http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl New Moyamoya.com Forum en-us New Moyamoya.com Forum Tue, 7 Sep 2010 03:51:58 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=1283825640/0#0 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283825640/0#0 Tue, 7 Sep 2010 02:14:00 GMT Hello. Just thought I would share with you that Adriana's first day of school is tomorrow. She is going 4 days a week for 3 hours a day. After all she has been through we weren't sure this day would come. Any advice about informing the school about her disease without freaking them out. We have told the staff about MM but not sure they fully understand. Her last MRI showed good blood flow. It is a very exciting time 4 us. Please say a prayer for both her & I. Thank you Danielle http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282911200/6#6 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282911200/6#6 Tue, 7 Sep 2010 01:38:51 GMT I also wondered if u have heard of assistive technology devices. Adriana had an evaluation done last week by a team hear in Michigan that deals with such things. They are great for kids that can hear & understand but cannot speak. There are many different devices they offer like pictures 2 point at & even computers that let them communicate there needs. It also helps them make choices. You can look it up on u tube. There are tons of videos so u can see how it works. They also have ways 2 modify toys & books with something called fanning with thick foam stickers placed on the corners. Sorry I can't provide u with any. I'm not sure how 2 move them here. Not 2 computer savy myself. My daughter just started using the assistive computer at age 3 but I do know a few other mothers with non MM kids that have started at age 2. Have a great day. I hope this can help. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1275588538/5#5 New Moyamoya.com Forum/2011 Moyamoya.com Reunion http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1275588538/5#5 Tue, 7 Sep 2010 01:20:38 GMT PHILLY and early June.....awesome, I just might "finally" be able to attend a gathering!!! Need to work it out with hubby....but this just might work! I am so excited : )<br /><br />Kids will have finished school and our annual summer overseas trip is usually booked for mid-to-end of June! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282686186/4#4 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282686186/4#4 Mon, 6 Sep 2010 23:23:03 GMT JD, <br />apparently Children's Hospital episode 11 had a wee lass with mm last night.<br />am trying to find it for you x http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283790693/1#1 New Moyamoya.com Forum/2011 Moyamoya.com Reunion http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283790693/1#1 Mon, 6 Sep 2010 22:06:22 GMT Wow! That's fantastic. One more reason to attend this next year's gathering. Just the prompt I needed to stop procrastinating and send in my registration. See you all next year. Kim http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283217044/2#2 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283217044/2#2 Mon, 6 Sep 2010 20:15:22 GMT thank you so much for the encouragement! There's definitely good, positive days and then there's the not so good ones.  Thank you for sharing your story too. I really appreciate it! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283803041/0#0 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283803041/0#0 Mon, 6 Sep 2010 19:57:21 GMT I am 51 and just learned in April of this year 2010 that I have MMD with 2 strokes and a lack of blood flow. Not only that but 3 aneurysms. I've had one aneurysm fix and they don't want to fix the others because of where they are. I do know of MMD  my daughter got MMD at age 9 in 1990. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246486528/4#4 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1246486528/4#4 Mon, 6 Sep 2010 19:48:06 GMT Just to provide an update, to those who expressed interest.  It has been awhile since I have been on here and wanted to let you know that my daughter did have her surgery.  We did go to Dr. Storm in Philadelphia and all has went well so far. My daughter had her surgery last Oct. and will go for a follow-up angiogram this Oct. to make sure everything was a success.  They determined that she only needed surgery on one side at this time and if all goes well with the angio. then hopefully, she will not need the surgery on the other side.  Please all pray with me that we will get positive results in October.<br /><br />Thanks everyone for your thoughts,<br /><br />Michelle <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=1280799462/7#7 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280799462/7#7 Sun, 5 Sep 2010 23:16:21 GMT I should have replied sooner but all went well with the flight from Youngstown,OH to Myrtle Beach SC. We were in the air for only a little more than an hour. I chewed gum on both flights and had no discomfort. I might add that the week of vacation at the ocean was very relaxing and much needed. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283713609/0#0 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283713609/0#0 Sun, 5 Sep 2010 19:06:49 GMT Last night I woke  up around 2am covered in sweat, so much so that all my sheets blankets, pillow were soaked.  I was wondering if this has happend to anyone else?  I just had my sugery three weeks ago, and never experince anything like this before it.  I'll be calling my Dr after the holoiday but in the mean time I am wondering if anyone else has expierince this? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279718473/10#10 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279718473/10#10 Sun, 5 Sep 2010 02:45:21 GMT Larry, So glad 2 hear u had a good week. Great 2 hear u had good stamina & strength. I hope next week is just as good or even better. Your Co workers sound alot like the guys my husband works with. Shop talk. Anyways thanks for the post. My daughter wears glasses & never thought about them being 2 tight. Very helpful info. Danielle http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282618262/3#3 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282618262/3#3 Fri, 3 Sep 2010 17:41:11 GMT Thank you so much for the advice. It was very helpful.  We r still waiting and can't make a decision. Adriana has had a hearing test done every year and it has always been normal. It was interesting 2 hear about the migraines, I have always been worried about it & with the lack of communication how would we know. She has never vomited or seemed sensitive 2 light so I'm beginning 2 think that's not it. Yes still looking into reflux, night terrors, allergies, & sleep apnea. I'll keep u posted. Thanks again, what would I do with out my MM family. Dani http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282594861/5#5 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282594861/5#5 Fri, 3 Sep 2010 16:53:19 GMT Good postings on Sodium levels.<br /><br />I too can 'feel' the effects of not getting (and/or flushing away) sodium. When I feel a need for sodium (good description KatieSD) I take a little table salt (just a little !) or some other salty food. I call it my potato chip therapy!  The balance of water to sodium seems to need frequent attention. <br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1273744800/17#17 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1273744800/17#17 Thu, 2 Sep 2010 23:43:27 GMT I am so happy for you that your sons surgery went well and your daughter does not have Moyamoya.  My daughter had her surgery when she was 15...only on the right side.  Every thing went well and we will monitor the lrft and deal with it when necessary.  Understand that your son may have some probelms with memory and moods after the surgery.  One thing the surgeons don't tell us is that it takes time for the brain to heal...even after the surgery area looks healed.  Your son has had brain trauma from the surgery.  Every one will be different but if he struggles with school or memory or gets upset easily it is understandable.  I wish someone had told us this so we would not have been so worried when school became a struggle the year following her surgery.  It has been 1.5 years now and she still has some issues.  She never had a stroke or a hemmorhage, we found hers because of all the headaches she had.<br /><br />The worst is over for now.  I hope this didn't sound too negative I just want you to be aware that he will still be healing even after he looks back to normal. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283096334/2#2 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1283096334/2#2 Wed, 1 Sep 2010 04:17:06 GMT Thank you for the reply. I guess I got to used to Tyler being OK. We just found out tonight that he is having seizures that paralyze his leg for up to 12 hours. Now to find out what changed to cause this sudden occurrence! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282774399/3#3 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282774399/3#3 Wed, 1 Sep 2010 03:36:44 GMT Dr Stephen Lewis at Shands Hospital in Gainesville has done quite a few Moyamoya surgeries.  He did my daughters surgery in December 2008 and he and his staff were wonderful.  He may have an associate that doesnthe pediatric surgeries.  If you can't get to Dr. Scott then I would see if you can get to Dr. Lewis as he is in Florida. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282783374/4#4 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282783374/4#4 Mon, 30 Aug 2010 03:03:47 GMT Thanks to everyone for posting a note on this.  My son has left shoulder pain and leg pains but has not been diagnosed with Moyamoya yet.  We have an appointment with the neurologist on Tuesday to talk about all his symptoms which are similar to my daughter's who had surgery for MMD in March.  His shoulder pain and periodic leg pain comes and goes without reason.  He has Down Syndrome and doesn't talk very much so it is very difficult to get the whole story.<br /><br />Thanks for taking the time to post.<br /><br />Corinne http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282499300/4#4 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282499300/4#4 Fri, 27 Aug 2010 12:10:23 GMT My son just had surgery for MMD in Boston with Dr. Scott. He was wonderful as well as everyone else at the hospital!!! Please let us know what he says!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282763693/2#2 New Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282763693/2#2 Thu, 26 Aug 2010 20:19:36 GMT Thanks for sharing Mary Grace - that was funny, and yet a good reminder to closely monitor our kids' on-line time.<br /><br />And I hear you about the DVR.  We have 150 hours available on ours, but between Scooby Doo, Wizards of Waverly Place, Zach & Cody (I HATE that show) and Hannah Montana, I'm lucky if I can squeek out enough space to record a Jeopardy episode or an occasional Law & Order for myself.   <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=1282466822/5#5 New Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282466822/5#5 Wed, 25 Aug 2010 19:05:39 GMT Happy 4 yr anniversary!!!! Each year that passes is such a sweet moment.It's also can bring back some really scary memories. So glad your doing well. I love your rainbow analogy beautiful... Your right this is a wonderful place with so many wonderful people.<br />Mary Grace http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281967025/3#3 New Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281967025/3#3 Wed, 25 Aug 2010 19:02:17 GMT good to hear from you again. I hope all is well.<br />Mary Grace http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1087298232/2#2 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1087298232/2#2 Wed, 25 Aug 2010 09:12:20 GMT hello, I hope Joe and Marie are both doing well. Our 7 year daughter has just been referred to GOSH, so its good to hear that they have a specialist surgeon there.  Michelle, we live really near falkirk - did your daughter have surgery, how have you found her care living in Scotland?<br /><br />Jackie - Katie's mum http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1277667990/1#1 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1277667990/1#1 Wed, 25 Aug 2010 08:59:06 GMT Hello, I really hope your daughter is doing well after her surgery.  My 7 year old daughter has been refered to Dr Ganesan at GOSH, did you meet her? How are you finding the after care? Its good to hear that there is a good surgeon in the uk, glad I found your post.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1208866215/4#4 New Moyamoya.com Forum/In the news http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1208866215/4#4 Tue, 24 Aug 2010 23:15:59 GMT Wow what a great article. I am going 2 check into this music therapy. It said the perfect candidate is one with damage to the left side of the brain. Adri can say a few small words but knows hundreds of words & there meanings. She just can't say them.<br />Great info. Thanks, Danielle http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279932828/5#5 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279932828/5#5 Tue, 24 Aug 2010 03:11:54 GMT Wow I never thought of that. I will have 2 check into that. Thanks for the info? Danielle http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282321417/1#1 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282321417/1#1 Mon, 23 Aug 2010 16:26:36 GMT Jingo,<br />Welcome to the family. I am sorry to hear you are having trouble finding the correct MM specialest doctor.<br /><br />I personaly would send your infromation to Doc. Stinberg in the USA. His contact info in under "Surgens with bypass experence" on this site. He has worked with many people on this site. <br /><br />i hope you can find the answer you are looking from and get the help you need,<br />Becky http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282186894/4#4 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282186894/4#4 Mon, 23 Aug 2010 14:32:59 GMT Shari, wow sunset to sunset. That's a full 24hr fast! I wasn't aware it was that lengthy! I imagine that would be hard for most "healthy" persons. Glad you choose to stay hydrated throughout. And yes, our sincerity is what matters most. Thanks for sharing! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1277252190/3#3 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1277252190/3#3 Sun, 22 Aug 2010 08:19:26 GMT Dr Rasmussen is a fantastic and highly qualified surgeon. I was actually going to do my bypass's with him, but decided if my Insurance allowed me to travel to Stanford (which it did) I would ultimately do my surgeries with Dr. Steinburg. <br />My husband is a physician at University and we scrutinized both the CC and University Hospitals from strict professional criteria! We scratched Univ and its surgeon quickly from our short list and was very impressed that Dr. Rasmussen was suggesting the very same surgical approach exactly, as that of Dr. Steinburg. It was "only" the volume of MM surgeries that tipped the scale in favor of going to Stanford. I feel both Dr. Steinburg and Dr. Rasmussen are great choices! Now, as far as your followup post surgery.....Dr Anthony Furlan was the head of Neurology at CC for over 25yrs and only 2yrs ago....he left to head the program at the University Hospital! He is world renowned and absolutely the BEST Vascular Neurologist in the Mid-West! I was his patient at CC and now I am his patient at University! <br /><br />So, in conclusion...CC has the best Neuro-Surgeon & Univ has the best Vascular Neurologist!<br /><br />Best Regards, Diane<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280797686/10#10 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280797686/10#10 Fri, 20 Aug 2010 03:56:30 GMT My pleasure Corrine!<br /><br />And you have so much on your plate. I am sorry for all the uphill struggles you have to endure. My husband is a Peds Cardiologist and I often hear about all these little ones having heart surgeries....then add MM to the mix! May God bless and give you the strength continue through special each day.<br /><br />take care....Diane : ) http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1150145514/9#9 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1150145514/9#9 Thu, 19 Aug 2010 15:14:23 GMT I definitely agree that there is a need for physicians to have base line knowledge of MM.  In my opinion, it is far too often mis/undiagnosed in the West, either b/c docs have never heard of it, or b/c all they know/believe is that it is a disease that affects primarily Asian patients.  It seems that at a minimum, neurologists in training could be better informed about the disease, and a screening tool developed, based on patients who present with specific symptoms.<br /><br />Even with my Asian child, treated by a Western  neurologist, he simply refused to believe she could have MM and was "surprised" when the diagnostic testing did indeed reveal that is what she has.  <br /><br />Yes, MM is a rare disease but I wonder...is it really all that rare, or just mis/undiagnosed so frequently that it appears to be a rare disease.<br /><br />Best,<br /><br />Jennifer<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281420051/5#5 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281420051/5#5 Thu, 19 Aug 2010 15:03:42 GMT Tish,<br /><br />Glad to hear that your daughter is doing OK.  Prior to her MM diagnosis, my daughter was diagnosed with focal seizures, but more than likely they were actually TIAs.  With her, she would scream & cry & lose complete awareness of her surroundings, so I never "got" how her neurologist arrived at the focal seizure diagnosis, b/c she did anything but stare off blankly into space.  Now, at 10 months post-surgeries, she is still on the Trileptal for "seizures" but hopefully after her angio in Oct we will be weaning her off that med.<br /><br />One thing to keep in mind regarding future surgeries our kids might require - anesthesiologists should be familiar with what my daughter's surgeon calls "moyamoya precautions" when adminsitering anesthesia.  As I understand it, these help to minimize the risk of strokes while under anesthesia.  <br /><br />In our experience, many/most anesthesiologists are not aware of these - I know the anesthesiologists at the hospital I work at were not aware of them, nor, arrogantly, did they care to learn about them.  That is why now, for any procedures my daughter has, we make sure to schedule them at the same Children's Hospital where her neurosurgeon practices - she & her colleagues have educated the anesthesiologists there.  <br /><br />Best regards,<br /><br />Jennifer<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282169351/1#1 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282169351/1#1 Thu, 19 Aug 2010 04:44:09 GMT I am glad you asked this question.  I don't think people realise how dangerous anesthesia can be for people with moyamoya.  Especially doctors that are not familar with MM.  <br />Most all anesthesia drugs causes everything in the body to slow down.  In order to do this, these drugs cause vasoconstriction.  The blood vessels constrict, heart rate slows down, breathing is slowed becasuse the muscles that allow us to breath are slightly paralized, blood pressure is lowered, and body temperature usually drops slightly.  <br />People with moyamoya walk a very fine line between blood pressure being too low or too high, vessles constricting just enough or too much.  Most peoples bodies can with stand these fluctuations but many with moyamoya can only handle slight fluctuations in heart rate blood pressure etc...  So, having an anesthesiologist who is familar with moyamoya and knows how to regulate medications to allow you to be sedated without going over board is really important.  <br />I have moyamoya and just had surgery less than two weeks ago.  I spent a lot of time with our anesthesia team teaching them about moyamoya and they took the time to research the disease as well.  They were extra causious, they gave me extra fluids before surgery to boost my blood pressure, they used an arterial line to monitor my B/P more closely.  They did a really good job.  I also spent the first night after surgery in the ICU instead of the surgical floor so that I could be monitored more closely while the anesthesia was wearing off, which can take a couple days.  This was a good thing for me because at about 3am by blood pressure dropped dangerously low.  Since I was in the ICU hooked up to monitors they were on top of it immediatly which may have saved me from having a stroke.  I live in a small town and my surgery was done at our local hospital, but since my surgeon, the anesthesiologist, and the hosptial nurses were willing to listen to me and do some research on there own my surgery was very successful.  We do not have a neuro department at my local hospital.  If I had developed any complications they would have had to transfer me to a hospital 4 hours away.  <br />I hope this answers your question.  If you have any other questions about this topic just let me know and I will try to explain for get an answer for you.  <br />Take care and God Bless!!!<br /><br />Tracie<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282019654/1#1 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282019654/1#1 Tue, 17 Aug 2010 12:21:32 GMT Fred, Michelle, and Jennifer,<br />Congradulations on another sucess story! stay in touch.<br />Becky http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282006881/2#2 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1282006881/2#2 Tue, 17 Aug 2010 12:19:28 GMT Congraduations!!! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279732083/10#10 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279732083/10#10 Tue, 17 Aug 2010 07:46:43 GMT My wife experiences Migraines frequently and takes all the above meds listed in all these posts.  Nothing really helps, Topamax seems to lessen the overall intensity of migraines.  On an average week, she has at times one day of relief.  We have tried pure O2 and it did seem to help for awhile.  Worth a shot!!<br /><br />Oxygen<br />The inhalation of 100 percent oxygen, via a tight-fitting mask at a flow rate of 8 to 10 liters/min for 10 to 15 minutes is dramatically effective for about 80 percent of those patients for whom this approach is feasible; oxygen is particularly effective for nocturnal attacks.  This mode of therapy, although recommended by Horton (1952) over 35 years ago, has only recently been substantiated by controlled trials (Kudrow, 1981; Fogan, 1985).  Oxygen inhalations may be repeated up to five times per day.  Sakai and Meyer (1979) have shown that marked cerebral vasoconstriction results from the administration of 100 percent oxygen during cluster headache attacks.   Whether this effect is direct or is mediated centrally has not been studied.   Oxygen also stimulates the synthesis of serotonin in the central nervous system (CNS) (Costa and Meek, 1974).<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281752258/2#2 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281752258/2#2 Mon, 16 Aug 2010 11:36:55 GMT Thanks PM sent... <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=1279829783/11#11 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279829783/11#11 Sat, 14 Aug 2010 15:06:27 GMT <div><div>I agree the awareness for MM needs to be out in the community. When people hear my story, I tell them about my MM symptoms and misdiagnosis. If they want more information I send them to this site. I have been lucky that the doctors that I encounter now are willing to learn about the condition and several of them have asked if I could write a book about it and try to get it into the medical textbooks. Now, as a student on the PHD program in Health Psychology I am going to spread the word among my classmates and professors. The more medical professions get involved in learning about it the better it will be that they can help their patients. I believe it should be something that radiologist need to study and learn too. Usually my scar on my head is the conversation starter especially when I pull my hair up. </div></div> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1278105796/2#2 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1278105796/2#2 Fri, 13 Aug 2010 13:20:40 GMT My Daughter Lindsey who has Moyamoya and Down Syndrome (surgery March 2010) was diagnosed with Sleep Apnea 9 years ago and uses a CPAP machine.  She does not go anywhere without her machine.  It has made a world of difference for her.  She did the sleep study and used the machine the 2nd night and she was sold.  She asked for a machine the very next day and has not stopped using it since.  She was diagnosed with obstructive sleep apnea.  Her airway is very small.  She also had to remove her tonsils and adenoids as well.<br /><br />I don't know how it ties to Moyamoya or if it does at all.  My son who has Down Syndrome also was also diagnosed with sleep apnea and can't us the CPAP.  It puts air in his stomach and is very painful.  He does not sleep hardly at all.  We are in the process of testing him for Moyamoya because recently he is having episode very similar to his sister.  <img src="http://www.moyamoya.com/public_html/yabbfiles/Templates/Forum/default/cry.gif" border="0" alt="Cry" title="Cry" /><br /><br />Good luck with your situation.  <br /><br />Corinne http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1211117070/5#5 New Moyamoya.com Forum/In the news http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1211117070/5#5 Fri, 13 Aug 2010 03:50:07 GMT Hello I have been recently diagnosed with this moyamoya disease. I'm going for surgery on August 17Th. I have tried to post a topic but I don't really know how to post. I believe in God! & he is my lord & saviour Jesus Christ. I think this is a trial and God is not going to put to much on me that I cant bear. So God bless you and your family. <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=1271939102/3#3 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1271939102/3#3 Thu, 12 Aug 2010 11:59:54 GMT Thank you for the post, I think it is wise to say molly had to have another Mri to make sure there wasent any damage(stroke,tia) caused from the artery closing. This says to me there is a chance of damage with progression. molly did not have any but it should be concidered... this came from Dr. Scott, just my opinion but thought you might like to know it is a possibility I do not have any stats on tne issue but would like any new info anyone gets http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1233801552/4#4 New Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1233801552/4#4 Thu, 12 Aug 2010 03:59:31 GMT We liked Dr. Scott and agreed with his suggestion to repeat the mri/mra.  So we did and now we are waiting to here the results in the morning.  VERY nervous, can't sleep.  Want to know but its been so nice not worring about it for a little bit.  Time to face the music I guess.  Thanks for listening.  Jeannine http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281372715/1#1 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1281372715/1#1 Tue, 10 Aug 2010 16:35:33 GMT Mary,<br />I hope the splint works out for Kathleen. Please keep us posted. The YouTube was great and informative.<br />Becky http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1071435355/23#23 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1071435355/23#23 Mon, 9 Aug 2010 07:23:09 GMT I was 39 years old and on the morning of May 10th I woke to a useless left leg and arm.  Up until this point I was quite healthy and had no health issues.  I went to my community hospital and called upon an old family doctor.  they found I suffered 3 strokes and I had a 7 to 8 millimeter aneurysm in the middle of my brain.  Ater a full week in the community hospital, none of the neurosurgeons could agree on a course of treatment.  that's when my miracle happened. Dr. Steinberg heard of my case from a colleague and offered to exam and treat me at Stanford.  I was extremely grateful and arrangements were made to transfer me to Stanford.   I was scared, but the night I got into Stanford a wonderful nurse told me I had the neurosurgeon I had was one of the world's best and I had little to fear.  Within hours of getting into Stanford, I finally had some relief in the left leg the feeling had begun to return and I was actually able to use it!! The next day Dr. Steinberg sent me home to recover from the strokes and get strong for the surgery.  Coiling the aneurysm wasn't an option, I would have to have brain surgery. I can't explain how nervous I was, but Dr. Steinberg was very confident and capable, I saw him twice before I agreed to this major surgery.  His team of Residents, Interns and nurses were amazing and just as competent as Dr. Steinberg.  Mid June I went into surgery and 7 hours later emerged.  Dr. Steinberg told me the anuresym was much  bigger then anyone expected and it was what caused the strokes.  He called it a giant aneurysm and that he had to use 2 titanium clips.  I was in the hospital for 4 nights, 5 days,  I was able to celebrate  my 40th birthday just a few weeks after surgery. It's been nearly 2 months since surgery and I am soooo thrilled to say that I have my life back!!! If you didn't know me before you would have no idea I went thru all of this.   How does one say thank you to an amazing surgery who saved your life???  saying thanks seems to pale in comparison.  Dr. Steinberg takes his work very seriously and I am beyond grateful for all he does.  I hope my story brings relief to some that are faced with a similar situation as I was.   http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1276639276/1#1 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1276639276/1#1 Sun, 8 Aug 2010 04:04:09 GMT Hi Jill,<br /><br />when did you all create the moyamoya center at Stanford University? How can I get involved in the center. Do you ever put up success stories of past patients of Dr. Steinberg's anywhere for people to read. I am one of those success stories. I could not dream that 5 years later I would be in a PHD program to study Health psychology!! It is amazing. <br /><br />love yassi http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1271554032/14#14 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1271554032/14#14 Fri, 6 Aug 2010 19:49:18 GMT The Xenon CT was my favorite test. Very happy that you're on your way, and wishing you a speedy recovery. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1140466782/5#5 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1140466782/5#5 Fri, 6 Aug 2010 04:56:39 GMT I totaly Love Dr Thompson and his staff Amy has been such a big help to me and my family the last year and a half. I ended up having to have an EDSA on the left side also on April 6th of 2009. If you need financial help U of M does have programs you can apply for if you ask any of his staff they will point you in the right direction and get you to the right people.  <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=1280374204/4#4 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280374204/4#4 Tue, 3 Aug 2010 16:34:25 GMT Katie,<br /><br />Thanks for sharing the link to your article.  <br /><br />I am so glad to hear that the Medicaid approval process has been expedited for you!  I have been thinking about you every day, praying that you would find that one person who would take an interest in  helping you - and it looks like you found him, and then some!<br /><br />Best wishes to you - I'll look forward to reading an update from you post-surgery.<br /><br />Stay strong!<br /><br />Jennifer<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280714255/1#1 New Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280714255/1#1 Mon, 2 Aug 2010 14:51:00 GMT  Is your family from the Albany area? We live in East Greenbush NY.My daughter had ehr surgery 8 yrs ago in Boston. It sounds like  Albany Med. has come a long way since then that's great to hear.<br />Mary Grace<br />mgrace5@nycap.rr.com<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279855781/7#7 New Moyamoya.com Forum/Patient Resources http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1279855781/7#7 Fri, 30 Jul 2010 06:15:09 GMT Great news Katie.<br /><br />Mark (Luca's Dad) http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280440933/1#1 New Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1280440933/1#1 Fri, 30 Jul 2010 03:43:37 GMT yes, my daughter had surgery in may of 2004 and we moved in july of 2004 out of state.  She also had a problem with one of her stitches and it took several months (about 4 or 5) to heal totally.  All is well with it now though.