So, we were diagnosed Oct 3rd, are follow-up is scheduled at OU Childrens for next Tuesday the 23rd of Oct, both my wife and I have called to find out if we will be setting up the angiogram or what. What we have learned is this is just a follow-up appointment at the clinic to check on my son Benjamin with nothing scheduled. When we initially went to the ER on Oct 3rd we were under the assumption this was a priority, but we are starting to feel that is not where the Dr's are coming from. I am not sure if we are just overreacting or if I should push them on this. They want me to take my son out of school for half a day for a clinic visit that isnt needed unless they plan on scheduling something. Am I off base?

Robert-

I would think that if someone made a diagnosis of Moyamoya that they would be scheduling something.  They may talk to you about tests, etc when you do the followup...our doctors told us to remember that MM didn't happen overnight and while it's urgent, our son's case was not emergent.  If they don't talk to you about tests, etc at your follow up, I would start asking and demanding them or you may have to go somewhere else.  Good luck to you and your family!

Hi Robert. My daughter did not have an angiogram until a few days before her surgery, as the diagnosis was done thru having an MRI-MRA. She saw Dr. Smith at Boston Childrens, and he explained that they use the angiogram to plan the surgery, so they wanted it done pretty much right before. Maybe the appt. is to explain what will happen during surgery. In any case, best of luck to your family.
Pam

Well, it has been a long time since I posted, mostly because both my boys are busy with school and normal everyday activities.

I have communicated with Stanford, and this is what we have scheduled for after school gets out.

Mon Jun 10 Meet Dr Steinberg, then have Angiogram
Tues Jun 11 Evening MRI scheduled
Thurs Jun 13 Surgery #1
Thurs Jun 20 Surgery #2 if needed
Thurs Jun 27 Release

We are looking into Angel Flight for transportation right now, if that doesnt go through we might have to make the 3 day drive because of the cost for 2 RT airlines tickets.

Of course we hope the second surgery isnt needed, but we are prepared if thats what is needed.

Good news though, since our initial diagnosis(Oct 2012) and starting the aspirin daily, Benjamin hasn't has any symptoms!!! No Migraines!!!!!

So this is where we are, if anyone has any suggestions for travel please let me know.

Hope everyone is doing ok,
Sincerely Robert Britton-

Robert if Benjamin wants to talk to Destin before his surgery let me know and we'll get them in touch.  It might help him to talk to someone near his age about what to expect.  you have my email so just let us know.  Glad to hear his headaches have let up.
Donna

Fortunately, school is the big occupier of his time, so he really doesnt think that much about it like he did when we just found out. This weekend we are at the State swim meet, I will see if he is interested in talking to her, if so I will text you.

Thanks again for all the support.

Good News today! Just got a confirmation for Airline Tickets from American Airlines Program Miles for Kids. This has been another stressor that I was hoping would come through. I think Benjamin and I are set for the trip in June now.

On a side note, Benjamin still hasnt had any TIA's since we instituted the aspirin regimen in Oct 2012.

Robert-