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Moyamoya Related Topics >> Moyamoya Related Information and Support >> Hi - I was recently diagnosed with MM http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1132674471 Message started by BayouBoy on Nov 22nd, 2005 at 10:47am |
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Title: Hi - I was recently diagnosed with MM Post by BayouBoy on Nov 22nd, 2005 at 10:47am
Hi everybody, I was recently diagnosed with MM. I have sent my CT-a etc. to Stanford - just waiting on them.
I was diagnosed by Dr. Harrigan of the University of Alabama Birmingham (He's a partner of Dr. Fisher) Anybody every heard of Dr. Harrigan? Anyways look forward to talking to anybody . . . Parker |
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Title: Re: Hi - I was recently diagnosed with MM Post by cubbie on Nov 22nd, 2005 at 11:16am
Welcome aboard Parker!
You have sent your films to one of best Doctors! there almost 600 people on this site,so someone may be able to give information on Dr Harrigan. While you are waiting,there is a wealth of information and people to help. Again welcome to the site. Kevin |
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Title: Re: Hi - I was recently diagnosed with MM Post by Lore on Nov 22nd, 2005 at 11:20am
Hi Parker [smiley=wave.gif]
Welcome to the moyamoya family. Sorry we have to meet this way but you have come to the right place to ask questions and get educated about moyamoya. There is a wealth of information under the moyamoya related topics thread as well as resources and physicians. Just ask questions as someone on the board has more than likely experienced the same or similar thing. My brother Kevin, (Cubbie) has MM and we sent his films to Dr. Steinberg at Stanford and received a response in just a few days. Dr. Steinberg is one of two MM specialist in the U.S. Kevin had two direct bypasses this May at Stanford by Dr. Steinberg. Prior to the surgeries, Kevin had gone mis-diagnosed and undiagnosed for 4 years and had a significant stroke. It took several neuro's, vascular docs and radiologist to finally give a diagnosis of MM and then they sent Kevin home to live out whatever life he had left. Of course, I refused to allow such a thing. We found moyamoya.com and that's how we found Dr. Steinberg and we are eternally grateful to Dr. Steinberg, Teresa and the Stanford team for not only saving Kevin's life but giving him hope when no one else would give him the time of day. We are grateful to DJ for providing this magnificent site. Without moyamoya.com we may never have found our way to Stanford. I'm interested in your story and what your symptoms are and how you came to be diagnosed with MM. Look forward to hearing more about you and your MM. Lore |
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Title: Re: Hi - I was recently diagnosed with MM Post by Seachelles on Nov 22nd, 2005 at 12:44pm
Welcome Parker!
Glad you have found this site and have sent your scans to Dr. Steinberg. I had my surgeries with Dr. Steinberg in November 2004 on both sides. My brother was also recently diagnosed and had his surgery just about 2 weeks ago. He is doing well and is having a remarkable recovery. I was also misdiagnosed for a year before I was told that I have moyamoya. Through a long struggle and 2 major TIA's, I was finally diagnosed correctly with a better hopsital. I wish you much luck and hope that you take the time to read as much as you can on this website. It is chock full of great information and as I always say, knowledge is power! If you do have any questions, we are all here to help in any way we can. You will find that everyone is very supportive here. My thoughts and prayers will be with you and your family. Michelle |
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Title: Re: Hi - I was recently diagnosed with MM Post by Monica on Nov 24th, 2005 at 1:15pm
Hi Parker
…and the rest of you online! You’re doing the right thing by going to Stanford! I was diagnosed with MM in August and just had my surgery at the end of September at Stanford. I think Dr. Steinberg and the entire staff at Stanford is great. I remember how confusing and emotional it can be when you are initially diagnosed but believe me, the surgery is not as bad as it seems. I had 5 strokes and quite a few TIA’s between Aug to Sept so having the surgery was a huge relief. Everyone recovers at a different rate but I was back to work 3 weeks after getting out of the hospital. If you have any questions or just want to talk about how you feel, don’t hesitate to send me an email. I know it must be hard for you right now but talking to people on this site helped me tremendously! It’s nice to talk to people that have been through it or people who have loved ones that have been through MM…so really, don’t hesitate to ask questions. Monica |
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Title: Re: Hi - I was recently diagnosed with MM Post by kotipup on Nov 25th, 2005 at 10:26pm
Hi, Parker. I'm glad you found this site, and glad you've already sent your studies to Stanford. It sounds like you're doing all the right things! :D
Just to join in, my daughter, Daphne, was diagnosed with MM at 15 months old - after suffering two strokes - and Dr. Steinberg at Stanford did her surgeries. She has had a wonderful recovery, and we owe her life to Dr. Steinberg (the doctors here at home told us she'd probably die within two weeks after her second stroke!) Dr. Steinberg and his team are wonderful. Please let us know if you have any questions or need any support. We are here for you! ;) |
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Title: Re: Hi - I was recently diagnosed with MM Post by itsme on Dec 2nd, 2005 at 1:03pm
Hi Parker,
You sent your CT to the right place. I had MM sugery in June and just got my 5 month follow up. I'm not out of the woods yet, cause I still have to deal with my left side, but the right side is doing exactly what it's supposed to. HE IS AWESOME. Parker if I have to do it all over again it's ONLY WITH DR. STEINGBERG and Stanford. The team they have for MM is outstanding. Don't worry, most of us on the board has MM and went through the hard part.....SURGERY only because we did not know what to expect and it was dealing with our "Hard drive" that was scary.... BUT, you will be amazed at how much you will improve after the surgery and there is hope and a treatment. Keep us posted and we are all rooting for you! LOL, itsme |
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Title: Re: Hi - I was recently diagnosed with MM Post by gotchlorine on Dec 2nd, 2005 at 1:41pm
Hi Parker,
I was wondering if you've heard back from Dr. Steinberg yet. (???) I, too, believe you've sent your films to the right place. You can't do any better than getting an opinion/care from him. Looking forward to an update! [smiley=hug.gif], Jill |
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