Hello

I got the diagnoses Moyamoya 1 year ago. I have now seen two doctors here in Norway. The first one said i did should not think more about this diagnosis and live my life as usual. The second doctor said that it is possible to have a surgery but I have to wait until my symptoms is getting worse. I have not had a stroke or TIA.
I sent my MR angio to Dr. Steinberg i june and he tells me I have to do a Bypass Graft on my left side. Now I really dont now what to do. In Norway there is maybe only 2 people with Moyamoya!

Janni

Hi Janni,

I was just dx'ed a few weeks ago. Today I have sent my films to Dr Steinburg.

He is the authority in moyamoya and most doctors have little or no experience in mm, I suggest you plan a trip to the USA and see Dr Steinburg.

MM does not go away and it continues to get worse. Those patients that have not had major strokes prior to surgery have the best post surgery results. Patients that have already had problems have mixed results.

It would be counter-productive to risk a dibilitating stroke to motivate you into surgery.

Hey, we just might be surgery roommates!

sorry you have this....but please, do seek treatment.

warm wishes and hugs.....diane : )

Janni, please listen to Dr.  Steinburg!  Your symptoms and your MoyaMoya will only get worse with time.  Don't wait until you have a stroke!  Please plan your trip to the USA now!  God bless you!

LISTEN to Dr. Stienberg...he is the best of the best in my opinion.  MY Doc's here told me everything was fine...go home and come back if needed.  That meant if I have another stroke.  Well thats to late, right?  I just returned from California yesterday, from my 6 month follow up.  I had my right side done on Feb.1, 2006 and left side(which was basically a double STA bypass) on Feb.8,2006.  The blood flow in the arteries was 0 on both sides.  Because there was absolutly no arteries!After the bypass my left right side was 10 % and left was 17%.  Teresa is letting me know my results from the recheck this week.  Dr Stienberg is out of town, however she says everything looks great! If he say's it should be done believe him, had I not listened who knows what would have happened. I was only diagnoised a few years ago.  Most Nuerologists just don't know enough about the disease, but Dr Stienberg does.  Believe what he says.
And by the way...california is beautiful!!!!!!!!

I must concur with what everyone has said and that is you should do what Dr. Steinberg says.  He is one of the few MM specialists in the country and does hundreds of these surgeries, not to mention at least one a week.  

Both my brother and I have moyamoya and have had the surgeries - me in Nov. 2004 on both sides and my brother on one side in Nov. 2005.  We are both doing great now and are blessed to have had Dr. Steinberg do our surgeries.  He is a true blessing to my family and many others on this board.  

Please....read as much as you can on this website.  The knowledge you will gain will be powerful and invaluable to you.  I'm sorry you have found us, but very glad that you are here among us as we are a great support team and are always here to help in any way we can.  

Good luck and if you have any questions, please do not hesitate to ask.

Hugs,
Michelle