MoyaMoyaInfo

New Method of detecting Moyamoya !

2010-11-11T14:05:00.002-05:00

Let me try to put this into plain English, there is a method to detect if someone has MMD. Previously they would need to do the radiological analysis, I think angiogram is the right word, where they go up and take pictures/MRI, etc.

Basically these folks are studying the cerebrospinal (spine fluid from brain area?) fluid and they found some indicators that are common in folks that already diagnosed with MMD (that are NOT found in those who do not have MMD!)

What does this mean? In theory this provides another method of diagnosing the disease AND it also helps them to find out what causes the issue in the first place!

I am not sure there is really a benefit currently for potential patients unless this is less intrusive than the standard angiogram type of tests? (I believe spinal taps to get fluid is very painful procedure?)

Ok, enough of me, here is what they had to say...

http://7thspace.com/headlines/362998/identification_of_novel_biomarker_candidates_by_proteomic_analysis_of_cerebrospinal_fluid_from_patients_with_moyamoya_disease_using_seldi_tof_ms.html

Identification of novel biomarker candidates by proteomic analysis of cerebrospinal fluid from patients with moyamoya disease using SELDI-TOF-MS

Author: Yoshio ArakiKazuhiro YoshikawaSho OkamotoMasaki SumitomoMikio MaruwakaToshihiko Wakabayashi
Credits/Source: BMC Neurology 2010, 10:112

Results: A statistically significant number of proteins (34) were recognized as single biomarker candidate proteins which were differentially detected in the CSF of patients with MMD, compared to the control patients (p<0.05).>Two important biomarkers could successfully classify the patients with MMD and control patients.

Conclusions: In this study, several novel biomarker candidate proteins differentially expressed in the CSF of patients with MMD were identified by a recently developed proteomic approach.

This is a pilot study of CSF proteomics for MMD using SELDI technology. These biomarker candidates have the potential to shed light on the underlying pathogenesis of MMD.

Good News!!

2010-10-01T13:16:00.004-04:00

We went though the second CTA scan (1 per year since original diagnosis after her stroke.)

This year there was no significant changes (closures)!!! In fact the scan appeared to indicate she has GREATER blood flow than she did a year ago!!

This is without surgery, simply taking her blood thinners!!

Now as always, her doctor said she had "enough" blood flow at the time of original diagnosis and that we could choose which path to follow and she wanted to just avoid the surgery if possible.

If your doctor says there is not enough, please do everything possible to increase that blood flow, that is what the surgery is there for!!

Just one other happy thought to leave you with!! Her Doctor, who did his fellowship at Washington University (St Louis - http://www.mir.wustl.edu/research/internal.asp?NavID=707) told us 2 years ago, that the current research appeared to show a limited "growth cycle" or progression if you will of the disease.

This is NOT published fact, but early findings and it seemed to indicate a possible 2ish year window of growth/progression and then it slows considerably!!!

I have mentioned this in other posts where I found collaborating research, so hopefully we are past that window!!!

As always, thank you for your support!!!

Just a quick note, I subscribed to the comments but for some reason they do not appear to be showing up on a timely basis. If you leave a comment and it is a long time before I respond I apologize. We are doing our best to contribute AND retain privacy as much as we can, thx!!

2010-10-01T13:11:00.002-04:00

http://stroke.ahajournals.org/cgi/content/abstract/41/8/1610

Regions of steal phenomenon are spatiallycorrelated with elevated ADC in normal-appearing WM of patientswith Moyamoya disease. This structural abnormality may reflectlow-grade ischemic injury after exhaustion of the cerebrovascularreserve capacity.

Ok, I have to admit this article is beyond me a good bit! If I am interpreting this correctly, there is a limit to the amount of "reserve" capacity. If someone else can shed more light on this and put it into plain english I would appreciate it!!

(My best guess is the brain has a limited capacity on growing the extra veins and supplying blood via the indirect routes? But low-grade ischemic injury seems to indicate this has not been a severe complication.)

2010-05-06T14:41:00.004-04:00

http://www.newswise.com/articles/large-moyamoya-disease-study-reveals-key-gender-differences-in-surgical-patient-outcome-and-postoperative-risks

Large Moyamoya Disease Study Reveals Key Gender Differences in Surgical Patient Treatment Outcome

Clinical findings by gender elucidated in this study:

•Female MMD patients had a two-fold higher risk of developing TIAs as a presenting symptom than males.

•Females had a three-fold higher risk of adverse postoperative events than males.

•Five-year cumulative risk of adverse postoperative events: 8.3 percent in females versus 2.7 percent in males.

Both males and females experienced significant clinical improvement following surgical revascularization at a mean follow up of 4.6 years. “This data supports surgical revascularization as beneficial to both groups, despite the trend toward a higher rate of adverse postoperative events in females. The importance of early clinical evaluation, diagnosis and prompt surgical intervention is clearly essential, but the exact role of gender-related influences in the pathophysiology of MMD needs to undergo further studies,” concluded Dr. Khan.

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A few interesting facts here, this is the place that we see recommended most often for MMD surgery and it is good to see some numbers come out for us to analyze.

309 Women with the surgery, 25-26 had postoperative events, 8.3%

124 Men with the same surgery, only 3 or 4 with postoperative events 2.7%.

As you know I created this site because of the attitude that is seen on MMD website of ALWAYS surgery, 100% of the time, and if you ask about other options you are literally ridiculed and told you do not love your spouse, child, etc unless you make them get the surgery!! (Ask me how I know..)

Now, if you have read THIS site, you realize that I believe that surgery is likely the BEST option for creating additional blood flow, and that blood flow IS the key to MMD!

Side note, blood thinners ALSO seem to have a positive effect in that area, helps to prevent future blockages, etc, NEITHER surgery or blood thinners is a cure.... but help to reduce the symptoms. Keeping yourself HYDRATED is VERY VERY important for MMD folks, getting dehydrated can cause a "watershed" stroke so drink lots of liquids folks!

So, I am just reporting the news, when I can actually read the paper in depth, I will do so and report on those findings as well!!

But good information to have / and realize that the surgery does NOT guarantee no future events!! In fact for women this study shows 8.x of 100 do have further postop events.

As always, our prayers go out to everyone with MMD

Fetal radiation exposure and moyamoya disease

2010-01-26T15:28:00.003-05:00

http://www.ncbi.nlm.nih.gov/pubmed/20089408?dopt=Abstract

WOW!!!!!

I really don't know what to think, if they are saying there is a link, or just for this one boy...but IF so, that really DOES make sense!?

Moyamoya is most prevalent in Japan... which the USA dropped nuclear bombs on!!! What do you want to bet there is more expose to radiation exposure there?

Not sure what else to say here other than this is VERY VERY VERY interesting, if this can be proven, we would have to look for exposure for our loved ones when they were in the womb? My mother in law is a nurse and hospitals have all sorts of xrays, and such, who knows how little it takes or when!

Conspiracy theory type stuff, I will be interested to read this article too when it comes out for the viewing public!

2010-01-26T15:24:00.002-05:00

http://stroke.ahajournals.org/cgi/content/short/STROKEAHA.109.562264v1

"Conclusions—Elevated thyroid autoantibodieswere frequently observed in patients with MMD. The results ofthe present study suggest that immune aberrancies associatedwith or underlying thyroid autoimmunity are also playing a rolein developing MMD."

I started trying to see what the heck thyroid autoantibodies were and folks some other interesting links, basically thyroid disease and these antibodies are found in some other autoimmune diseases, like diabetes!!

Not really much else to talk about here other than it is interesting, the full article is not released to the public yet (I am not a subscriber to STROKE, though I hope my wifes Neuro Doc is!), will comment more on it later when I can read it in full.

Hyperfusion after surgery

2010-01-26T15:09:00.002-05:00

http://www.ncbi.nlm.nih.gov/pubmed/20079151?dopt=Abstract

"CONCLUSIONS: STA-MCA anastomosis improves the cerebral blood supply significantly in the early stage after surgery, however, the risk of symptomatic hyperperfusion may exist, which may possibly occur on the 1st day and 5th day after surgery. A LDF is useful for postoperative monitoring for both the efficacy of bypass and possible risk of neurologic deterioration or bleeding from hyperperfusion."

Ok, lets restate this a bit in plain ENGLISH for those of us who are not doctors!! First of all, we again are seeing that the STA-MCA surgery increases bloodfloow, which is the point of the surgery.

Next we see that it is possible that the NEW increased blood flow could cause new issues / bleeding / neurologic deterioration.

I think most of us realize surgery is always going to have some dangers involved, personally what I am taking out of this is that they need to be using the LDF (Laser Doppler Flow) to measure the new bloodflow for at LEAST FIVE days after your surgery!!

You will note in that link, article, the days with the greatest risk of hyperperfusion was DAY 1 and then again on DAY 5!!!

NOW here is the scary part... if you read that article again, you will note they ONLY measured this from Day 1 to Day 5, and consistently on Day 5 we are back to the 2nd highest level!!? There was a decrease from Day 1 to 4, and then back up on Day 5.

Personally I would want to know, what about Days 6-10? If the point of the study is to watch out for this hyperperfusion, and I saw a spike at the END of my survey, I would want to extend my survey to make sure there is not an ongoing issue due to the surgery??

Now, I am sure folks, who are in the 100% PRO surgery, 100% of the time, camp, will attack me here for posting this or the fact that the Day 5 result is a bit scary?? So as always, I want to conclude, surgery is TO increase bloodflow and if your bloodflow is low enough that the doctor wants you to have surgery, I would have it!!!

Unfort those folks tend to gloss over or ignore the fact that this is pretty radical stuff and that folks are scared and just want to know their love one is going to be ok. As always, I suggest reading and learning EVERYTHING you can find!!

Every couple of months, I go out to the STROKE journal and see what else has been written. I have a pretty intresting story I am going to link next that shows there is a link between thryoid issues and MMD!

Stroke Notes: North American moya moya is different

2009-10-08T14:13:00.000-04:00

Stroke Notes: North American moya moya is different

Non Surgery Support!!

2009-10-08T13:57:00.002-04:00

If you have chosen to NOT have surgery, would LOVE to get a comment from you here, so we can start compiling a group of folks that are walking the same path.

I saw a few posts that encouraged me to start this, so welcome!

Blood flow is KEY...

2009-10-08T13:24:00.002-04:00

I am spending my time with Em instead of hanging out here or on the MM board, but I do check in every once in a while.

The trend continues that when asked if surgery is always required, that the answer is 100% yes on the forum. The same folks continue to always jump in and repeat the standard "progressive" disease remarks and that if your doctor recommends anything but surgery they must NOT be an expert.

READ my other posts here, there is statistical PROOF that the surgery is for ONE purpose only and that is to improve BLOOD FLOW.

In NONE of the posts do they EVER ask the question about whether or not the doctor has done a blood flow assessment?? THAT is the primary tool for deciding whether or not surgery is required at this point!!

Who has the NIH asked to study this disease?

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

Now I hate to be a skeptic, but let me ask you this question. If you ask a surgeon whether or not you need to pay him TENS (Hundreds?) of thousands of dollars for surgery... what do you want to bet is his response?

This is true for nearly EVERY branch of medicine, ask a surgeon if surgery is needed and there is a GOOD chance the answer is yes. (Ask a therapist if therapy will fix you, and chances are THEY will say yes too...so I am saying there is a natural bias.)

SO...what is UNbiased? Science, math....

Ask for the MATH... what is my brain blood flow and oxygen levels in the side of the brain with Moyamoya?

What is the "normal?"

What is the "normal" for folks AFTER that surgery???

Surgery is supposed to increase that, it does NOT stop the disease, and if you read the MM forums enough you will read several stories about major strokes, minor, TIAs after surgery!!

That's right, it is STILL all about BLOOD FLOW!!!! You will also read cases of folks diagnosed 30 years ago, NO surgery, that are doing fine!!!!!

BUT EVERY case is unique. Surgery is not the 100% answer... GET the numbers, ask the questions, educate yourself and THEN make a decision based on all the data.

FINAL thought... DO I think surgery is the right answer? I suspect that for MOST folks, that it improves BLOOD FLOW, therefore it IS THE RIGHT DECISION!!

But I come to that opinion AFTER doing the research, hearing the math and making an informed decision, not just listening to the "standard" answer.

(To answer another question, NO, Em has not had surgery, taking blood thinners as primary treatment method for now.)

MoyaMoya and Retinopathy

2009-10-08T13:16:00.002-04:00

We have been battling Diabetic Retinopathy for a couple years now, with the latest surgery a couple weeks ago.

According to the Doctor, since the eye is not receiving the "standard" amount of blood flow, it believes that more veins are needed.

Those start growing in the eye, they will bleed at times, causing black spots in your vision, etc, which is how we first found out she had this issue.

This is likely to be caused even MORE by the fact that Moyamoya reduces the amount of bloodflow to the brain. Diabetes is the primary reason for the retinopathy, but I wanted to put up a post here that if you have Moyamoya AND diabetes, you really need need to have your eyes checked out by an Opthomologist.

The normal eye doctor that checks your vision does NOT have the tools that can truly diagnose the Retinopathy. So just consider yourself forewarned!

In our case, we started with the Laser surgeries about a year before knowing Em had the Moyamoya, and another round of them again this year. Then in September, she had a vitrectomy and is recovering from that now.

Treatment of Moyamoya

2008-09-29T08:10:00.002-04:00

I want to be VERY clear about this, if you Doctor has recommended surgery for Moyamoya, then I hope that you pursue this with all haste.

If your Doctor has commented or proven in other ways to NOT be familar with Moyamoya, I would hope that you will contact Dr. Steinberg or another specialist such as those at Washington University to get their opinion on your condition!

I am NOT against surgery for Moyamoya in any way, shape or form!!! It does have a good track record at increasing profusion (more blood flow) in the brain!!

Here is my ONLY real difference in opinion...

IF your Doctor has measured your blood profusion (variety of ways, SPECT, etc, Washington Univ is REALLY good at this) and the profusion is already GOOD despite your blockage. Then if the Doctor does not believe the risks of surgery are "worth" any increase in profusion...then following their plan of treatment is reasonable.

Surgery will NOT cure Moyamoya, it WILL increase profusion (blood flow) and for MANY folks they need this and they need this ASAP!!!!

But surgery (and treatment by blood thinners, etc) does not cure the disease, but is a treatment of the symptoms.

I have been told I am the advocate of "wait and see" and I can assure you I am not. I am an advocate of finding a Doctor, with comprehensive knowledge of the disease and following the course of treatment they recommend.

I am REALLY big advocate of self-education, I know more about this disease than I did six months ago!!

My only other difference from "the Party line" is they will always tell you the disease is "Progressive" Read my post below and you will see this is NOT true for all folks. (Read the statistics there for yourself)

I hope this helps anyone reading this site or Moyamoya.com in seeing what my differences are.

Followup on Angiogram procedure in children

2008-09-26T08:10:00.001-04:00

A followup on the diagnosis of Moyamoya in children. This discuss came up recently on the Moyamoya website and my information (posted below) was deleted by the owner/admin of the site. He quite correctly points out that angiogram IS the definitive tool for diagnosing Moyamoya. My point simply is this...if your child has already been diagnosed via MRI / MRA and the Doctor has not recommended an angiogram...then I would follow your Doctor's advice on the course of treatment.

Here is a couple more links with USEFUL information to know about angiograms and children. You should note in the one study, out of 241 children, one did pass away because of a complication. My point in all of this is UN-needed medical procedures do have risk and I would not want to subject any child to that risk unless it was truly vital.

Neurologic complications of cerebral angiography in childhood moyamoya syndrome
http://www.ncbi.nlm.nih.gov/pubmed/9799310

Out of 190 angiograms performed on 152 children "Results. There were 2 neurologic complications within 24 hours of angiography, one in the MMS group and one in the non-MMS group. One patient with MMS became mute following angiography. The symptom resolved within 12 hours. One patient without MMS being examined postoperatively for residual arteriovenous malformation developed intracranial hemorrhage requiring reexploration 12 hours after the angiogram."

Safety of Cerebral Digital Subtraction Angiography in Children
http://stroke.ahajournals.org/cgi/content/abstract/37/10/2535

Out of a group of 241 children "One child with a complex dural arteriovenous fistula experienced a fatal intracranial rehemorrhage secondary to a posterior fossa varix rupture 3 hours after completion of an uneventful diagnostic angiogram."

FINAL thoughts, in BOTH of these studies they DID conclude that "The rate of immediate complications occurring during diagnostic cerebral angiography in children is very low" so please do not take this as a "highly risky" procedure.

But there IS risk, and if you have a diagnosis of Moyamoya without this, and your Doctor has NOT recommended an angiogram, WHY you would pursue this or recommend it to others?

Drake's type of dwarfism associated with Moyamoya

2008-09-25T11:41:00.000-04:00

Excellent article about the link that has been found out of a VERY small population (150 folks have the Drake's Dwarfishm, and he found Moyamoya in three of them in 2008!!)

http://www.medicalnewstoday.com/articles/122192.php

Diagnosis of Moyamoya - Methods

2008-09-25T11:32:00.000-04:00

I wanted to mention this as it was discussed on the "other" board recently and the discussion was about how to diagnose Moyamoya.

In the article listed below (Sept 2008 STROKE) they addressed this VERY specifically regarding children! Basically what you want to know is this, there CAN be complications when doing angiograms with children. That makes sense, their veins are much smaller than us adults!!

They DO perform the angiograms at times, that is something you and the Doctor should be discussing, but the actual diagnosis of Moyamoya CAN be done with MRI / MRA, please read the following quote!!

http://preview.tinyurl.com/6eunot

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"Most suggestive of moyamoya on MRI is the absence of flow voids in the ICA, MCA, and ACA coupled with abnormally prominent flow voids from basal ganglia and thalamic collateral vessels. These imaging findings are virtually diagnostic of moyamoya syndrome.138,143–147

Because of its excellent diagnostic yield and noninvasiveness, MRA has largely supplanted CA as the primary diagnostic imaging modality for moyamoya syndrome.143,148–153

However, although MRA affords the ability to detect stenosis of major intracranial vessels and to visualize the basal collateral vessels, MRA is less reliable when applied to smaller vessel occlusions. In a study of 190 angiograms from pediatric patients, the complication rate from angiography in children with moyamoya syndrome was no higher than the risk of angiography in nonmoyamoya populations with other forms of cerebrovascular disease."

Latest articles in AHA!!

2008-09-04T09:38:00.000-04:00

Something I personally plan on doing is reading everything I can about the disease and the best place is the American Health Association. This is the SAME place that many of our Doctors goto to read the latest findings.

The language can be difficult (written FOR Doctors) but you can often read enough to understand the analysis and conclusions!

Management of Stroke in Infants and Children

Purpose— The purpose of this statement is to review the literature on childhood stroke and to provide recommendations for optimal diagnosis and treatment. This statement is intended for physicians who are responsible for diagnosing and treating infants, children, and adolescents with cerebrovascular disease. [Excellent info about how they are diagnosing and treating children with strokes!]

http://preview.tinyurl.com/6eunot

Hope all are doing well!

2008-09-04T09:32:00.000-04:00

I saw a couple articles come thru Google news during August and thought I would share them. All is well on our end, Emmie is still recovering function in her arm and leg, keep her in your prayers.

http://www.pjstar.com/news/x627091444/Causes-for-Concern

http://www.pjstar.com/features/x1033420827/Teen-shows-his-gigantic-heart

Welcome to our new contributors!!

2008-08-05T12:11:00.001-04:00

As you can see we have a growing list of contributors here and I want to encourage each of them to use the site and blog as they wish!!

If you are interested in becoming a contributor please contact us via the comments area, we DO read those and will respond to questions, etc.

This is a bit different from a forum enviornment, but basically a BLOG posting is like starting a new topic and then the COMMENTS area is where we can respond to each others posts!! [Keep an eye out for comments area!]

Welcome one and all, S & E

Is Moyamoya really progressive??

2008-07-29T08:50:00.000-04:00

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!!

2008-07-28T14:28:00.000-04:00

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!!

2008-07-28T14:16:00.001-04:00

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!!

2008-07-28T13:58:00.000-04:00

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

2008-07-28T13:45:00.000-04:00

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!