Okay, bear with me here. From my last post on the subject there are drs. at  Mayo Clinic in Rochester, Mn.,
Also at U of Wis. From the links (thanks,DJ!) there is U of Iowa at Iowa city. Are there any other places in the Mid-west that I should look into for this surgery? Also what does anyone think about email contact with Dr. Steinberg for a reference for this area as getting this family to Cal. is out of the question. We've searched for 3 yrs for this kind of info and support and now it's at my fingertips and I don't know where to start.

sisinlaw wrote on Feb 26^th, 2004 at 5:14pm:

Didn't you say in an earlier post, that after your sister-in-laws stroke, they dismissed her for possible surgery?  IMO,  I couldn't get a second opinion fast enough! I would send an e-mail to Dr. Steinberg and every Neurosurgeon who specializes in moyamoya who would listen on DJ's Links, asking them for mm specialists in the Mid-west. (Dr. Steinberg is the best, you would love him! It's a shame Stanford is out of the question.)Then I would get copies of records and films and send them for a second, third, or fouth, opinion ASAP. What ever it would take.

Also, I think you asked in another post for surgeons in Chicago... again, DJ has links... EMedicine.com  Department of Neurology, Loyola University Chicago Medical Center, for one:
http://www.luhs.org/depts/neuro/index.htm   

I would read all you can on DJ's links. Knowledge is everything dealing with this problem and it will help you soooo much when discussing alternatives and trying to get the right answers.

Good Luck!

Mar

Hello Sis,

Please see your previous question (under U of I) for my answers to doctors I have found and used in Chicago with some knowledge of Moya Moya.  I also know who NOT to go to in the Chicago area for Moya Moya but don't want to post that info on a public forum- e-mail me privately if you want to know where I have had bad experiences in Chicago-land.  It took me years to get diagnosed and over 1 year from diagnosis to surgery because it was so difficult to find anyone knowledgable enough about Moya Moya. 

Please let me know if  I can be of more help regarding who to go to in Chicago.

Lisa

I live in Louisiana.  My neurologist is in Dallas.  After reading this website and DJ's story and others, I emailed Dr. Steinberg at Stanford.  He replied to my email after only 3 hours!!!  He said for me to get him copies of my MRI and arteriogram and he, along with a committee of other neurosurgerons that meet once a week would look at my records and let me know what they would recommend since my neurologist in Texas is recommending that I only take meds for now and not do surgery even though I had a stroke on Jan. 25th.  I am going to get those together and send them to him.  What do I have to lose?  I was impressed that he got back with me so quickly and I also received an email from his assistant telling me exactly where to send everything along with their phone number!  I call that prompt service!!  I just believe that with thise disease, we need to get in touch with those doctors that deal with this the most and look at all avenues.  I just thought I would share this with you in case my info helped you  with a decision.  Thanks!