ok every one I have some questions

1)  If we wait til roberts fully occulded, will he not have already had a full blown stroke?

2) Does the direct by-pass work for people who are Pre-stroke ?

3) does the indirect by-pass work better for people post stroke?

4) does any one out there have kippel-feil syndrome (congenital fusion of the spinal verabrae)

5) I have obtained cd's of all roberts mri and ct to this point..........Should i wait til I have the angiogram as well before sending them on to other DR.s?


For more info on these question please see my thread dated today  under roberts MM treatment.


Thanks for your input.

Mike

1. If you watch a pot of water on the stove will it ever boil?  Yes.  Waiting is foolish advice!!!

2.  Yes.  Only been 7 months but so far so good with my wife.

3.  Not sure.

4.  No.  Sorry about his condition.

5.  Send what you got to a doctor that knows what the hell he is talking about.  Dr. Steinberg would be my suggestion.  If you are talking to a doctor that does not specialize in Moya Moya, then you are talking to the wrong doctor.  You wouldn't talk to a eye doctor about a heart condition would you?  You  wouldn't talk to an accountant about building a house either.

1)  The collateral vessels that are forming in Robert's brain are taking care of the blood flow as the he becomes more occluded.  There is certainly a chance of a full blown stroke, but you never know.  Moyamoya is progressive.  Plus, these collaterals are very thin and fragile - they can break and cause hemorage.  Surgery sooner rather than later is key.

2) and 3)  I'm not a doctor (first!) but the type of surgery performed usually depends on the immediacy of need for blood flow.  In my case, I could afford to wait for the results of the indirect.  That doesn't mean I put off surgery - I was scheduled for surgery within a month from my first appointment with Dr. Scott.  There are others on this site that needed the blood flow that the direct bypass provided - more immediately.  

4)  sorry - can't say I've ever heard of it.

5) I would start sending things to other doctors.  However, they will probably wait for the results of the angio as that is the definitive diagnostic test for moyamoya.  Get the ball rolling though!  They can get Robert's history, and perhaps schedule other tests - while they wait for Robert's angio results.  I would definitely send the info to both Dr. Steinberg and Dr. Scott.

-Shari

Thank you all for your input............Dr. Steinberg and Dr. Scott are on my list ..............as well as some others from the list here.......I will start contacting them on monday and sending out my films overnight

Mike