Is Moyamoya really progressive??

Something you will often read in the forums or on wikipedia, etc is that Moyamoya is a progressive disease.

Here is a study that was published in 2005 in Stroke journal that studies the actual rate of progression.

http://tinyurl.com/5wjuv5

They started with 120 patients that had been diagnosed with moyamoya disease over a 14 year period, 1990 to 2004. They wanted to study only the sides of the brain that did not have the bypass operation and so they found 23 patients with NO operations (46 sides) and 40 patients with a bypass operation on one side, they studied the other.

This created a pool of 86 sides all told and 15 of the 86 sides had progression. That actually occurred in 15 of 63 patients.

8 of the 23 patients with no operations and 7 of the 40 with operations on the other side.

You will see that of the 15, 13 were WOMEN, so ladies are at a much higher risk for getting Moyamoya and for its progression.

To those who are considering your options, I think this is pretty good information to have!

Let me point out something else that validates the "2 year cycle" mentioned below. The folks that had bilateral Moyamoya (on both sides of brain), the interval between onset (first symptom) and progression was 28 months on avg. See the quote below.

"The interval between their onset and disease progression was 28.4±26.3 months, ranging from 1 month to 8 years, and was significantly shorter in patients with bilateral moyamoya disease than in those with unilateral moyamoya disease."

The folks that originally were diagnosed with Moyamoya on one side, progressed to the other side in 4 of 11 patients. That occurred over a 36 month period on average.

"The interval between their onset and disease progression varied from 1.5 to 8 years (60.0±36.3 months). All of the patients were women."

Links!!

http://www.ninds.nih.gov/disorders/moyamoya/moyamoya.htm

http://neuro.wustl.edu/patientcare/clinicalservices/moyamoyacenter.htm

Want to participate in the Moyamoya study, see below!
http://clinicaltrials.gov/ct2/show/NCT00629915?term=Moyamoya+Disease&rank=1

http://en.wikipedia.org/wiki/Moyamoya_disease

Boston's Childrens hospital Moyamoya site!! Excellent FAQ
http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P0.html

Dr Steinberg, reputed to be an excellent surgeon for MMD!!
http://www.stanfordhospital.com/clinicsmedservices/coe/neuro/moyamoyadisease/default

Using Plavix treatment for kids with stroke (Moyamoya mentioned)
http://tinyurl.com/5h68eo

Moyamoya Two year cycle!!

One of the more interesting findings in this study is this fact:

"The duration from first symptomatic event to last symptomatic event (TIA or stroke) with medical treatment is shown in Figure 2A. Most subsequent events occurred in the first 2 years after presentation and 1 after six years."

This is what our doctor told us when we were first finding out about the disease and what our options were. (Surgery, treating with medicine, etc)

Of course you do not know where you are in that 2 year cycle, and that is one of the more scary parts.

Based on the rest of this study and the fact that those treated with medicine have a similar risk for another stroke as those operated on, we have chosen to not have surgery for now. If there is another stroke, we will reconsider it at that point.

Surgery does not "fix" moyamoya (25% DO see a reduction in MM vessels though!), but essentially creates another avenue for blood to get to your brain.

One of the most important things to know is how well your brain is profused (getting blood now) and there is some tests they can do to help you find this out. If it is not getting an adequate supply of blood, I believe surgery is the ONLY option to increase blood flow!

I hope this information is helping, please send me comments so we know the word is getting out there!

Latest studies on treatment of Moyamoya!!

I wanted to put a couple of quotes and links to Stroke Journal - a study that was published, it took place from 1996-2005. This should allow folks reading the thread to see the same thing the neurosurgeons are reading.

I would suggest anyone wanting to know more about Moyamoya search for that term on the Stroke website, you can read every published article there. http://stroke.ahajournals.org/

The data from this study and a previous one in Japan in 1996 show that folks with the bypass surgery are still at risk for stroke, with 14-17% of the group having them within 5 years.

For those who treated medically, and were corrected diagnosed via angiogram, during the same 5 year period had a stroke rate of 27%. http://tinyurl.com/5swcja [Published June 2006]

"In medically treated symptomatic hemispheres, the 5-year risk of recurrent ipsilateral stroke was 65% after the initial symptom and 27% after angiographic diagnosis."

"In surgically treated hemispheres, the 5-year risk of perioperative or subsequent ipsilateral stroke or death was 17%. This was significantly different compared with medical treatment after first symptom (P=0.02) but not after angiographic diagnosis. "

One benefit of surgery, is that 25% of patients will see a decrease in moyamoya vessels!!

"Moyamoya vessels, which are supposed to be responsible for hemorrhage, decreased in 25% of patients." http://tinyurl.com/6oujm5 [1996 study in Japan]

http://tinyurl.com/5e25d3 May 2007 study... 6 of 40 treated by surgery, 34 of 40 treated medicinally. 7 of 34 medically treated had event within follow pd, 20.5% Of the 6 treated with surgery, no events within follow up pd.

Information for folks with MoyaMoya

There are a few sites that are dedicated to the Moyamoya disease and I wanted to offer some alternative information that is not being encouraged in those locations.

http://www.moyamoya.com This is the site with the most information and a very active discussion forum but a fair warning to anyone interested in participating at that site. If you are not having immediate surgery you will be chastised and told you are crazy or don't love your family member with the moyamoya syndrome.

I hope to create an alternative site with full access for all members to write their own articles, publish them and participate in a more open atmosphere, free from personal attacks.

This is NOT to say that surgery is not a GOOD and VIABLE option for everyone with MMD (Moyamoya Disease) but that is not the ONLY option.

I will provide links to the absolutely latest studies which show the up to date figures about this disease, how folks are being treated and what their results are!! I believe that you should be able to make an INFORMED decision and I wish you the very best on your journey!