http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya.com Forum en-us Moyamoya.com Forum Fri, 18 May 2012 01:53:26 GMT http://blogs.law.harvard.edu/tech/rss YaBB 2.4 Revision: 1.28 30 http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336775187/2#2 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336775187/2#2 Thu, 17 May 2012 23:20:41 GMT If you are on Facebook you can go to their FB page and I think you can upload a picture there.  <br /><a href="https://www.facebook.com/#!/moyamoyafriends" target="_blank">https://www.facebook.com/#!/moyamoyafriends</a><br /><br />hope that works.  If not email DJ and maybe he can answer your questions. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335262538/4#4 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335262538/4#4 Thu, 17 May 2012 22:26:48 GMT Keeping you guys in my prayers. Hopefully you will finally get some answers to help Kathleen! <br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336600502/6#6 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336600502/6#6 Thu, 17 May 2012 22:24:28 GMT So happy to hear Tanya's surgery went well! My son had the surgery and his head was shaved, but we keep his hair shaved anyway! <br /><br />It is crazy to think how fast they are released from the hospital after this type of surgery. She will amaze you at how well she does! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1337274811/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1337274811/1#1 Thu, 17 May 2012 18:33:55 GMT Before I was diagnosed with MoyaMoya, I had 2 wisdom teeth pulled.  I never thought about until now. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336390323/1#1 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336390323/1#1 Tue, 15 May 2012 22:38:41 GMT Less than a week left to get registered folks.  This is going to be the best Gathering yet!<br /><br />Click the link below for all of the information...<br /><br /><a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383" target="_blank">http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383</a><br /><br />DJ http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1337107491/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1337107491/0#0 Tue, 15 May 2012 18:44:51 GMT A happening in the Benelux area:<br />Ride against moyamoya<br /><a href="http://www.rideagainstmoyamoya.nl/" target="_blank">http://www.rideagainstmoyamoya.nl/</a> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336961189/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336961189/0#0 Mon, 14 May 2012 02:06:29 GMT Well i know we put a lot of trust in our Dr's and nurses but i also know that these people inparticuler the nurses in Intensive care and step down dont get enough credit.<br />Tanya's recovery has been amazing and the support from the nurses in intensive care and ward 7 b had been do so good. yhe care has been exceptional and yhe support for both me and Tanya has made this strezsfull process possible.<br />A huge thankyou to all involved and i guess we will see you all soon to get the left side done.<br />If anyone gets diagnosed with MM have total confidebce in our neuro teams at RNS hospital and inparticiler dr Assaad and his team.<br />Thankyou all again.<br />Geoff and Tanya http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331864060/4#4 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331864060/4#4 Sat, 12 May 2012 03:56:04 GMT I reserved a 40 passenger bus for us today!  Bus will pick us up at the Lodge, drop us off at the game, then bring us back.  If you would like to join us, follow this link: <a href="http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=prodshow&ref=baseball" target="_blank">http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=prodshow&ref=baseball</a><br /><br />See you soon!<br /><br />DJ<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336673227/3#3 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336673227/3#3 Fri, 11 May 2012 01:06:35 GMT Good for you!  It is disappointing that they don't seem to comprehend the problem. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1327412779/5#5 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1327412779/5#5 Fri, 11 May 2012 00:29:54 GMT Ask your doctors before taking omega or fish oil tablets. My daughter is still on aspirin and clexane and was told not to take them as they can effect bleeding and clotting.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1225333159/22#22 Moyamoya.com Forum/Patient Resources http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1225333159/22#22 Thu, 10 May 2012 21:28:26 GMT My wife was recently diagnosed with this, through a follow up to a closing cartoid(sp?) artery thought to be related to Tachyasus (sp? again, sorry) While we applied for her disability back in march of last year, it was denied.  We now have a lawyer, but the really sad part is that since she is tried to work for  several years, it is going to be pitiful what she will get from SSI since they only go back 5 years on income, and it took a long time to get a diagnosis (since we didn't have insurance part of this time).  Through the years the doctors we could afford to go see would treat the symptoms or just say it is your diet...while we are not the picture of healthy eating we do not eat out much and cook semi light with a lot of chicken and turkey.  <br /><br />Well, sorry to ramble, I will get back to reading to see what I can learn from this wonderful site before my 12 hour shift tonight.<br /><br />Mike<br /><br />PS.  We are in Jefferson City Missouri http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335731323/4#4 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335731323/4#4 Thu, 10 May 2012 10:14:54 GMT Destin is having the same issues now and she had her surgery in 2008.  In December she had another angiogram and her surgery site looked good.  Symptoms are still occurring so this month they did an MR w/profusion to test the actual level of blood flow and that came back good as well.  She spent the evening in the ER on Tuesday because her lips were numb, her mouth drooped on the left (again) and her arm and hand were numb/tingly.  The doctors are saying it is migraine related since the surgery looks good.  The moyamoya on the left is very slight at this point.  Who knows though...if there is any there at all couldn't it be causing some of this?  She is so frustrated.  She leaves for college in August and she just doesn't want this cloud hanging over her.<br /> I hope you can get some answers.<br />Donna http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332966048/8#8 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332966048/8#8 Thu, 10 May 2012 02:32:34 GMT Well, I didn't see the post in time to vore, but in my book, Congratulations, Destin - you are already a winner, scholarship or no!  You have already grown more than some people do by the time they are grandparents!  Keep the faith (in yourself as well as God) and keep on perservering.  Check out the book of James - I think you will like it.  I hope you will keep your MM family here posted on where you go in life.  Wishing you all the best! <br />Sue http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334761454/5#5 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334761454/5#5 Thu, 10 May 2012 02:17:25 GMT OK, well, I don't have MM (my son does) but, NanStev, I have those moments too! LOL!!!<br />Hey the book about the RR guy is called "Phineas Gage, A Gruesome, but True Story About Brain Science" by John Fleischman - a truly amazing story. And, yes, just like any other thing the brain controls, the personality can suffer from the damage, too.  But it, too, can be rehabilitated.  We are incredibly and wonderfully made and other areas of the brain can be trained to take over lost functions.  Yes, it takes work and time, but ain't it worth it to get yourself back? <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/cheesy.gif" border="0" alt="Cheesy" title="Cheesy" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1328066481/11#11 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1328066481/11#11 Thu, 10 May 2012 02:06:36 GMT I checked with Alex's cousin yesterday and learned that Alex passed away last month.  He never really came out of his coma and his body was shutting down.  With his heart condition AND MM, it was just too much. Thank you all for your thoughts and prayers and just please continue to keep his family in mind.  I think we all know what they must be going thru even though they know he is now at rest. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1328675429/7#7 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1328675429/7#7 Wed, 9 May 2012 02:45:15 GMT Good luck!  We'll keep your family in our prayers! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1286407216/22#22 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1286407216/22#22 Sun, 6 May 2012 17:53:22 GMT Thanks Emily <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/wink.gif" border="0" alt="Wink" title="Wink" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336226149/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336226149/0#0 Sat, 5 May 2012 13:55:49 GMT Kathleen and I will be at Boston Children's Hospital May 7,8, and 9. Anyone else going to be there?<br />Mary Grace http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336015264/4#4 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336015264/4#4 Fri, 4 May 2012 23:11:13 GMT Hi, We are relatively new at this MMD as well.  My daughter was diagosed in January this year.  She is 22.  Her symptoms were daily headaches, and frequent migraines.  We have been trying to figure this out for about 4 years of Dr. visits, neurology visits, etc on the headaches.  It was quite by accident that we found out she had MMD.  She was having an MRI done for some persistent jaw pain from a car accident 2 years ago and her jaw kept locking.  That is unrelated to the MMD, but through the imaging, they found the narrowing of the right ICA. She had a TIA in Jan which took us to the ER and more tests which led to the MMD diagnosis.  No personality changes, except for moodiness, which is atributed to the frequent headaches, no doubt.  She is just as terrified!  We are trying to find a surgeon now, which is so difficult.  We live in San Antonio TX and there does not seem to be anyone here in my area that have experience with MMD.  We had planned to have Dr. Steinberg at Stanford CA do the surgery (he has seen her scans and offered to do it) but our insurance will not authorize it.  So frustrating!  Found a Dr. in Dallas that we are hoping to see soon as our insurance authorizes it.  Hang in there.  It is a long road, but the surgery does seem to have alot of success.   http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383/21#21 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1312755383/21#21 Fri, 4 May 2012 02:58:47 GMT Our room block for the Gathering is full.  We are talking with the Lodge to try and get some additional rooms added.  We will let you know as soon as we hear back... hopefully tomorrow.<br /><br />Please don't forget you also need to "Register" for the Gathering which is different that making a reservation at the Lodge.  Registration fees go towards the food, hospitality room, snacks, etc, etc.  There are currently 5 families that have made hotel reservations (totaling 21 people) that have made hotel reservations that haven't yet registered.  Please get your registrations in as soon as possible.  Thank you. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1130535415/26#26 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1130535415/26#26 Thu, 3 May 2012 03:09:08 GMT Hello MoyaMom:<br /><br />I wanted to say that I dealt with neuro;s in bham at UAB and they were good but am now seeing neuros at Mayo clinic in jaksonille, fl.... in 07 i was seen by a neuro in bha who said i had neurovasculitis and gave me lots of meds... they helped but only for a bit. last year everything came back with a vengance and my neuro here in dothan suspected moyamoya and sent me to Mayo.... that goodness he did b/c now i am being seen by a group there who sepcialize in MMD and are hopefully going to get this taken care of as best as they can.. i would suggest a 2nd and 3rd opinion for your son dear......<br /><br /><br /><b><a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1130535415/13#13">MoyaMom wrote</a> on Nov 18^th, 2005 at 5:27pm:</b><br /><div>Jill, Michelle and Kevin,<br />My son is 28 and had a stroke on July 23rd of this year.  He did not have any lasting symptoms.  That started a barrage of tests which led to a neuro in Ft. Walton, FL.   The surgeon, suspected MM, because he was stationed in Japan and saw it alot, but is not qualified, by his own admittance, to treat it.  He sent us to UA Birmingham Medical Center where he saw a Neurosurgeon who did an angiogram and diagnosed MM.  My son just went back this week for a special MRI that measures blood flow.  His bloodflow is normal, and the veins his body has made to make up for the 100% blocked ones are very strong in the NS's opinion.  So he is saying wait until symptoms get worse, even though he has never done an MM surgery.  Needless to say we are seeking 2nd and 3rd opinions and fast!!  We have DVD's of angiogram, CTA, and recent MRI.  I read that Dr. Steinberg in LA will look at them at no charge and give a determination.  Dr. Lewis at UFL Gainesville, FL will look at written reports of the tests at no charge.  That is where we are at this point.  Any tips, info or suggestions are greatly appreciated!! Sorry, Jill for the repeat, I sent this to you privately.<br />Marguerite </div><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336012435/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1336012435/0#0 Thu, 3 May 2012 02:33:55 GMT So I live in southeasty alabama and have just found out i have MoyaMoya... i have been told since 2007 it was neurovasculitis but was misdiagnosed it seems.... luckily i have a good neuro in dothan huh! i am terrified and just starting to see doctors at the Mayo clinic in florida.... i am also doing research on this disease to see what i have to expect and what can be done, I would really appreciate any help or infor or just a friend with the same thing...... http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335963465/0#0 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335963465/0#0 Wed, 2 May 2012 12:57:45 GMT <br />Dr. Khan is an excellent resource for those of us in Europe. <br /><br />She has a wealth and breadth of experience, access to the latest diagnostic tools and tests for both children and adults, and a wonderful manner.<br /><br />PD Dr. med. Nadia Khan<br />Specialist Neurosurgical Consultant<br />University Children's Hospital Zurich<br /><a href="http://www.kispi.uzh.ch/Kinderspital/Chirurgie/Chirurgie-1/Neurochirurgie/Moyamoya_en.html" target="_blank">http://www.kispi.uzh.ch/Kinderspital/Chirurgie/Chirurgie-1/Neurochirurgie/Moyamoya_en.html</a> <br /><br />nkwfns@gmail.com <br /><br />Neurovascular Fellowship, Department of Neurosurgery, Stanford Medical University, Stanford, CA Jan 2008 August<br />2010 with special interest in Moyamoya and EC-IC bypass surgery.<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1315794271/15#15 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1315794271/15#15 Sun, 29 Apr 2012 13:40:35 GMT Yes, I needed a 3rd bypass.  Still have severe headaches every day.  Have tried every medication. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335387740/3#3 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335387740/3#3 Sun, 29 Apr 2012 07:48:10 GMT That is awesome! Keep doing what you're doing guys! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1071435355/32#32 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1071435355/32#32 Fri, 27 Apr 2012 02:35:55 GMT We are waiting on our authorization from Tricare so we can schedule surgery with Dr. Steinberg ASAP. Working with Bob and Teresa has been great. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1304952202/4#4 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1304952202/4#4 Wed, 25 Apr 2012 12:54:51 GMT Who do you see at Johns Hopkins? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1286835504/16#16 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1286835504/16#16 Wed, 25 Apr 2012 00:52:47 GMT Hey <br /> good job kate congratalations,<br /><br />CASSIE <br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332210640/11#11 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332210640/11#11 Tue, 24 Apr 2012 21:10:24 GMT Hi Carey!<br /><br />My daughter would love to email your daughter too!! How did your appt go at Boston Children's Hospital?<br />Dawn http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1305830766/4#4 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1305830766/4#4 Tue, 24 Apr 2012 01:07:28 GMT Best food has to be the Mac and Cheese and Boston Childrens Hospital!!!!!!!!!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335229593/0#0 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1335229593/0#0 Tue, 24 Apr 2012 01:06:33 GMT Happy Birthday Kate!!!!!!!!!<br /><br />Sorry I remembered late but at least it was in the month of April.<br /><br />Love You,<br /> <br />17 WOW LOL Can't wait until next birthday!!!!!!!!!<br /><br />Cassie<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334931864/3#3 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334931864/3#3 Mon, 23 Apr 2012 02:34:00 GMT Lynn, my daughter just turned 18 this month.  The surgery didn't get rid of her headaches either.  Her surgeon told her he couldn't guarantee that it would.  At least she has blood flow now.  Vimpat is a siezure med.  Apparently they are used a lot for migraines.  she's been on Topomax and Keppra.  The Keppra worksed but it made her very angry.  One of the side effects is nicknamed Kepprage!  The Vimpat is working better than anything else she has tried without the side effects.  If you have any questions you can email me at djinkster@aol.com.  Just put moyamoya in the subject line so I know it's not spam. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1225617896/8#8 Moyamoya.com Forum/Patient Resources http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1225617896/8#8 Sat, 21 Apr 2012 15:29:51 GMT I have an extra room and live in ct 2 hours from Boston. Anyone is welcome to stay with us http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334027797/5#5 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334027797/5#5 Sat, 21 Apr 2012 15:17:46 GMT Great news!!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334368827/2#2 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334368827/2#2 Tue, 17 Apr 2012 13:32:39 GMT So sorry to ehar aobut your brother. Your a wonderful big sister to be so concerned and willing to go out and bring awareness to this disease. It's very important to make otheres aware of this disease since it's not always diagnosed in time. So for that I thank you. My daughter has Down syndrome also and has Moyamoya. She was diagnosed at 5 and is now 15. Unfortunatly she had several strokes and severe enough to leave her with even more dissabilities. One way you can bring awareness is to check out the online store here on this site. There are T-shirts and bracelets. Bracelets can be handed out or sold. I've given out some bracelets and they will usually start up a conversation about the disease. Thanks again and many prayers for your family as they continue through this journey. Keep us posted!<br />Mary Grace http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334500253/0#0 Moyamoya.com Forum/2012 Moyamoya.com Gathering http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334500253/0#0 Sun, 15 Apr 2012 14:30:53 GMT People have asked about additional hotels in the area in case the Great Wolf Lodge ran out of rooms.  Below is a map of some hotels near the Lodge and a link to Google with all of the information:<br /><br /><a href="http://maps.google.com/maps?hl=en&rls=com.microsoft:en-us&rlz=1I7GGLD_en&q=hotels+near+great+wolf+lodge,+kc&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&biw=1280&bih=884&wrapid=tlif133449844664910&um=1&ie=UTF-8&sa=N&tab=wl" target="_blank">http://maps.google.com/maps?hl=en&rls=com.microsoft:en-us&rlz=1I7GGLD_en&q=hotels+near+great+wolf+lodge,+kc&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&biw=1280&bih=884&wrapid=tlif133449844664910&um=1&ie=UTF-8&sa=N&tab=wl</a><br /><br /><br /><a href="http://www.moyamoya.com/kansascity2012/HotelMap.gif" rel="gb_image[nice_pics]" title="..."><img src="http://www.moyamoya.com/kansascity2012/HotelMap.gif" name="post_img_resize" alt="..." title="..." border="0" /></a><br /><br /><br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332264027/2#2 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332264027/2#2 Sun, 15 Apr 2012 00:51:13 GMT So sorry to hear this! I hope Boston can finally help her. Will keep her in my prayers.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1330976980/1#1 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1330976980/1#1 Sun, 15 Apr 2012 00:49:24 GMT MaryGrace,<br /><br />Happy belated Birthday to Kathleen! I bet you made her day by getting her a cell phone! Christopher will be 13 this July, it is amazing how fast they grow when you stop to reflect. Hope all is well with Kathleen and your family! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1333684421/3#3 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1333684421/3#3 Tue, 10 Apr 2012 05:35:15 GMT hrsridermom - thank you for replying. I hope you find a new neurosurgeon who you like as much as the one who is leaving. As for Dr. Steinberg,  I have never been in contact with him so I don't know if he will be willing to look at my scans. If I can't find anyone else within close proximity, I will contact him and see what happends. The worst he can say is no, and he may be able to suggest someone else close. <br /><br />KathyMC - Thank you for your suggestions.  I am so very sorry to hear that the procedure did not work for you.  i will say a prayer for you.  I'm also sorry for your experience with Dr. Rose Du.  She did not assist with my surgery, but I saw her for my second post op appointment (Dr. Day left the week after my surgery) and I did not like her at all. She was very distracted and did not look me in the eye. I asked her questions and she rushed through the answers and didn't even let me get in many follow up questions.  I never went back to see her, which is part of the reason why two years later I still haven't had a post op angiogram.  I think I'm going to contact the stroke specialist at Yale --Dr. Schindler-- as he was the one who sent me up to Dr. Scott who then sent me to Dr. Day.  I really like him and his coordinator and they always made sure that I saw who I needed to see and had all the necessary tests prior to my diagnosis then surgery.  I will keep the names you suggested just in case.  <br />Again thank you for taking the time to respond to my inquiry.  I really do appreciate it and I'm so grateful for this site.  I'll update after the angiogram. Thanks! <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/smiley.gif" border="0" alt="Smiley" title="Smiley" /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331280027/4#4 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331280027/4#4 Mon, 2 Apr 2012 19:39:08 GMT I also might know someone.  I have a friend who's husband works in this line of business. If needed I can always check with him or pass his information along. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1099429647/19#19 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1099429647/19#19 Thu, 29 Mar 2012 19:48:58 GMT Ally,<br />You will be in great hands! I LOVE Dr. MEYER!!!!! I am MEDICATION FREE (excluding 81mg of asprin daily) after 3 years! I may get a migraine once every 3 months. I DO NOT have a visiable Scar. He did not have to shave my head for the surgery.  I had one check up with him 6 months after my surgery and I had 100% blood flow back from 40% from before!<br />Becky http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1326166961/2#2 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1326166961/2#2 Thu, 29 Mar 2012 11:27:08 GMT Hi ladybug,<br /><br />No, it's not too late to register.  The deadline for registering won't be until mid-May but the there probably won't be any rooms left at the resort by then.  Adult registration is $75 or $55 and rooms are $129 TH-F-Su and $149 Sa.  Please follow the link in the post at the top of the page for more details.  Information on the genetic research is in this post: <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1325823430" target="_blank">http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1325823430</a><br /><br />We don't have a room share option set up but you're more than welcome to ask if anyone would be willing to share a room here on the message board.  People at past Gatherings have worked out room shares and it's worked out well.<br /><br />Hope this helps and hope you can make it!<br /><br />DJ http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1330020529/3#3 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1330020529/3#3 Wed, 28 Mar 2012 05:51:28 GMT I have blurry vision as an adult in my mid 20s!!  I had surgery 6 years ago, but havent been able to get a check up in four years due to lack of insurance and finances.  Glad I'm not alone in this one. It sometimes takes me about 6 hours to wake up before the fog/migraine and blurry vision lifts.  I am korean, too. Adopted!  Are there doctors in Korea experienced with moyamoya? : ) http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1323940725/7#7 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1323940725/7#7 Wed, 28 Mar 2012 02:00:15 GMT We recieved a mail back from Dr Steinberg today basically confirming I have bilateral moyamoya disease which is worse on the right hand side. He has recommended revascularization of the right hemisphere and monitoring the left annually for progression.  <br /><br />What I found fascinating was that they said my scans show 'Watershed Ischemia' (which i googled) and it just explained so much but made it seem all the more important to get the op.<br /><br />My neurologist will be getting back in touch about costing etc.  But knowing that I only need the one op does make things seem a little bit better then before. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332467505/2#2 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332467505/2#2 Mon, 26 Mar 2012 05:33:57 GMT Where are you having your surgery? The Neurosurgeon that I saw in Boston said he knows of 2 doctors that will do a "high flow bypass" one is in Seattle and the other in Saint Louis, which I'm not sure that my husband and I can afford to go such a distance since were in Massachusetts.<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332435349/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332435349/0#0 Thu, 22 Mar 2012 16:55:49 GMT The headgear for a CPAP mask can't be used after Moyamoya surgery because of pressure on the incision(s) resulting in poor sleep. Today I was looking around for an alternative and found one-won't list the company but entering "oral c-pap mask" into search engine should bring you to several sites for this. It won't suit everyone but will suit some and alleviate the poor sleep they now have. Just an FYI  <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/smiley.gif" border="0" alt="Smiley" title="Smiley" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1330047314/5#5 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1330047314/5#5 Tue, 20 Mar 2012 01:47:07 GMT Hi Cassie, sorry to hear you are having surgery! Hope everything goes well! Courtney and I will be in Kansas!! Can't wait to see you and your family.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332127419/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1332127419/0#0 Mon, 19 Mar 2012 03:23:39 GMT Just booked our trip! Courtney and I will be there friday to monday!! Can't wait!! Come on June!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331852185/2#2 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331852185/2#2 Mon, 19 Mar 2012 03:02:27 GMT Hope your appointment went well and he answered your questions and gave you a plan for treatment.<br />Was wondering whether you asked about genetic testing your children?<br />Thinking of you and wishing you good luck.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331835284/3#3 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1331835284/3#3 Sun, 18 Mar 2012 17:50:52 GMT Glad you get to see someone before June! <br />Lots of little things with my daughter that now I think - that was a sign I should have paid more attention too - like hand numbness, tripping over nothing, fatigue.  Hind sight is 20/20 though!<br />Good luck with the new doctors and getting in soon!<br />Jody