This is our first visit to Nationwide children's hospital in Columbus, ohio. After working with other Dr's in UW Madison who were unwilling to address Mia's pain and discomfort she had been dealing with for the past 18 months, we had enough and needed to do more.
We had been in touch with Dr Murakami during that time discussing the mri results, her medical history and current medical care. He felt he would be able to help address Mia's pain.
Prior to surgery this morning, Mia told him what areas she had regular pain and pointed to each spot; cheek, forehead and below her eyebrow. He commented on how those area's are all tied together and that would fit exactly with her symptoms. She also told him about her mouth hurting, however since he could not visibly see any spots, he felt better to leave that alone for now.
The Dr came out after he finished with Mia's surgery to explain how everything went. As mia told him in the morning, he saw exactly the areas she was feeling pain and injected them with bleomycin. This is what she has had before but the he used a different chemical to mix it with to minimize any swelling. Bleomycin is a chemo medication that, when used in small dosages, can treat these malformations with good success.
He did confirm that the malformation is in her skull but felt that he did not need to be addressed today.
The next steps is to call him after 10-12 weeks to check on how Mia's pain is doing. It may take a few more treatments but the main thing is to keep monitoring it instead of waiting. Especially during the next 3-5 years as Mia goes thru puberty.
We also have another check-up with the eye Dr tomorrow morning to ensure any swelling will not put pressure on her optic nerve causing further vision problems.
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