I'm sorry to hear your daughter is having symptoms of MM again. It's jsut so scary to think that there can be problems so many good years after surgery.Will be keeping your daughter in my prayers. Please keep us posted. My daughter is 10 years post surgery,it's not on my mind daily anymore but since she ahd so many complications from teh strokes it's never far from my thoughts.
Mary Grace

Thanks. She has had SO many problems. Her Aorta was involved. Kidney involved (she lost one before her firs surgery could happen). I feel like it has been nonstop for 13 years. Now this. I am truly devastated. Her strokes always happened in her sleep. So know I am back to being afraid she just wont wake up or wake up and not be able to move again.  It is amazing how those memories are still so crystal clear. I remember like it happened just moments ago. 

We found out about her kidney's and aorta during an MRI/A. Her Bp was SKY HIGH. She had blood pressure before that but they attributed to White coat hypertension. But this nurse caught it and said something had to be done. She was two and her Bp was 160's (it should have been 92). So we went and had an Arterialgram. It showed narrowing of not only her brain but her renal arteries and aorta. During that month she lost her one kidney. Over the years we have monitored everything. Her blood pressure was still high a few years later so we did something drastic. We enlarged her aorta by implanting a teflon patch.  Her blood pressure has been stable but she takes a lot of medication.
She also started about 2 years ago having severe abdominal attacks. She has been tested for everything all came back negative. I think it may be related to her MM but I can't prove it. Her spastic legs are due to the recurrence why cant her stomach. I speak with the neurosurgeon tomorrow. We have contacted Dr. Scott and he agreed to help us.   My son also has Neurofibromatosis (NF) and renal problems but no NN. So is the NF that caused the renal problems or the MM.  I don't know
I can say I am very scared and sad.  I am also just...tired.

pmteet wrote on Sep 17^th, 2012 at 1:07pm:


you sound like a great parent, don't lose sight of this

The surgeon here does not feel that the spasticity in her knees are due to new strokes but to the strokes she had at 2. We are consulting with dr. Scott also.
I am very frustrated. She is in pain all the time.

Hi,

You and your child are both so strong to have gone through all this. Keep pushing forward. Hope that you get the answers and results you need. Keep us posted.

Arianne