http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya.com Forum en-us Moyamoya.com Forum Sun, 8 Mar 2026 16:44:54 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=1577843610/1#1 Moyamoya.com Forum/Patient Resources http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1577843610/1#1 Tue, 3 Jan 2023 23:07:27 GMT This is a very late reply, but you will need to watch for ulcers. Asprin in even low doses will hurt children's stomachs. I think your Dr will also recommend Pepcid to prevent this. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1665357355/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1665357355/0#0 Sun, 9 Oct 2022 23:15:55 GMT Hello.  I was diagnosed with Moya Moya when I was 24.  I had several mild strokes in my early 20's and went misdiagnosed until age 24.  I had 2 surgeries, both my left and right side, in 1998 and 1999.  I was followed for a couple of years and then told I was "good to go".   I've since moved to a new state and do not have a neurologist here as I've never seen a need for one.  I'm now 48 and wondering if I should just "get a check up" or something.  <br /><br />Also, does anyone have any good data on life expectancy after surgery?   http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1649071639/0#0 Moyamoya.com Forum/Patient Resources http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1649071639/0#0 Mon, 4 Apr 2022 11:27:19 GMT If most people enrol in Medicare, they are typically choosing to leave an employer plan with which they have been satisfied for many years. Yet, all too often, I hear from people who received bad advice from their employer about their Medicare decision.<br /><br />Often, these people are unaware that it is not your company's benefit representative's responsibility to be well-versed in all Medicare rules.<br /><br />I had a customer last year who was 68 when he retired, but he had enrolled in Medicare at the age of 65. His company's benefits representative made some suggestions on what to do with his Medicare decision, which seemed like good advice at the time. It wasn't until he decided to retire that he realised it wasn't the case.<br /><br />Because of the actions he took, he lost his guaranteed issue rights. That also meant he had to go through medical financing to get the Medigap Plan he desired. He was fortunate not to have had any medical issues at the time, even though he would not have been acknowledged if he had.<br /><br />Medicare is complex, but there are two things you should be aware of so that you don't get bad advice.<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1133843685/20#20 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1133843685/20#20 Fri, 25 Mar 2022 19:16:30 GMT I just got diagnosed with moya moya in past year after I had a mini stroke ... I'm to the point where I can't have caffeine at all cause it makes me feel awful and like I'm bout to have another mini stroke ... I can have a drink sometimes but if I over do it i pay for it for several day ... I haven't really talked to anyone with moya moya so I'd love anybody to reach out ... I'm new to it and they wanna schedule for me to have brain surgery still http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1641957888/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1641957888/0#0 Wed, 12 Jan 2022 03:24:48 GMT One of the principal stuff to look out for is the trait of the internet site. If the website seems shoddy and untidy your sparkles must cross up, because if a big name is truly making the cash they are claiming to make, they ought to no longer have a hassle making an investment in a pleasant website builder or a professional who will construct them a clever internet site. After all, in case you're expected to chunk out a few $s then they ought to at the least have an adequate amount of regard that allows you to send you to a fitting internet site.<br /><br />A further characteristic to appearance out for is touch facts. They ought to have touch statistics on their internet site. The best aspect so that you can do is to contact them (no longer to purchase or join up with this system), but to notice how unexpectedly they react and how inclined they're to supply you particulars about anything they're supplying.<br /><br />Then, or simply one of the key stuff you have to do is to do a take a look at on whose[dot]com to find out who the internet site is registered to. Lots of agencies have their privateness protected this means that you cannot set eyes on their particulars. This is fair for precise sorts of agencies, however if it's a site that wants to promote you cash building e-books or some thing element to do with being profitable, they must be eager to be transparent and display who and wherein they are.<br /><br />An address is likewise proper, but thousands of those get wealthy short businesses have phony addresses. A in addition factor to appearance out for is their claims and memories. Does it seem to be honest or placed on? Do the humans come upon actual (if there are pix). How realistic is the claims? Is there an photo of the proprietor of the site who claims to take home all this wealth? Is there a video of the individual?<br /><br />Also, if you without a doubt need to acquire some money making e-book, attempt your fine to rather buy through Click bank, as you're assured you may get your coins again should or not it's a bunch of bs crap. One of the maximum critical activities is to do a seek on the software's call and the person's name. You can search absolutely the call, the call and the phrase (sc*m), call and (opinions), name and (make cash). Trust me, if men and women had been conned, they are going to permit recognize approximately it. If men and women misplaced cash they may be no longer gonna maintain silent, but you should additionally be open-minded while reading these posts.<br /><br />Some folks that are competitors will create posts with regards to a exclusive path and say that it's a scam and badmouth them. As a rule those human beings will post on sites where they are able to as nicely insert their internet site links to the post so it is simply publicity for them. If you find a submit wherein you've got a feeling that the character is without a doubt true, it perhaps is actual. There's an aphorism that asserts " If one character tells you you're a donkey, overlook it, but if ten people tell you you're a donkey, buy yourself a saddle."<br /><br />So if there are stacks of individuals who say the equal factor about a person or a program, you have to pay word and center your choices on that. With all this facts in thoughts, do you sense you may proper away be able to spot a legitimate possibility?<br /><br />Well lets see... This is a software that I am worried with. I would love you to test up on it and see what you find. If it meets the necessities, then you definately've just found the treatment in your needs.<br />However if you still want to search further, then have a look through my overview internet site. I actually have a group of wealth building applications reviewed. Take care and please do no longer link up with any program with out doing all of your take a look at first.<br /><br />See more read<br />latestdatabase.com/ghana-phone-number-list http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1635845802/0#0 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1635845802/0#0 Tue, 2 Nov 2021 09:36:42 GMT As a business proprietor, you understand how difficult, time-consuming and expensive can be to discover your online clients. Many agencies hire methods of direct reaction, like mails and telemarketing. By using those alternatives, marketers can quickly and without problems get in touch with their potential clients. However, these strategies can not be hired in the absence of the touch records, which enterprise electronic mail lists can offer. Companies always require the email addresses for sending their marketing messages to capacity customers.<br /><br />In case you are keen you obtain a mailing list in your enterprise, there are in general  alternatives for you. Of direction, one is to purchase any such list, and the opposite is to prepare one yourself. In case you make a decision to prepare one your self, you need to have the adequate manpower, sources, time and knowhow for gathering the maximum viable statistics. Other than that, you have to be prepared to make all of the amendments which might be important for retaining it up to date. That way, you can ensure that your facts isn't outdated. However, it might be profitable to add right here that, except you're experienced in making ready such lists, it can prove to be a daunting and volatile task. That's why maximum corporations are prepared to buy one.<br /><br />Though shopping an electronic mail database is useful and convenient, it can show to be volatile as nicely. How are you able to make certain that you did not pick the wrong source? If you get the incorrect listing, you will come to be with faulty consequences, as a way to be some distance below your expectancies. That is why it's far recommended you purchased your list from reliable providers, including a information center. Here are some of the benefits of buying from such assets:<br /><br />You get ultra-modern and accurate data. It is critical to hold correct contacts always. This requires regular updates, as records keeps changing often with none earlier observe. Efficient facts centers rent the manpower needed for doing the needful. So, you are confident of an accurate and up to date information.<br /><br />Information pertaining to all contacts is tested. Having collected the records, the records centers don't promote it soon thereafter. First, they set up the authenticity of their facts, so that it will make sure that each detail is legitimate and accurate. Their recognition is at stake, in the event that they offer the wrong facts.<br /><br />The facts middle crew is fashioned from researchers, information miners plus smartphone verifiers. Any person entrusted with information mining isn't always requested to carry the verification a part of the activity. Each character is given a exclusive and specific obligation.<br /><br />Another very useful feature of purchasing from professionally controlled information facilities is the fact that the consumers are entitled to get a substitute for out dated information without making any more payment.<br />When you need to get the first-class in your advertising group, your first step have to be to get the latest and accurate database of emails from a reliable database middle.<br /><br />See more read<br />latestdatabase.com http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1130535415/29#29 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1130535415/29#29 Sun, 2 May 2021 14:10:29 GMT I had both direct and indirect for hemorrhagic stroke and was diagnosed with MM as a result of the stroke in January. Had surgery in March 8. Almost 4 months after the stroke still drained and little visionary issues, as well as episodes of feels like flakiness. I’m also starting to see swelling again on the left side for some reason. Anyone know why that would be? I return to work tomorrow and I’m not happy about it. I have no choice. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1613246874/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1613246874/1#1 Sun, 2 May 2021 13:10:58 GMT I had a hemorrhagic stroke on the left side as well. January 19. My surgery was March 8. In-direct and direct surgery. When I was in the hospital at first for the stroke my husband and son told me I would only wake to vomit and go right back under for 4 days. Almost 4 months later and 2 months after surgery, I still have episodes during the day where I’m tired, weak, feel like I’m half asleep, have slight vision problems and feel a tiny bit loopy. I hope this changes. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1613932295/0#0 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1613932295/0#0 Sun, 21 Feb 2021 18:31:35 GMT Is there a good neurologist / neurosurgeon that can do  screening and monitoring over time for Moyamoya located in the Honolulu area? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1613932204/0#0 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1613932204/0#0 Sun, 21 Feb 2021 18:30:04 GMT Is there a good neurologist / neurosurgeon that can do  screening and monitoring over time for Moyamoya located in the Fresno area?   http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1612569632/0#0 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1612569632/0#0 Sat, 6 Feb 2021 00:00:32 GMT Anyone know anything about Dr. Dehdashti? <br /><br />I was just diagnosed with moyamoya and am desperately just looking for more information.<br /><br />He also suggested referring me to his colleague, Dr. Fady Charbel in Chicago<br /><br />Has anyone ever heard of these two doctors? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1118270370/7#7 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1118270370/7#7 Fri, 14 Aug 2020 12:37:24 GMT Many little factors ... http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334761454/6#6 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1334761454/6#6 Fri, 14 Aug 2020 09:16:51 GMT I am trying to relearn Spanish so I can pass the placement test in collage. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1289205640/2#2 Moyamoya.com Forum/Technical Problems for the Webmaster http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1289205640/2#2 Sun, 2 Aug 2020 23:00:48 GMT Hi guys! What other smart devices are you using for automating routine procedures? I love to read about the latest inventions. They seem to have endless potential. As a rule, I Find Necessary Smart Devices Easy on the 4prototypes.com site. And what is your favorite resource for shopping? Let’s share them in this thread so that everyone could find the best site. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1138975197/18#18 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1138975197/18#18 Tue, 28 Jul 2020 20:13:14 GMT Market research by Everest Poker found that students are the largest group of online poker players. In different countries, this figure ranges from 20 to 30% of the total number of online poker fans. Do you think bluffing skills can come in handy in the test? The money won is useful, that`s okay, you can use the services of professional essay writers for hire and order a professionally written essay from the &#1089;ustomwritings.com. How do you like this skill development among students? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1091739620/27#27 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1091739620/27#27 Thu, 23 Jul 2020 10:28:38 GMT I am willing to place an order soon if I can get more ordered.  I know I want about 10 too, some of our friends are going to buy some and put on their cars as well.<br /><br />Do you all like the color's I picked, and the wording?<br /><br /><br />I will email everyone back with my address of where to send the money, I just need to figure out the cost on mailing them all....we could include that in the 5.00 price and then just use whatever is left of that to go to Connie and then to the foundation. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1591734312/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1591734312/1#1 Tue, 14 Jul 2020 14:34:16 GMT unfortunately there's extremely little information about it online. i was also searching for it for my friend and i cannot find it. we're afraid that he may get Covid and we are afraid of the final outcome... if you find anything please update. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1244491053/12#12 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1244491053/12#12 Thu, 2 Jul 2020 22:47:46 GMT I believe the site is using poor hosting. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1412566379/2#2 Moyamoya.com Forum/In the news http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1412566379/2#2 Mon, 22 Jun 2020 10:54:44 GMT nice one Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1412566379"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1582948585/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1582948585/1#1 Tue, 9 Jun 2020 20:08:47 GMT Hi there Chris<br /><br />My daughter, Luca, stroked and was diagnosed at 10 months. She was operated on at 1 year old. She is now 12 years old and just an incredible girl. Inspirational. We live just outside Cape Town, South Africa<br /><br />How are you doing?<br /><br />Cheers<br />Mark<br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1590826155/1#1 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1590826155/1#1 Tue, 9 Jun 2020 19:57:55 GMT Hi there<br /><br />My name is Mark. My 12 year old daughter, Luca, is 11 years post-op. I haven’t been here for some time but the chaos period and earlier years are quite well documented on this platform.<br /><br />We’re in the Cape<br /><br />Cheers http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1266892033/16#16 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1266892033/16#16 Sat, 30 May 2020 07:39:40 GMT Greetings,<br /><br />Does anyone have any updated leads on research into this topic or some personal experiences, or stories, that they can share? <br /><br />Best wishes http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1590454758/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1590454758/0#0 Tue, 26 May 2020 00:59:18 GMT Hi all, I'm new to the site and looking for a little guidance during this confusing time.<br /><br />My baby sister (Now 12) had her pial synangiosis just a little over 3 years ago at Boston Children's Hospital (right side). All scans and everything since then have been great. She recovered so quickly and is truly so energetic and full of life.<br /><br />About an hour or so ago, I noticed that the left side of her mouth was drooping. Other than that, everything is perfectly fine. She is mobile and does not even notice the difference, though our mom and myself can see a difference. We've tried to contact Dr. Smith and anyone familiar with her case, but no luck due to the holiday. We aren't sure if it is a good idea to take her to the ER with the current Covid risk. I'm honestly unsure what to do. It's been so long since we've felt this fear and with the state of the healthcare system, we don't want to put her at extra risk. Does anyone have any ideas of what  we should do in this instance? Thank you so much. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1583657300/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1583657300/1#1 Sun, 8 Mar 2020 17:30:34 GMT Hi AllenSW,<br /><br />I've got a 6 y.o. girl with NF1-related MM in NJ, USA and I totally know how you feel about the "blessing in disguise". The child is seen at CHOP for NF1 who don't like annual MRI's for NF1 (unless there are symptoms) and MM was only incidentally picked up on a brain scan 3 years ago due to concerns over unremitting headaches. Since then she's had the EDAS op on the left hand side (Dr Feldstein at NYP) and all is well so far. NYP also won't operate on the right hand side but just monitor it and hopefully that won't get worse. Part of me wishes they could just operate on that side too and get it over with, but I know the reality is that unless there is some significant lack of flow, the operation itself is pointless!<br /><br />On your question; they've done the EDAS op on even in utero babies, so I doubt its due to age. Is she being seen by a MM specialist at Toronto Sick Kids? As long as thats the case I'd see little to worry about at all. Our CHOP Doc told us the NF1-related MM cases are a little different and the probabilities change significantly although she was clear that there wasn't much data around it. Generally, Toronto Sick kids will have seen quite a few cases like  this though so you can feel safe in their hands. If you wanted additional peace of mind though you can easily get a second opinion from Boston Children's Hospital for $500 who are the apex clinic for pediatric cases. Personally though if my child was being seen by a pediatric MM specialist at Toronto Sick Kids I wouldn't bother (I appreciate thats easier said than done with a new diagnosis).<br /><br />Good luck with it all; once you've caught it (which you have) and its being monitored regularly by qualified docs (which it seems to be)  the prognosis is excellent! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1583315189/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1583315189/0#0 Wed, 4 Mar 2020 09:46:29 GMT Greetings. Anybody with Moyamoya who had Radioactive Iodine Ablation for Thyroid Cancer? I've read about links to MM and other types of radiation, such as for brain tumors, so maybe thyroid radiation too? I'm in the process of getting tested for MM and I have always been suspect that my symptoms (muscle weakness, balance, tremors, slurred speech, fatigue, etc.) started after RAI. I've been misdiagnosed with Primary Progressive Multiple Sclerosis and other stuff. Thank you! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1162599762/11#11 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1162599762/11#11 Sat, 29 Feb 2020 13:44:22 GMT Greetings Kimberly<br /><br />Your postings are very encouraging to me as I'm just beginning this journey.  My son Willy, 40 yrs old, was diagnosed by Dr. Mericle yesterday with two clogged carotid Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1162599762"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a> and has a surgery scheduled for next week.  We don't know why the moyamoya condition was not discovered until he had a stroke on his right side a few weeks back.  Prior to that, all our recent attention was given to skipped heartbeats he experienced in the middle of the night and his BP shooting up.  <br />I'll just say hello now, as I want to get back to reading more posts.  Dr. Mericle will do 2 operations, and I'm sorry I don't know which at this moment, one next week and another later in the fall.  I'm very hopeful we've caught it in time and that he can begin recovery right away. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1582946325/0#0 Moyamoya.com Forum/Local Meetings and Gatherings http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1582946325/0#0 Sat, 29 Feb 2020 03:18:45 GMT Looking to connect with people who have Moyamoya to share knowledge and experiences. Thanks in advance http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1085970534/24#24 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1085970534/24#24 Mon, 10 Feb 2020 16:31:47 GMT We live in Opelika, AL.  We go to the Children's Hospital in Birmingham right now for everything.  I will look into these doctors you have recommended.  Thank you. <br /><br />Trey has had MRI's and an Angiogram.  They are basing the MoyaMoya diagnosis from the Angiogram.  As I stated, the neurosurgeon was not 100% satisfied with MoyaMoya from the Angiogram but all of the neurologist are.  So, now we are waiting for the neurosurgeon to tell us what he thinks based on the spec scan. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1258680066/11#11 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1258680066/11#11 Mon, 10 Feb 2020 16:31:15 GMT It is no secret that smoking doubles a persons chances for a stroke and strokes are the third leading cause of death in the US.<br /><br />Smoking is very addictive and extremely difficult to stop. My friends who are former smokers said it took them 3 or more attempts before they completely stopped smoking. One of my friends told me it took her 7 attempts to stop smoking. Today, there are more stop smoking products available to a smoker.<br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1576560592/0#0 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1576560592/0#0 Tue, 17 Dec 2019 05:29:52 GMT Hello everyone!<br /><br />Just curious if there are any MM meetups planned? I was diagnosed this year with bilateral MMD & had both sides (EDAS) done at Thomas Jefferson this year. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1552239157/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1552239157/1#1 Mon, 21 Oct 2019 21:41:37 GMT Sorry to hear that. How do you cope? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1571671223/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1571671223/0#0 Mon, 21 Oct 2019 15:20:23 GMT Dear all,<br /><br />does anyone know if there is a direct connection between Moya Moya and pancreatic cancer? Or does anyone know cases where MoyaMoya patients did experience pancreatic diseases etc.?<br /><br />Much obliged<br /><br />Dennis http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1571432613/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1571432613/0#0 Fri, 18 Oct 2019 21:03:33 GMT My wife had STA MCA surgery on Oct 8 at Stanford, performed by Dr. Steinberg. The surgery went off well and she was recovering well.<br /><br />On Oct 14th, her left hand went limp for a few minutes. We took her to the emergency at Stanford. She was monitored and discharged the same day. MRI the next day suggested two small strokes.<br /><br />The team at Stanford is not too concerned at the moment.<br /><br />Am interested to know if others have experienced similar events after surgery; <br />Did the episodes return and if so at what frequency?<br /><br />Understand every case is unique; but would like to know how common it is<br /><br />Thanks http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1470002163/4#4 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1470002163/4#4 Wed, 16 Oct 2019 18:00:34 GMT My wife had surgery at Stanford last week. She too was afraid to sleep on the side with incision. When asked, the team at Stanford said it was okay but we were not comfortable with that suggestion as they also keep bringing up not to wear glasses that press on the artery. <br />Best to err on the side of caution. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1570902659/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1570902659/0#0 Sat, 12 Oct 2019 17:50:59 GMT My wife suffered a stroke earlier this year and was later diagnosed with moyamoya. She has subsequently undergone surgery to restore blood supply.<br /><br />She occasionally describes hearing whoosh sounds that are rhythmic and lasts for minutes to hours. This has occurred prior to the stroke and since as well (both preop/postop).<br /><br />Curious to know if anybody else has had similar experience? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1564366986/3#3 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1564366986/3#3 Mon, 23 Sep 2019 00:34:37 GMT I strongly recommend you look into the HOME Apartments. They have a kitchen and the cost is based on your financial situation. It isn’t fancy but close enough to walk to your appointments. And everyone there is a patient so you feel a sense of fellowship all the residents. I think this link has contact information in it https://m.facebook.com/pages/HOME-Apartments-on-Welch-at-Stanford-University-Hospital/334383216605150 http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1568069502/0#0 Moyamoya.com Forum/Patient Resources http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1568069502/0#0 Mon, 9 Sep 2019 22:51:42 GMT First time poster, long time lurker. A year and three months ago, the love of my life was diagnosed with MMD. Thank you all so much for creating this forum and participating in threads here: it's one of the best resources out there. Reading your posts gave me strength many times in the past year.<br /><br />After a successful surgery on one side, he was supposed to go through the second one the day after tomorrow. However, he tested positive for MRSA, and the surgery was called off. The consultations and treatment for MRSA are not covered by his insurance.<br /><br />Did any of you ever experience such a situation? Did you find a way out? Do you have any advice?<br /><br />Thank you in advance for any and all replies! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1555169369/2#2 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1555169369/2#2 Mon, 29 Jul 2019 00:09:50 GMT Thank you. We met with Drs from both Northwestern and University of Illinois Chicago. Both surgeons we met were very patient and took time to explain the course of action. They were very deliberate in their suggestions and consensus was more imaging including angiography. The angiography eliminated a couple of possibilities and revealed blood flow deficiency in one side of the brain. Now the recommendation is a STA MCA. We have reached out to Dr. Steinberg at Stanford and can confirm that the staff there is very responsive. <br /><br /><br /><br /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1522805977/1#1 Moyamoya.com Forum/Surgeons with Bypass Experience http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1522805977/1#1 Sun, 26 May 2019 18:23:03 GMT How are you doing since it’s been a year.  Looking for some dr recommendations in the Cincinnati Columbus area. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1558887863/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1558887863/0#0 Sun, 26 May 2019 16:24:23 GMT Hello all - I had a Brain MRI last week and the report said there was concern for Moyamoya and CTA scan or MRA should be done for further evaluation.  I’m in the Cincinnati area and have my first neurologist consult on tuesday.<br />I want to go to the best and sounds like Dr Steinberg is it.<br />What is the easiest way to reach him? http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1495867262/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1495867262/1#1 Tue, 16 Apr 2019 15:45:29 GMT Saw this one in a website and thought this can answer the question: Up to 15 percent of Japanese people with moyamoya disease have one or more family members with the condition, indicating that the condition can be passed through generations in families; however, the inheritance pattern is unknown. Research suggests that the condition follows an autosomal dominant pattern, which means one copy of the altered gene in each cell is sufficient to cause the disorder. However, some people who have a copy of the altered gene never develop the condition, which is a situation known as reduced penetrance.<br /><hr width="40%" align="left" size="1" /><div>Chris | Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=login;sesredir=num~1495867262"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/login.png" alt="Login" title="Login" border="0" /></a> or <a href="http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?action=register"><img src="http://www.moyamoya.com/public_html/yabbfiles/Buttons/English/register.png" alt="Register" title="Register" border="0" /></a></div><br /><hr width="40%" align="left" size="1" /> http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1504066720/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1504066720/1#1 Sun, 10 Mar 2019 17:22:28 GMT There are many cases of dizziness, aphasia, head pain, etc. that cannot be "seen" on various imaging tests.  But doctors know that the tests have limitations. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1543678331/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1543678331/1#1 Sun, 10 Mar 2019 17:15:27 GMT The school has a legal obligation to evaluate her for special education services due to her health impairment. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1552055444/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1552055444/1#1 Sun, 10 Mar 2019 17:12:45 GMT Recently had a hospital neurologist tell me to try it - totally comfortable with it. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1542586641/1#1 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1542586641/1#1 Sat, 24 Nov 2018 03:13:35 GMT I think you should definitely push for testing that would show signs of Moyamoya. I believe it’s just an MRI but you could always verify that with the Moyamoya team at Stanford. They will review any MRI results you send them for signs of Moyamoya. I have learned too many times over the years that you have to remember your doctors work for you, and sometimes you need to take charge of your own health. You know your own body better than anyone and you should listen to it. If your doctor doesn’t want to do it, then fire them and find another that will. http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1488308902/2#2 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1488308902/2#2 Fri, 9 Nov 2018 16:27:37 GMT Thank you for this, Cherry! http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1521034083/10#10 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1521034083/10#10 Mon, 15 Oct 2018 14:41:40 GMT Thats great to hear willow! How old is your sister if you don't mind me asking? I'm curious if her age had any correlation with her recovery. Thanks http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1537836664/0#0 Moyamoya.com Forum/In the news http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1537836664/0#0 Tue, 25 Sep 2018 00:51:04 GMT Hi there, <br />My name is Shanti and I'm a journalist getting in touch from Talk to the Press. We are part of an international news agency and write for newspapers, websites and magazines in the US and Europe including Daily Mail, USA Today, Huffington Post, Inside Edition, New York Post and many more.<br />I hope you don't mind me posting here, and forgive me if I'm in the wrong place, but we would like to write about Moyamoya to raise awareness about the condition and I'm keen to speak to individuals who have been affected by it.<br />Everything will be handled sensitively and with care and with the intention of informing the public about a condition that rarely makes the news. If you or someone you know has had an experience with Moyamoya and would be willing to share it, please get in touch. <br />You can reach me on usnews@swns.com.<br />Visit our website, us.talktothepress.com/contact us, to learn more.<br />Thanks so much and hope to hear from you soon. <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=1534964292/0#0 Moyamoya.com Forum/Moyamoya Related Information and Support http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1534964292/0#0 Wed, 22 Aug 2018 18:58:12 GMT hi All!  i had indirect bypass 7 yrs ago on the right side with Dr Martin @ UCLA.  he has moved to John Hopkins.  i need surgery on the left side now.  i'm unsure if i'm going indirect or direct this time around.  my surgery is scheduled for 1/8/19 @ UCLA with Dr Wong.  he asked me to take Cilostazol 50mg x2 a day.  it's supposed to help with brain vascularization.  my 12 mo old son needs heart surgery soon so we are postponing mine until jan.  i think that's the only reason why he's asking me to take this drug.  i have 3 babies under the age of 2.  the side effects are drowsiness.  i can't really take care of the babies drowsy.  i'd love if anyone can share their experience with this medication.  sending lots of healthy vibes to all!!!   http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1533779645/1#1 Moyamoya.com Forum/Daily Jibber Jabber http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1533779645/1#1 Mon, 13 Aug 2018 15:12:27 GMT Greetings...... My name is Charles Coryn, and I'm William Coryn's father..... I've written many times over the years here, but I don't get back often.  I write today regarding the increasing Tinnitus symptoms that he is experiencing.  It has become a terrible distraction and is affecting his sleep also now.  I wish I could be of some help to you.... let me know if I can answer any questions.  William has had progressive problems, mostly from his original Rubella problem at birth.  He had heart surgery at 6 months of age, but the Moyamoya was never discovered. It wasn't diagnosed until he had grown and he was well into his thirties, when he had surgery on both sides of his head about 5 years ago.  Then about a year ago he was hospitalized following a stroke, and had a heart valve replaced, from which he's recovered well, and only within the last month or so has this serious Tinnitus happened.  I'm now searching for info and a specialist doctor in South Florida to treat him.  Willy lives in Lake Worth.  He had his surgeries done by Dr. Mericle in Nashville, Tn.  His recovery was broken by various other medical problems such as excessive acid reflux, and a 'bright lights' problem, I forget the name of it, photosensitive something, and now this.<br />I had moved to Tn from florida about 12 years ago and have great difficulty helping Willy at this distance away.  He's coming back up for an angiogram next month in Nashville I think.  Moyamoya is so rare that doctors always look confused when we mention it in their offices and in the ER rooms.  And as you likely know it's often difficult to get an interpreter when you need one.   <br />I regret this website doesn't get more traffic.  There is information on the web, some good info from Japan, but locally there are so few doctors familiar with Moyamoya.<br />Best of luck to you..... Let me know how you make out......<br /><br />charley coryn, Lancing, Tn.