Pete in MI
New member
Uncertainties
Posted 10 hours ago
There are many uncertainties with Brian's disease.
Any future surgeries from now on will have to weighed heavily because there are too many unknowns. The tumor under his chin has grown to the point that Brian has to push it to the right in order to suction, but it still isn't at the danger point. We can still change the trach when needed but the space we have to work with makes it a little more difficult.
Surgery to reduct the tumor is a temporary fix at best. The tumors continue to grow and since Brian is going through puberty his hormones are overactive causing his body to repair itself at an excelerated rate causing the tumors to grow like wildfire.
There are two major concerns. The first being that the tumor will grow back faster and larger (as mentioned above) after reduction. The fear of this happening is justified by the rapid re-growth of tumor on the bridge of his nose. Just four weeks after surgery it grew back larger than before!
The second risk is the healing of the incision. Because of all the surgeries in his mouth they are uncertain if enough blood vessels still feed the area to promote healing. He could be left with an open incision if that is the case. We feel this risk is low but...we just don't know.
Therefore, we have elected to monitor the tumor and when it gets to the point where something needs to be done we
Posted 10 hours ago
There are many uncertainties with Brian's disease.
Any future surgeries from now on will have to weighed heavily because there are too many unknowns. The tumor under his chin has grown to the point that Brian has to push it to the right in order to suction, but it still isn't at the danger point. We can still change the trach when needed but the space we have to work with makes it a little more difficult.
Surgery to reduct the tumor is a temporary fix at best. The tumors continue to grow and since Brian is going through puberty his hormones are overactive causing his body to repair itself at an excelerated rate causing the tumors to grow like wildfire.
There are two major concerns. The first being that the tumor will grow back faster and larger (as mentioned above) after reduction. The fear of this happening is justified by the rapid re-growth of tumor on the bridge of his nose. Just four weeks after surgery it grew back larger than before!
The second risk is the healing of the incision. Because of all the surgeries in his mouth they are uncertain if enough blood vessels still feed the area to promote healing. He could be left with an open incision if that is the case. We feel this risk is low but...we just don't know.
Therefore, we have elected to monitor the tumor and when it gets to the point where something needs to be done we
Ma Betty