I have been following this forum closely, which prompted my decision to reach out to you all today.
My sister’s eleven-year-old daughter is currently battling neurofibromatosis. She has two fibromas within her body—one positioned near her heart valve and another near her spine—both roughly the size of walnuts at this stage. These growths have actually deformed her sternum, causing it to protrude significantly, and they have caused a slight curvature in her spine, resulting in her tilting her head slightly to the right. Her doctors are recommending surgery, provided it is even feasible given the delicate placement of the neurofibromas. As she approaches puberty, there is a growing fear that the condition might become more aggressive. However, since this disease is quite rare here in the States, finding specialists in this specific field is proving to be quite a challenge. Does anyone have any recommendations or know where the best place would be to undergo thorough testing and potential surgical intervention?
I am truly hoping you might be able to offer some guidance.
Warm regards,
My sister’s eleven-year-old daughter is currently battling neurofibromatosis. She has two fibromas within her body—one positioned near her heart valve and another near her spine—both roughly the size of walnuts at this stage. These growths have actually deformed her sternum, causing it to protrude significantly, and they have caused a slight curvature in her spine, resulting in her tilting her head slightly to the right. Her doctors are recommending surgery, provided it is even feasible given the delicate placement of the neurofibromas. As she approaches puberty, there is a growing fear that the condition might become more aggressive. However, since this disease is quite rare here in the States, finding specialists in this specific field is proving to be quite a challenge. Does anyone have any recommendations or know where the best place would be to undergo thorough testing and potential surgical intervention?
I am truly hoping you might be able to offer some guidance.
Warm regards,