Hi Jacquie,

You sound just like me when I first heard the words moyamoya. I think I just e-mailed DJ and said, HELP! His wise advice was to learn all you can about MM.

I wouldn’t even know how to begin to explain it all here in one post, and we’d have to know some information to get specific in your case. So, my advice to you is the same that was given to me, read all you can about MMD. Knowledge is power and it can save your life with MM. DJ has a wealth of information here on the website under

LINKS

. He has research, videos, and pictures to help you understand it all. Oh, and don’t forget all of his MM family here to help you with any questions as you learn or to give you our own experiences along the way that may help.

Briefly stated Jacquie, if you were diagnosed with MM, than you have abnormal MM vessels supplying blood to your brain because you have blocked arteries, therefore you are always at risk for a stroke. In another post you mentioned severe leg pain and blurred vision, this may be TIA's (mini strokes) or warnings.  If you have stroke like symptoms, you should not hesitate to seek consultation with a MM specialist ASAP. Delay with MM management could allow unnecessary progression of the disease. It’s been my experience here, seeing many doctors that do not have enough MM experience to know what is the best management approach to take in many of the cases, that’s why we advise a MM specialist, and that’s where learning about this disease will help you make the best decisions along the way. The only management for this rare disease is surgery, to get the proper blood/oxygen/nutients that your brain so desperately needs.

Anyway we can help you, we will. Please don’t hesitate to ask.

Mar

Hi Jacquie,
I've got MM and have had two direct bypass surgeries, both very successful. I also still have MM problems in an area that cannot be operated on, and I would consider myself fairly knowledgable about the condition, as far as any of us can be anyway. So I would be more than happy to answer any questions you have.

Basically Moyamoya is a condition where the bloodflow and oxygen flow to the brain is restricted. Medically it can be termed the "sponteneous occlusion of the Circle of Willis". The Circle of Willis is the "roundabout" of arteries and blood vessels that supply the brain.
Occlusion means progressive narrowing - the degree of narrowing is not the same for everyone though.
A stenosis is a narrowed section of a blood vessel, MM is usually diagnosed by a scan of the brain showing a stenosis/stenoses in the internal carotid arteries. These are the "main" arteries that supply the brain at the front of your head.

As these crucial arteries are narrowing, lots of small campilary "Moyamoya" vessels grow, in order to 'beef-up' the supply. And the MM term comes from their appearance on the scan.

There is no [known] cure for MM - meaning that the narrowing cannot be reversed. This is because the artery walls become weak and brittle as they narrow (for unknown reasons). Some doctors prescribe cerebrovascular (brain blood vessel) dilators, such as some anti-hypertension medications (blood pressure lowering), is is unsure yet as to whether this helps.

MM is manageable, relatively easily, by surgery. Introducing new bloodflow to the brain by either direct or indirect bypasses.
A direct bypass uses an artery from outside the skull (extra-cranial) and attaching it to another main artery on the brain (inter-cranial) and then an immediate blood supply is formed. Results are usually instantenous. The most common artieries used are the Superficial Temporal Artery to the Middle Cerebral Artery. So this type of surgery is termed EC-IC or STA-MCA.
An indirect bypass uses a muscle from outside the skull, transplanted onto the brain, then the blood supply from the muscle can take anywhere from 6-12 months to grow into the brain. This is called and EDMS [usually].

The type of surgery performed will vary patient to patient & surgeon to surgeon.
The direct bypass is more complicated and therefore more risky. It is usually used when there is a very urgent need for blood - for example if one or both internal carotid arteries are completely blocked. AND when there is a proficient surgeon.
An indirect bypass will often be used if the narrowing has not yet progressed very far.

Due to restricted bloodflow, strokes and TIA's are common with MM patients. Most people think strokes are caused by blood clots, but the definition of stroke is "failure of blood supply" so they can also be the result of the bloodflow not being able to reach it's destination [in time] due to narrowed and/or blocked arteries. The moyamoya vessels do help a lot with getting the blood supply there, and that's why a lot of people with MM can have a small stroke, then recover completely within short times.
If the arteries are very narrow, there can be a lot of pressure on the tiny little MM vessels to get the blood pumping around and it is therefore also 'common' for them to burst and bleed into the brain.
These two reasons are why it is very dangerous to leave MM un'treated'. -> ** When treated, you will barely [maybe even completely] know you have it anymore, cept from maybe an aspirin a day and looking after your fluid intakes. So it's good to keep in mind that it's a completely manageable condition. Many people on this board have their surgeries out of the way and cruising through life just like everyone else without special roadwork detours in their brains.

Apart from scary sounding episodes like strokes and bleeds, having MM is likely to cause symptoms such as fatigue, fogginess, reactions to extreme heat, headaches, tingling, confusion [esp when doing many things at a time - easily distracted] etc... this is all due to the body having such a hard time getting the blood around your brain, due to all the roadworks. Things move much slower.

Um that's enough of a speil for now... Do some research but mostly it's important to know YOUR CASE... And find a doctor with experience and one that you're comfortable with.

And ask questions here, everyone's wonderful!

XO
Emily

Jacquie~

Ditto to all of the above advice.
Please get decent medical help.
This mm thing is scary but it can be delt with. You've taken the first step!
I send love to you.

Linda (LA)

Thank you all for so much good information.  My best friend was diagnosis this week.  We live in a small town and basically the doctors have told her "you have it"  "we don't know what it is, what causes it or what you can do about it"  She will be going to shands in gainesville, fl on Thursday.  We hope to learn more there.  she has 100% blockage of both carotid arteries.  and suffered a "minor" stroke 2 weeks ago.

I was dx'ed in July with both coratids 100% blocked.
I finished both direct bypassed the end of August and am doing quite fine now.......actually, better than I would have thought! I am still quite fatigued as I have some recovery still ahead of me... but overall....I am doing great.

Emily....your post is super.....you really took the time to summarize MM.

Frankly, this site was wonderful....I just read and read....and then sought out 1st, 2nd and 3rd opinions.  I logged my adventures in my past posts.....if you want a personal perspective on all this, but the scientific/medical info here is very helpful.

good luck and good health....keep us posted....we are all here to help and support you.

diane : )

ok heres what I know, We sent films out to 7-8 surgeons ..........including Dr. Lewis and Dr.Steinberg.......... Dr. Steinberg is the only one that consulted with our neuro;oigist here in Michigan................Dr. Lewis did call us once but we set up a appointment  for him to call back and he never did.........as far as recover goes I believe it is 3 to 6 weeks