Thursday, November 11, 2010

New Method of detecting Moyamoya !

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...

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.

Friday, October 1, 2010

Good News!!

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 - 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!!

Regions of steal phenomenon are spatially correlated with elevated ADC in normal-appearing WM of patients with Moyamoya disease. This structural abnormality may reflect low-grade ischemic injury after exhaustion of the cerebrovascular reserve 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.)

Thursday, May 6, 2010

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.


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

Tuesday, January 26, 2010

Fetal radiation exposure and moyamoya disease


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!

"Conclusions—Elevated thyroid autoantibodies were frequently observed in patients with MMD. The results of the present study suggest that immune aberrancies associated with or underlying thyroid autoimmunity are also playing a role in 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

"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!