My daughter, Cheyenne, is now 16.  Back in '99 she started to have TIA's with one major stroke. She had both sides operated on. The left side was minimally narrowed but obviously effected. 6 months after each side was done there was improvement. Well fast forward a few weeks ago it appears the left side looks the same as it did in '99.  Not awful but she is having symptoms ( spasticity in legs). This week we will be getting an Arterial scheduled.  Obviously I am terrified. I am hoping there is more that can be done.

  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

Hi,

Sorry to hear your daughter is experiencing symptoms. Hopefully you'll get the answers you hope for in the angiogram.
My daughter is 4 yrs post 2nd surgery and stroke and 5 yrs post 1st surgery and stroke-each side done --and a stroke after each surgery.
I know I'm always vigilant-..........and wonder what her future will be too.

Best of luck, and please keep us posted!
Dawn

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.  :'( :'(

Wow that is a lot to be going through. I'm so sorry. I understand how scared you must be. One of Kathleen's strokes was in her sleep. She woke up and couldn't move her arm. Can I ask how your daughter's Kidney's and Aorta are involved. Kathleen has had a lot of complications from her strokes so like yourself for 10 years now we've been working on all this. She was diagnosed with neurogenic bladder, many orthopedic issues from her neck to her feet. Lately many GI issues, celiac,crohn's, and lack of motility in her intestines.  Has your daughter had tests for the most recent sympptoms?
Mary Grace

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.

  I think I've heard of others with MM and Renal involvment. I hope you can get some answers. Dr. Scott is awesome I hope he can help you out or at least point you in the right direction of who can. My daughter has a lot of stomach problems. Most of the problems have caused constipation and she has nerve damage that causes a lot of pain.
Mary Grace

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

I can say I am very scared and sad.  I am also just...tired.

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

PMteet,
May god give you the strength to overcome this. Our prayers are with you. have faith and stay strong!
God bless.

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.

Hopefully dr. Scott can help you figure this out. Has your daughter had an MRI? My daughter has spacisticity from her strokes but it didn't appear years after the strokes. Hope you get some answers, kee[ us posted.
Mary Grace

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