We heard from Dr. Spaeth (who has consulted with Dr. Shiels) both in Columbus, OH. They were very pleased to find that the growth in Greyson's chest cavity has shrunk since Dr. Spaeth did surgery. We are excited to hear this news and hope that is stays that way. They confirmed that there is a small amount of regrowth in his shoulder (behind his clavicle) and the larger cyst in his elbow area has gotten a bit larger. Dr. Spaeth said that is expected since his lymphatic system "above" it has been removed since it was part of the growth. She also noted that there is some micro-cyst regrowth in his lower chest area by the incision.
They feel like treating the larger cysts with sclero in the next couple of months will discourage it from regrowing. She also feels like a follow up surgery, possibly in the fall, to remove the tissue in his elbow and wrist could take care of things for a while. What we have learned is that lymphatic malformations have a mind of their own and doing everything that we can to discourage regrowth is a good idea but will never have a guarantee. We don't want regrowth to cause issues like it did last August so staying on top of things is important.
For now we are figuring out when a trip to Columbus this summer will make the most sense and when Dr. Shiels can treat him. We will keep you posted when decisions have been made.
Have a great week,
Brooke
They feel like treating the larger cysts with sclero in the next couple of months will discourage it from regrowing. She also feels like a follow up surgery, possibly in the fall, to remove the tissue in his elbow and wrist could take care of things for a while. What we have learned is that lymphatic malformations have a mind of their own and doing everything that we can to discourage regrowth is a good idea but will never have a guarantee. We don't want regrowth to cause issues like it did last August so staying on top of things is important.
For now we are figuring out when a trip to Columbus this summer will make the most sense and when Dr. Shiels can treat him. We will keep you posted when decisions have been made.
Have a great week,
Brooke
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