Hi Everyone!!

I'd like some feedback about time lines for followup testing. I think different hospitals/doctors have different criteria for followup--which makes sense as I know the path of Moyamoya is so unique. Right now my daughter has had 2 surgeries, 2 strokes --I think she should have MRI's every 6 months. but they're saying a year--then 2 years if she's symptom free. She has recovered well but still has transient tics/tremors and had an episode of weakness around Christmas time. Her EEG shows she still has some seizure activity so she's still on Tegretol 150mg twice daily, and Aspirin 80mg/40mg alternate days due to risk of stroke.

She did have her MRI-CVR and angiogram last June and July/09 and we were told the revascularization looks good.

I'd just like an idea of timelines for followup testing from others!

Thanks!

Dawn

I had my surgeries with Dr. Scott.  I went for a 6 week - general checkup (no tests - he just checked my pulses).  Then in a year for an angio.  I don't go back at all except if I ever become symptomatic (none so far, that G-D!) 

It sounds to me that your daughter is, indeed, symptomatic.  Did you ask about the 6-month MRI's?  I would definitely ask.  Who did her first surgeries?

-Shari

Hi Dawn,

My daughter had two indirect bypass surgeries Oct 2009.  She had a follow-up with the neurosurgeon at 4 weeks post-surgery (post 2nd surgery) and will have an angio in October 2010 to check the new vessel growth.  Ruby's pedi neurosurgeon trained as a fellow with Dr. Scott, and it sounds as though she follows the same protocol that he does.  Ruby also sees the neurologist every 6 months, or as necessary - she just hasn't needed to see her more often than that since her surgeries.

My daughter is mostly symptom-free now, but will have headaches if her fluid intake fluctuates lower than her typical 72-96 oz of fluid per day.  She also sometimes describes a feeling of dizziness (often accompanied by leg weakness) upon first standing after sitting.  This happens a lot in the mornings when I drop her off at school, which is a bit after she has taken her a.m. dose of 1.5 ml of Trileptal.  The Trileptal side effect include dizziness, so I'm not sure if the dizziness/weakness is a MM symptom or if it's a side effect of the Trileptal.  I plan to discuss this with the pedi neurologist at R's next appt. on 5/6/10.  R also currently takes 30 mg/day of Imipramine for migraines, and the standard baby aspirin once per day.

Best regards,

Jennifer