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moyamoya and chest pain, anyone? (Read 4893 times)
charl
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Mother of a 18 year old
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potsdam, USA, usa, 473, 66, NY, New_York
Gender: female
moyamoya and chest pain, anyone?
Nov 25th, 2008 at 5:17am
 
my daughter has been having chest pain on exertion, well she has had it for a while. I just thought it was related to her anxiety and panic disorder. recently she said mom you need to do something this really hurts. Shocked I have known she cant do since surgery, but i thought it was the moyamoya,her blood flow was almost nonexisistent. I am just wondering if there is a connection. moyamoya is now listed as an occlusive vascular disease and not a cerebral vascular disease any more. Is there something we do not know? any help or opinion appreciated. Undecided
thanks, Amiee Molly's mom
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my now almost 19 year old daughter/sister have moyamoya
 
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Becky
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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female
Re: moyamoya and chest pain, anyone?
Reply #1 - Nov 25th, 2008 at 1:07pm
 
I would definatly make an appointmnet with her nurologiest. Let him/her know waht is going on. Keep a journal of any and all events that has happened and try to remember what she was doing at the time of the atack. I will pray for you and your daughter.
Becky
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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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heather
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halifax, Canada, usa, 550, 49, NS, Nova_Scotia
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Re: moyamoya and chest pain, anyone?
Reply #2 - Nov 25th, 2008 at 1:25pm
 
[b][b][/b][/b]


          hi  my daughter(18) who has moya moya also gets  pain on exeretion  or when even walking a long way so far nothing has showed up waiting now on a stress test  but echocardio showed nothing or ultrasound of heart either ...

     always feels like some thing new pops up no one has ever heard of ..  good luck .. and if i find out anything  exciting will send u a post

                                               Heather
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charl
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Mother of a 18 year old
with MoyaMoya!

Posts: 58
potsdam, USA, usa, 473, 66, NY, New_York
Gender: female
Re: moyamoya and chest pain, anyone?
Reply #3 - Nov 29th, 2008 at 7:20am
 
Thank you both so much. We do not have a neurologist.there is not one in the area. Heather you said your daughter is having chest pain as well? does she have anxiety,panic or ptsd? Does she have TIA,s? Alot of people are developing these problems after surgery. keep posting,
Tks, Amiee
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my now almost 19 year old daughter/sister have moyamoya
 
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Kevin
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Re: moyamoya and chest pain, anyone?
Reply #4 - Nov 29th, 2008 at 2:07pm
 
Hello, yes I am new to the forum and MoyaMoya.  My wife had a stroke back in 2005 in the final month of being pregnant.  Since then she has been having reoccuring issues every month or so during her menstral cycle mostly.  She has chest pain, then it moves up to her jaw.. eventually her arm, leg left side become very heavy after this event.  We've been thru many neurologists etc.  finally a Neurologist over the summer mentioned MoyaMoya, and all her symptoms fell in place with this condition.  She had the STA-MCA bypass last Tuesday and is recovering well.
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Mar
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Re: moyamoya and chest pain, anyone?
Reply #5 - Nov 29th, 2008 at 11:54pm
 
charl wrote on Nov 25th, 2008 at 5:17am:
moyamoya is now listed as an occlusive vascular disease and not a cerebral vascular disease any more.

Hi Aimee,

I’m sorry to hear your daughter is having chest pains and continued problems, she’s certainly been in my prayers, but I have to say, there are numerous other conditions a person could have that could cause chest pain and it may not necessarily be MMD. I’m not saying it is or isn’t, I would have no way of knowing, it's just a fact worth mentioning and perhaps worth looking into.

I am concerned about your statement that
“MM is now listed as an occlusive vascular disease and not a cerebral vascular disease any more.”
That’s a heavy duty medical statement. Could you please give us a reference for that shocking information?

Here is a current and reputable list of information about moyamoya, and in every single case it states that MM is a vascular disorder that affects the blood supply to the brain, and I can’t find where it even implies that MMD affects any other arteries other than the arteries to the brain. So I’m extremely anxious to hear who and where it’s stated otherwise???

Stanford, one of the largest MM centers in the world states: Moyamoya disease is a progressive disorder that affects the blood supply to the brain. Characterized by a progressive narrowing of the internal carotid arteries leading into the brain.

NINDS - Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain

Boston Childrens Hospital:Moyamoya syndrome is a very rare disease in which the walls of the internal carotid arteries - which supply blood to important areas of the brain.

Emedicine- Moyamoya disease is a progressive occlusive disease of the cerebral vasculature with particular involvement of the circle of Willis and the arteries that feed it.

Wikipedia -  Moyamoya disease is characterized by progressive intracranial vascular stenosess of the circle of Willis.

Brain anurism.com - Moyamoya disease is a condition where there is progressive blockage or occlusion of the ends of the internal carotid arteries and their major "terminal" branches in the brain.

Columbia University - Moyamoya disease is a rare condition in which the walls of the carotid arteries thicken and the arteries narrow, restricting or blocking the blood flow to the brain.

UCLA -Moyamoya disease is characterized by the closure of one or usually both internal carotid arteries in the intracranial region, resulting in the formation of a fine network of blood vessel growth at the base of the brain.

University of Hawaii - Moyamoya disease is a disease of the large cerebral vessels that results in a network of small collateral vessels that form a pattern on angiography resembling a "puff" or "hazy cloud" of smoke.  

Mar
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charl
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Mother of a 18 year old
with MoyaMoya!

Posts: 58
potsdam, USA, usa, 473, 66, NY, New_York
Gender: female
Re: moyamoya and chest pain, anyone?
Reply #6 - Nov 30th, 2008 at 10:48am
 
Mar, I did not mean to make a medical statement. I am sorry you feel the need to correct me and others on this site. I did not mean to insinuate it is not a cerebrovascular disease, only that the definition might be changing because of numerous other occlusive problems associated with moyamoya. I do not like to feel attacked on this site. i am just trying to help others just like you.  I recall a man on here who's son they thought had messintaric occlusion and he was not treated well and felt very unwelcome here and to my knowledge is not here any more!! This is unfortunate for us not to have the wisdom and life experience of knowledge he might have provided to this site,... that may have helped someone else here. This disease has unknown prognosis(to myknowledge) it is too rare and the profesionals are learning daily,monthly, yearly. I am again sorry, i did not mean to make a medical statement, i came across this while trying to decide what to put on a medical bracelete and thought i would share.
Again sorry, Amiee
Here are a few sites i looked at:
http://www.google.com/search?hl=en&rlz=1T4RNWQ_enUS290US291&q=moyamoya+occlusive+vascular+disease&start=10&sa=N

Off-Pump Coronary Artery Bypass Grafting in Moyamoya Disease
443k - Adobe PDF - View as html

Moyamoya disease is an occlusive intracranial arteriopathy ... asymptomatic moyamoya disease. We ... risk of brain ischemia in moyamoya patients, but OPCAB may ...
www.eymj.org/2007/pdf/10876.pdf
WEB RESULTSNeurovascular News Winter 1996 ~ MGH Neurosurgical Service

Moyamoya type changes have been found in a variety of diseases, including sickle ... Cerebral angiography is the cornerstone of the diagnosis of moyamoya syndrome. ...
neurosurgery.mgh.harvard.edu/Neurovascular/NVNwin96.htm - Cached

11. Nursing issues in caring for children with moyamoya vasculopathy and their families.
Match Strength: 13.633

Moyamoya vasculopathy is a rare, progressive neurovascular condition that may cause recurrent transient ischemic attacks, ischemic strokes, hemorrhagic strokes, or neurologic decline in children. Children with moyamoya disease have no clear contributing etiology, but children with moyamPrevalence of Stenoocclusive Lesions in the Renal and Abdominal ...
Moyamoya syndrome and primary pulmonary hypertension in childhood. ... Renovascular hypertension in moyamoya syndrome: therapeutic response to ...
www.ajronline.org/cgi/content/full/183/1/119 - 88k

moya syndrome have contributory diagnoses such as Down syndrome or neurofibromatosis. The concerns and lived experiences of children affected by this disease and their families have not been well explored or addressed in the nursing literature. Nurses who understand this lived experience increase their own ... Read More »
» Published in J Neurosci Nurs. 2007 Feb;39(1):33-9.

Huh
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my now almost 19 year old daughter/sister have moyamoya
 
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Mar
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Re: moyamoya and chest pain, anyone?
Reply #7 - Nov 30th, 2008 at 12:18pm
 
I’m sorry you feel as though I was correcting you or anyone for that matter. I’m learning like everyone else and simply trying to keep the information as accurate as we can when supporting other members and their families with this disease. I and anyone else in search of the facts and knowledge about this rare disease simply want all the accurate information we can get. It saves lives.

I certainly didn’t attack you, I simply asked for a reference to your statement, so we all could learn, and I gave you the information, as I know it to be to date. This is an information and support board and I’ve only ever given you all my support, the knowledge I’ve learnt about MM and my prayers.

We all will continue to learn all we can about this disease and hopefully help others.

Mar
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