EJC wrote:So one month on and where are we.
All improvements have remained to date.
Emma has a very distinct link between eating and degradation of eyesight. The improvements have remained but if Emma misses a meal by an hour or so the sight regresses only to improve once she eats.
We're open to suggestions as here Doctor doesn't have a clue about this one. I have a non medical hunch it's something like a glucose defficiency but I'm grabbing at straws.
We bought a cross trainer this week, mainly for me to be honest, I don't have time to get to a gym so decided to get a gym to me! (I really am a bloater at the moment and need the exercise!)
Emma is trying to use it for short periods to stimulate muscle tone. There's still quite a degree of atrophy to overcome and we have an appointment booked to organise Physical Therapy in a weeks time.
We've hada couple of friends who've not seen Emma for 2-3 weeks comment on how much better she looks, colour in her face, brighter eyes, more stable on her feet, walking better, stairs better etc.
All these little things that are so difficult for me to notice due to seeing the incremental increases daily.
It's good to hear unprompted comments from people who have no idea Emma has had a procedure.
Next update when there's something to report!
Great to see Emma is still doing well, and you are seeing small improvements gradually. I have been doing fine, however my hands and cold sensations have not gone since the procedure, my shoulder is now really sore it has been suggested that this is probably due to the nerves being pinched when they ballooned the azygous, and with time this should go away??? Seen no dramatic changes, but I was told not to expect any, so not worrying too much. The EHC also did say to me that if I want my scan earlier i can, But I may not be able to see DR Gilhooly after, defeats the purpose really!!!Anyway send Emma my regards and Take care