're the 4th people in australia to have the liberation treatment. we have just had some seriously awesome karma and i am immensely grateful.
and great public thanks to melbourne radiology for doing the tests and of course prof. T for understanding what it's like on our side of the fence, and for being open minded. what a guy!
katz had a really great day today, still very tired (baby waking up several times during the night will do that) but she woke up with much more energy and was able to go through the day much longer than normal. but it's not necessarily indicative of anything since she did still have a bit of a crash later this afternoon. but still the signs are encouraging. once the pain goes and (if) she manages a decent night's sleep we will be able to say more.
for those who are curious about what happens in the hospital, here's our experience.
we rocked up for our appointment at 9.30am in the alfred centre where we were given a bed in the "medical day center" (or something) on the 1st floor. parking is a bit of a mess (cost about $28 for the day) and you have to guess which lift will work since the building is still being built.
although the appointment was for 9.30am, the actual venogram wasn't scheduled until 11.30am, so we were asked to fill in a MS QoL survey, and then at about 11am katz was asked to change into a gown and then an orderly came and picked her up and wheeled her bed into the radiology waiting room. the waiting room is kinda dodgy!
at about 11.30 Dr Tuan (I think that was his name) came and explained the procedure to us. Then she was wheeled out to the actual radiology operating theatre. we were told various things about if i would be allowed to accompany her (yes, no, maybe) but ultimately i just hung around and they let me in.
it was very busy and there were loads of people but they were all pretty friendly and i was able to sit with katz while they set everything up. once they were ready to go (they put on their lead aprons!) i was asked to sit behind the glass and watch from there.
they had katz in one of those spinal things where you can't move your head, which was a bit unpleasant for her as she couldn't see or hear much of what was going on. i could see everything and had a monitor of my own to watch.
it is rather amazing and a bit disturbing to watch your best friend and partner's skull moving on the x-ray machine as she talks - while a wire is wiggling around inside it! the wire just sort of pokes around looking for a way forward. eventually they start releasing the iodine and you can see the stenosis, or in our case the complete lack of a stenosis. this part was quite upsetting.
back out of the right and into the left and it was far more interesting as sure enough there was quite the blockage, "definitely an abnormality" as the prof said. he came out and spoke to me and told me that they would be ballooning that one, and so he did. the ballooning went pretty quickly and afterwards you could see that the blood flow was substantially better than before. then he gave me a big thumbs up through the glass!
then he zigged down to the azygos which checked out OK.
Finally, they closed everything down, out of the OR we go, back to the waiting room for 20 minutes and then back to our allotted slot in the day care centre. katz was not allowed off her back at all for 2 hours - so a word of advice, don't drink too much before you go in cos you'll need a bedpan if you need to pee.
after 2 hours katz was allowed to sit up straight and to walk (straight to the loo!), after which prof T came over to chat to us.
we discussed how the right vein was not stenosed and prof T told us that in most cases the left and right jugs are basically joined together but in some cases including katz, the left drains one part of the brain (top or bottom) and the right the other. we were concerned because we thought that the veins were draining the individual hemispheres, while she has symptoms on both sides of the body - but apparently this is not the case, and it all made a lot of sense to us.
we also asked if it was worth going back to melbourne radiology to get the doppler done again to see if we get the same results as last time, since the original doppler said katz had stenosis of both veins. Prof T thought there was some scientific merit in it and suggested we could probably get it on medicare as a follow up test. however, he also said that the ultrasound was "voodoo" (or words to that effect) - basically the blood flow numbers are calculations which are based on a number of assumptions such as the diameter of the vein, which can't accurately be determined by ultrasound. he said ultrasound "is half right half the time" and this is why he really wants to get in there with the catheter and have a proper look around. he also said they could technically do a followup ultrasound at the Alfred but it would have more meaning if done using the same equipment and people at melbourne radiology, and i see his point.
i think this voodoo comment is really interesting and i suggest that anyone who hasn't had a stenosis found should still consider talking to Prof T. he is an awesome dude and very sympathetic to what we are trying to do. he has been nothing but kind, ernest and very much interested in telling us what he thinks and what is going on.. it's really refreshing. so i'd suggest that if the doppler results aren't what you're expecting then don't put too much weight on it. to be honest i don't think he was actually expecting everyone to have problems in the OR. so this is all very interesting information.
anyway... we headed home after this and one of the docs will be calling us tomorrow probably to see how katz feels. no lifting of heavy weights for a few days (though it's hard to avoid lifting our 13 month old!). the current literature says it's OK to breastfeed immediately afterwards but katz didn't want to so we discovered that our baby will drink warm soy milk from a bottle and think it's breast milk (go figure, i think she's self weaning!).
symptomatically, we don't have much to report really. she seemed far less fatigued and said that she felt like she was "thinking better" but given the very poor sleep because of our little girl last night she still had a bit of a crash later in the afternoon. but truth to tell, i'm quite healthy and i'm exhausted too, so it's impossible to separate one thing from the other. but i definitely thought there was a spark in her eyes that i haven't seen for a while... hopefully we will have a bit of a clearer picture tomorrow... we've just moved the little one into her own bedroom at long last so with any luck we will have a pretty good sleep.
finally ... thanks so much to everyone who has been involved in getting us to this point, in particular to adolfo who gave me the details for both melbourne radiology and for prof T, and of course all the others who have brought the whole thing to life for us all around the world. 13 months ago our lives changed magically when our little girl was born. 10 months ago our life changed again with the diagnosis of MS and katz partial blindness in one eye (that hasn't gone away and makes her work quite difficult) and almost constant pain and dreadful fatigue. 9 months later the ultrasound, 3 weeks later and we're the 4th people in australia to have the liberation treatment. we have just had some seriously awesome karma and i am immensely grateful.
and great public thanks to melbourne radiology for doing the tests and of course prof. T for understanding what it's like on our side of the fence, and for being open minded. what a guy!