Aloha All~

I am re-posting Soccer man Sam's reply to my post as I believe it may be overlooked and should be in a thread of its own.

I hope we can provide support, info, etc. to Soccer man Sam.  [smiley=hug.gif]

Thanks,
Shan
« Reply #11 on: Jul 18th, 2008, 6:57pm »  Quote  Modify  

my son has been having stomach problems the last few months.  He is on coumadin, aggrenox, and 2 baby asprin a day.  They thought it was his gall bladder, then they did a CT angiogram and discovered that he actually has moyamoya in his bloodvessels in in bowels.  They are trying to figure out if they can do a bypass surgery to supply more blood down there.  The Dr's have not found anyone else with moyamoya anywhere else but the brain, so this is causing delay in surgery.  Has anyone else heard of the disease being found in other parts of the body?

Sam,

The first thing that came to my mind after reading your reply to my post was if the Anticoagulants your son is taking have affected his gastointestinal system? I am personally taking Aggrenox, 325 mg aspirin and 1000 mg Niacin daily--all of which have contributed to me now having gastritis.  :-[  Nonetheless, I know that it is necessary for me to be on this regime to ensure my blood is kept thin.

I am not sure if  you have already addressed the following questions in previous posts, but I am interested in your son's newly diagnosed condition and am wondering if...

•  Has your son been diagnosed with MM in his brain as well?
  
  
•  What symtoms does your son experience?
  
  
•  What tests did his medical team perform to determine he has MM in his bowels?
  
  
•  Have you seeked additional medical opinions from MM experts?
  

Hope others may be able to reply and offer their advice, opinion, etc.  You'll be in our thoughts and prayers...

Take care,
Shan

Shan,

You ask some good questions, but I would suggest Sam query his son's doctors to see how they came up with the diagnoses of "moyamoya".

Every single definition for moyamoya I've seen since the day I was diagnosed has had the words "cerebral", "cranial", "brain" in it.

Obviously, I'm not a doctor, but I wouldn't think a diagnoses of moyamoya would go along with vessels in the bowels.  I would think blockages in those vessels would have a different diagnoses and I would hate to even try to guess what that might be.

Not that Sam isn't welcome here, but I would hope he would seek a better diagnoses for his son.  It's kind of like looking for support for a runny nose when you have a compound facture in your leg.  Doesn't quite make sense.

Just my [smiley=twocents.gif]

DJ

um a kid i know in qld, australia, his dr's in sydney said he had moyamoya in his kidneys (or thereabouts) he recently had left and right sta-mca's (brain obviously) and seems to be fine... but it was diagnosed originally through kidney problems... i never did really understand the kidney/moyamoya references....

i would normally define moyamoya as "the spontaneous occlusion of the circle of willis"... a "cerebrovascular condition"... etc....

however...

if blood vessels (particularly large arteries) are occluding progressively, and the "puff of smoke" is seen through developing small capillary vessel networks, then perhaps this can occur elsewhere in the body than the brain really?

thoughts......

Definitely Emily, I would think there could be a development of small capillary vessel networks in many places in the body, but that doesn’t mean it’s moyamoya, but perhaps one of the MANY other vascular disorders. Collateral growth is common with heart disease, but again, that doesn’t mean it’s MM.

I agree with DJ, the MM definition is of the BRAIN.

[smiley=twocents.gif]

Mar

Thanks for everyone's replies.  Good to see other's perspectives.  ;)

Sam,

If you don't mind providing us more info, I'm sure it'll help us understand more of what your son is experiencing.  As you can see, your reply has caught the interest of many of us--and I'm sure many would like to know more about your son's diagnosis which his doctors have advised you is MM.  Thank you for sharing your situation with us.

Hope to hear from you.  ;;D

DJ--
I'm guessing that his medical team may see "similarities" with his son's situation and MM; however, as with what Mar stated, although it may involve "collaterals"..the condition is not classified as MM.  I'm torn with this as I am happy that his medical team even knows what MM is--yet--to be misdiagnosed can be detrimental as well. (see my post in JJ)

Take care,
Shan

I did the genetic studdy and they said I don't have MM, BUT I still have small vesscels in my brain unilaterly. They still monitor me like I have MM and I have to take the precautions like if I have MM. I am claisifed as having MM as far as my doctors are concerned. The genitic studdy is still looking into to seeing if I may have another kind of mutation of the MM they havent found. Any way I just also hurd my grandma has narrow and small brain blood vessels in her brain and she didn't know the name of the diease they called it. I can't seem to find anthing on the internet. All the internet points to is MM in the brain.

There are other body parts that get narrow vessels like the legs. I would find a bowels specialest. I will pray for you and your son. Good luck.
Becky

Shan wrote on Jul 22^nd, 2008 at 1:16pm:

to be misdiagnosed can be detrimental as well.

Very well stated Shan!

:)

Hello everyone!
    Before I was diagnosed with MM my kidneys were checked with a Renal Angio.  The Internist thought the kidneys were making my bloodpressure spike.  I have small stenosis in and around my kidneys.  He diagnosed
Fibro-Muscular-Dysplasia.  I tend to go to the restroom quite often.  My husband jokes that I know where every restroom is no matter where I go.  Too much soda pop tends to make it worse.  I also have Livedo Reticularis (?)  Maybe it is similar to MM?  It is all vascular, right?
                    Hugs to y'all  MMers! MMnewtUt   

Hello all, thanks for moving my reply and others answering it.  My son DOES have Moyamoya.  He has had 4 different brain surgeries, the last two by Dr Scott in Boston.  
In reply to the bowels, I know that MM is in the brain, that is what is confusing the Dr.s because the test they have done, especially the Angiogram shows something in his bowels off his Aorta that looks just like moyamoya.  If MM was not "just" a brain disease, then I would say that was it, but so far they don't have a clue what it is, but are planning on doing a bypass of the area just like in the brain.  
My question in the last thread was "has anyone else experienced similar MM type symptoms in other parts of their body?"