Nancy,

Hi.  I don't have much experience with this disease, yet -- my daughter just had surgery in March (she's 20 months old).

Those headaches sound like they could be migrains, and could very well be related to her moyamoya disease.  I don't think they are a sign of a stroke - but I would definitely make her surgeon aware of what's going on, and request that she be scheduled for studies to make sure everything looks OK.  

Jenny (Daphne's mom)

Hi Nancy,

I’ve thought of you, Andy and the kids so very often. I’m so sorry to hear Emily is getting these headaches and vomiting. God love her, she’s been through so much. I wish I had a definitive answer for you. It’s in my opinion that headaches alone doesn’t necessarily mean a pending stroke, but of course if it’s a sudden case of headaches and vomiting with no known cause, along with her history of TIA’s and stroke, I can definitely see your concern that it could very well be. Has Emily had MM follow up tests, such as a SPECT, MRI/MRA, angio recently? I don’t know the procedures in England, if yearly follow-ups are even the norm after EC/IC surgery, that’s why I ask. I’m just concerned as to whether Emily has sufficient blood flow at this point. Any signs of TIA’s at all? I guess it would be difficult to know at her age though.

I'm glad you're pleased with your consultant, that's so important, but is the doctor and anesthesiologist familiar with MM? I’m sorry for all the questions, but I’m so concerned and have a million thoughts going through my mind. See, here in the US, the MM specialist sometimes keep the blood pressure a bit higher than the norm for MM patients in some cases, to keep better blood flow to the brain, but there's so many different factors for each patient, but that's why I feel that MM experience is so vital.

Oh, is Natalie getting her tonsils out too? I have a twin, and we got our tonsils out together at about the same age, and I remember her being with me, and I felt better, I was just wondering.

Hugs to the twins and Jamie. (Andy too) You know you all are in my thoughts and prayers always!

Please keep us posted.

Mar

Daphne's blood pressure runs high, too.   Actually, Daphne's cardiologist beleives that the reason Daphne had her two strokes right after heart surgery was because the heart defect that she had (coarctation of the aorta) was keeping her blood pressure high.  When they fixed that, suddenly her blood pressure went down, and the result was less perfusion to her brain.


It's just a theory, but it makes sense to me!

Jenny

Another thing to keep in mind is something my neuro told me when I was first diagnosed.  He said that my headaches could be caused by my brain working extra hard to get the blood flow to where it was lacking.  Of course, I'm not a doctor!  But I would take Jenny's  advise and let Emily's doctor know about the headaches and vomiting.
Just my  [smiley=twocents.gif]

-Shari

I know if one has migraine headaches so bad...makes them sick to the stomach without doubt would immediately cause vomiting.   Cara had headaches everyday before surgery....after her second surgery...shortly after she immediately said no more headaches....but never really had bad ones to cause her to vomit though.   Except right after the first surgery...when her swelling was bad, the bandage was too tight she felt so sick...they put her on steroids for 24 hours...swelling came down, and she felt alot better.  I don't consider headaches indication of pending stroke...its more like the TIA's before surgery indicating possible stroke....but Cara continues to have TIA's (not as much but still some)...and its been almost a year she's had her surgeries (July 04 and Aug 04).  I'm continously watching her....hoping its just still part of the healing process.  CarasMOM