Moyamoya Disease
What is Moyamoya Disease?
Moyamoya disease is a rare cerebrovascular disorder that is caused by blocked arteries in the basal ganglia, an important part of the brain that is associated with the regulation of motor control. Moyamoya typically affects children, but can also occur in adults.
In children, the usual first symptoms are strokes, or recurrent transient ischemic attacks (TIA), also known as “mini-strokes”. Muscular weakness, paralysis, or seizures often occur as well. Adults often experience hemorrhagic strokes due to recurrent blood clots in the blood vessels. Other symptoms include disturbed consciousness, speech defects, sensory and cognitive impairments, loss of motor control, and vision problems.
Moyamoya disease is a rare cerebrovascular disorder that is caused by blocked arteries in the basal ganglia, an important part of the brain that is associated with the regulation of motor control. Moyamoya typically affects children, but can also occur in adults.
In children, the usual first symptoms are strokes, or recurrent transient ischemic attacks (TIA), also known as “mini-strokes”. Muscular weakness, paralysis, or seizures often occur as well. Adults often experience hemorrhagic strokes due to recurrent blood clots in the blood vessels. Other symptoms include disturbed consciousness, speech defects, sensory and cognitive impairments, loss of motor control, and vision problems.
Originally, Moyamoya was thought to only affect people of Asian descent. However, cases have been emerging from people of many nationalities. Incidences of Moyamoya peak in two age groups: when children are approximately 5 years of age, and adults in their mid-40s. It is nearly twice as common in females as in males. Of all pediatric cerebrovascular diseases in Japan, Moyamoya is the most common one, with approximately 3 cases per 100 000 children. There are 0.086 cases per 100 000 Americans.
Genetic factors appear to play a major role in Moyamoya. Associations with loci on chromosomes 3, 6, 8, and 17, as well as specific HLA haplotypes, have been described.
Of particular interest is the genetic link between enzyme regulation and the abnormal levels and activity of related proteins. An example pathway undergoing studies is the possible mutation of TIMP-2, a regulator of matrix metalloproteinases.
| Name | Description |
|---|---|
| Transient Ischemic Attacks (TIA) | Transient Ischemic Attacks (TIA) are transient strokes that last only a few minutes and occur when the blood supply to part of the brain is briefly interrupted. |
| Cerebral Hemorrhage | Cerebral hemorrhaging is bleeding inside the brain, between the brain and the membranes that cover the brain, between the skull and the covering of the brain, or bleeding between the layers of the brain's covering. |
Moyamoya is most frequently diagnosed with MRI scans, MRA scans, or CT scans. However, these methods do not allow for doctors to design a surgery plan. By taking a cerebral angiogram, a map of the carotid arteries can be seen. Doctors are able to visualize the extent to which the blood vessels in the brain have narrowed, and see the new, thin vessels generated by the disease.
Moyamoya is typically treated with revascularization surgery, which opens narrowed blood vessels to restore blood flow to the brain. The surgery is more common for children, although it has shown to be effective in both children and adults. Depending on the neurologic impairment, occupational therapy, physical therapy, cognitive therapy, and speech therapy may be considered as part of the rehabilitation process.
If treated properly, the long-term outlook for patients with Moyamoya Disease is good.
Last updated 20 Jan 2019, 03:08 AM
Last updated 23 May 2015, 09:57 AM
23 May 2015, 09:57 AM
Thanks Claris, I am active in both Moyamoya.com and the Moyamoya Facebook site set up by Tara McInnes in the USA. No one my age. I live in Canada. I am hoping that if I use enough different forums, I might connect! ...although I note that this forum is not very active. Take care, Pat
22 May 2015, 05:47 AM
Hi PatriciaH, I don't know of anyone but perhaps check out Moyamoya.com and see if you can reach out to any members there? Best wishes, Claris
21 May 2015, 12:08 PM
Hello...any older adults with Moyamoya? I am 72 and recently diagnosed...would appreciate anyone older with MM.
Last updated 25 Aug 2014, 09:46 PM
25 Aug 2014, 09:46 PM
I was my neurosurgeons first Moya Moya patient, if I had know that before surgery I would have went somewhere else. Was done 11-26-12 at St. Louis University Hospital. Second stroke in 6-2013 had second right sided surgery on 11-12-13 by Dr. Steinberg at Stanford, 6 month post testing showed I still have blood flowing to my brain, instead of pre-surgery neg. flow.
28 Feb 2009, 04:24 AM
Hi there! There is a Moyamoya center at Stanford University that is headed by Dr. Steinberg who is the chief neurosurgeon and also does research on the disease. I have heard many good things about him. I myself had my surgeries performed in Berlin, Germany (I live in the U.K. now) and the Dr. there also researches the disease and has a lot of experience with Moyamoya patients.
14 Dec 2008, 12:44 AM
I live in Nashville Tenn. And recently went through both sugeries on both sides of the brain. There is a excellent Dr. @ Vanderbilt Medical Center who is well experienced in treating Moyamoya and his name is Dr. Robert Mericle..what a name huh? And he truly is a miracle. My first surgery was 15 1/2 long. I went straight to intensive care and came home 2 days later..My head wasn't even shaved only a partial cut that he needed to do for the surgery. 1st surgery was on 10/23/06..most recent 6/2/08. No major complications whatsoever. I would recommend this Dr. to anyone with MM.
Last updated 7 Mar 2011, 08:43 PM
7 Mar 2011, 08:43 PM
Hello everyone! I just wanted to share that yesterday (March 11, 2011), I ran a Half Marathon in 2hours and 50minutes....I know, not exactly the best finishing time, but the point is, I did it and I finished running 13 miles! This means that guess what? I believe that you all can do ANYTHING you set your mind to. Be confident, be happy and be true to yourself and go for your dreams and goals!!!
Last updated 9 Aug 2010, 01:18 PM
9 Aug 2010, 01:18 PM
Hello Everyone! I am also a member of Moyamoya.com (you should sign up if you are not already) and the creator of the site has made an agreement with Dr. Steinberg of Stanford and Dr. Scott from Boston Hospital. A new Moyamoya.com Sponsor T-shirt is being sold on the website and 30% of the proceeds will be donated towards each of the hospitals (15% each) for Moyamoya research. Please send this out to as many people as you know to help raise money for this! I have already bought my shirt =) Have a great day everyone and I hope you are all doing well with managing your disease! http://www.moyamoya.com/khxc/index.php?app=ccp0&ns=prodshow&ref=sponsort Sincerely, Claris M. Diaz
Last updated 28 Feb 2009, 04:20 AM
28 Feb 2009, 04:20 AM
Hi, I agree as well. I had my 1st surgery Oct. 0f 08 then the second, which was also MUCH MUCH harder Nov. of 08. I am also still recovery from the second surgery. And yes, I have been quite depressed since. I've been having a lot of ups and downs, days when I feel like I can get through it, and other days, when I just want to give up.
16 Dec 2008, 04:39 AM
Eileen, I myself had my second brain surgery in June 08, I also suffer from depression. I think some of it is normal. My Dr. has told me so. The body goes through so much. Do you also have seizures if I may ask? I hope you have or are starting to heal by now. I wish you all the best. My Dr. also says the second surgery is almost always harder than the first. I know it was for me. I was in the hospital for 2 days for the first and the surgery lasted for 15 1/2 hours. This last one I was in the hospital for a week, and I am still recovering 6 months later, slowely but surely. God Bless You.
12 Dec 2008, 12:07 PM
i have had moyamoya since may 08 then i had brain surgery i've been always depressed is that normal?
Last updated 17 Dec 2008, 03:57 PM
17 Dec 2008, 03:57 PM
Hi Everyone, My name is David Isserman and I am one of the co-founders of RareShare. I just wanted to quickly welcome you all to the Site. If you ever have any questions about RareShare or suggestions on improving the Site, please feel free to contact me at david@rareshare.org. David
| Title | Date | Link |
|---|---|---|
| Moyamoya: The rare disease you've never heard of | 01/20/2019 | |
| 8-year-old Camryn Kellam Beating Back Blood Disease, Rare Brain Syndrome | 08/22/2021 | |
| A 28-year-old woman thought an old shoulder injury was flaring up. She was actually having mini-strokes due to a rare brain condition. | 02/12/2023 |
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Hello, I am a 2x brain surgery survivor and also a MoyaMoya disease survivor.
I am currently doing great and would love to get more involved in the Moyamoya community.
I am also an avid Facebook...
Hello, I am a 2x brain surgery survivor and also a MoyaMoya disease survivor.
I am currently doing great and would love to get more involved in the Moyamoya community.
I am also an avid Facebook...
Hello. My name is Raymond Sinsay. I am Filipino-American male, Moyamoya Disease survior. I am about 40 years old and was diagnosed when I was about 37. I suffered a massive stroke...
First ischemic stroke at age 36 in Feb. 2006, 3 months to be diagnosed, several TIA's. After 6 years and graduating from nursing school with my BSN & passing NCLEX on first try, was told I...
I use to be a cheerful person working in a day care taking care of children. After my 5th miscarriage currently have no kids of mine got diagnosed with Moya Moya on top of...
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See Disorder Resources for link to BBC video on Moyamoya.
Created by RareshareTeam | Last updated 20 Jan 2019, 03:08 AM
Any recent posts?
Created by PatriciaH | Last updated 23 May 2015, 09:57 AM
anyone with this disease?
Created by shar808 | Last updated 25 Aug 2014, 09:46 PM
You can do ANYTHING!
Created by cmondiaz | Last updated 7 Mar 2011, 08:43 PM
Raise Funds for Moyamoya Research
Created by cmondiaz | Last updated 9 Aug 2010, 01:18 PM
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Created by biotechguy | Last updated 17 Dec 2008, 03:57 PM
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