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NINDS Study (Read 9043 times)

JeepNerd

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NINDS Study
Jun 25^th, 2008 at 12:22pm

http://clinicaltrials.gov/ct2/show/NCT00629915?term=Moyamoya+Disease&rank=1

I know MAR and I were looking at this a couple of days ago in my 'Diagnosed in NC' thread and it would appear the Washington Univ website does not have much info on there at the moment, but they do appear to be the folks the NINDS has designated to study Moyamoya.

I believe they are looking for folks that have had surgery and those that have not, so they can track the blood flow during the 5 year study.

I know her main concern was the statement about the surgery causing complications, etc.
That is exactly what they are trying to do the study on so they can class Moyamoya folks and what level of treatment to recommend for them.

Anyway, thought this might be a good resource, especially for those with medical/insurance difficulties since this study would be getting / providing regular scans!!

Anyone participating in this already?

"Treatment for moyamoya is difficult because so little is known about the disease. Some people never have a stroke while others may have several. It is likely that the strokes are due to insufficient blood flow to the brain. [i]There are surgical procedures that may improve blood flow to the brain, however, these procedures may cause complications and may not always improve the blood flow
.

The main purpose of this study is to determine if people with moyamoya disease who have insufficient blood flow are at a higher risk for stroke. In this study researchers will learn more about the risks and potential benefits of surgical treatment. This information will help decide if there are people at higher risk for stroke who might benefit from surgery or if there are those at a lower risk who might not benefit."[/i]

(Edited to add this) I was reading in the Medicare thread that the bypass was not "authorized" etc as a standard procedure for MMD. However reading this, if this study can prove the surgery is THE definitive answer THEN Medicare will have to support it!!

« Last Edit: Jun 25^th, 2008 at 2:37pm by JeepNerd »

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Mar

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Re: NINDS Study
Reply #1 - Jun 25^th, 2008 at 1:51pm

JeepNerd,

Before you make comments about what someone else’s main concern may be, on a website that is meant to help others get accurate information, I suggest you talk to that person first, so you will at least give the impression you know what you’re talking about, because you are absolutely wrong in your statement about me, and quite frankly, I don’t think you really know what you’re talking about.

Mar

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JeepNerd

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Re: NINDS Study
Reply #2 - Jun 25^th, 2008 at 2:31pm

Quote:

I’m compelled to comment about what I just read from the Moyamoya Center at the University of Washington in St. Louis. IMO, it seems to be extremely outdated information or something is totally wrong about the way they describe the facts of MM, because it certainly does not reflect the most recent facts about MMD from leading MM experts. This so called experienced MM center never once mentions the fact that MM is a progressive disease, which every other reliable source does. Their deceiving description of MMD is extremely misleading to new MM patients, IMO. For example, they state:
” There are surgical procedures that may improve blood flow to the brain. These procedures may cause complications, however, and may not always achieve the desired result of improving brain blood flow. Sometimes blood flow to the brain is normal despite the blockages because of connections from normal arteries that bypass the blockages. People with normal blood flow may not have anything to gain from surgery.”

Yet, -- NINDS (National Institute of Neurological disorders and strokes) state: There are several types of revascularization surgery that can restore blood flow to the brain by opening narrowed blood vessels or by bypassing blocked arteries. Children usually respond better to revascularization surgery than adults, but the majority of individuals have no further strokes or related problems after surgery. PROGNOSIS: Without surgery, the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries. Without treatment, Moyamoya disease can be fatal as the result of intracerebral hemorrhage.

Also, Dr. Scott, Children's Hospital, Boston- a leading MM specialist states: All patients with moyamoya syndrome will develop progressive narrowing of their brain blood vessels over time, and we have never seen an exception to this rule after more than three decades of studying these patients. Along with this progressive narrowing of the brain blood vessels, the patient's clinical condition also worsens; this is why we believe that surgery to increase the brain's borderline blood supply is so important for most patients.

Those were just two sources regarding the accurate and recent facts about MMD, yet your recent post of this MM center implies a MM patient may have nothing to gain by surgery.
Something is wrong with a place that states misleading facts like that. I sure hope you continue to educate yourself about this disease.

I’d also like to mention that MM is a VASCULAR disease, so I don’t understand why anyone would feel comfortable with a neuroradiologist when this disease requires a neurosurgeon with vascular specialty.

PLEASE continue to do your research, but keep in mind that prompt treatment for MM may also be required, especially with a 95% blockage. I don’t know your specific case, I’m simply going with the logic… if your wife has good blood flow, then why the strokes??

Mar

Mar, not sure how we got off on the wrong foot here, I was just trying to let OTHER folks know that you had "concerns" that you voiced in my other thread and therefore anyone reading my links above should note that you have found information that you thought was a bit iffy?

You took time to mention the issues in detail in my other thread and I was just trying to post the info and include the 'warning'/concern/whatever you want to call it or not call it to be fair?

I realize that you have been reading all of this stuff MUCH longer than me and I am still learning. I did not mean to create a 'flamewar' and hopefully this will let bygones be bygones. SORRY that I stepped into your territory, etc!

Hopefully this study will benefit us all...

« Last Edit: Jun 25^th, 2008 at 2:33pm by JeepNerd »

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Mar

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Re: NINDS Study
Reply #3 - Jun 25^th, 2008 at 3:42pm

Again, you have it all wrong!! No territory concerns here. I just want you to get it right and not speak for someone unless it’s true. First off, for the record, my main concern was ALWAYS your wife, first and foremost. You stated your wife was recouping from her strokes and that she had a 95% blockage, but had good blood flow; therefore no surgery was recommended at this time, so I wanted you to know the facts of this disease for her sake.

I read the study, know all about the study and personally feel ANY study/research for MM is wonderful, however, you being new to the website and your wife being newly diagnosed, I assumed you didn’t have all the information about MMD that’s out there, especially when you posted the link to Washington University’s information on MMD and it barley gave any updated information on MMD at all. I thought the information on there was misleading to new members and said so. I owed that to you, your wife and any other members that want accurate facts about this rare this disease.

I stated further for your wife’s welfare and any other person needing this information, that NINDS and another leading MM specialist, believes that MM is a progressive disease and that this WA Study link you provided NEVER once mentions MM as being a progressive disease, hoping you’d see the risk here with a 95% blockage and it being progressive. You also stated your doctor tried to recruit your wife for the study and I simply wanted you to see the ENORMOUS risk for stroke/hemorrhage for your wife. That my friend was my main concern, nothing else!

But if I were to comment on the study, all I’d say is, I know what this monster of a disease is capable of and I personally would NEVER want a loved one that already previously stroked with a 95% blockage in any study taking that kind of risk. The fact your doctors reccommends her for the study scares me. Study or no study.

Mar

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Mar Ex Member	Re: NINDS Study Reply #4 - Jun 25^th, 2008 at 8:29pm I’m sorry that I chose to be snippy rather than talk it out. I seldom get like that but when I do I see the stress getting the best of me, forgive me. Mar
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MrsDeej

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Re: NINDS Study
Reply #5 - Jun 26^th, 2008 at 8:38am

Not snippy Mar, just passionate with your words.

I can completly understand why you said what you did. I don't understand why an organization would "sit back and wait", especially when they know what can happen. I think it's a dangerous study, and I'm with Mar when she said she was doubtful and had concerns for your wife. MMD is like a walking time bomb, you never know when it's going to go ff if left untreated. PLEASE reconsider and get her on the books for surgery ASAP!!!

Live everyday as if it were your last, ALWAYS say 'I love you' when leaving someone dear to your heart and NEVER go to bed angry!

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mg12061

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Re: NINDS Study
Reply #6 - Jun 26^th, 2008 at 12:23pm

I've been reading this thread....I agree with Mrs.Deej,not snippy but passionate.You see JeepNerd, we here in this group have been around long enough to see some very tragic outcomes of this disease so, if we ever sound "snippy" it's most likely just the passion and compassion that has become part of our life with this disease.Let me tell you my story and the reason I would NEVER sit back and wait without talking with one of the very few known experts like Dr. Scott or Steinburgh.My daughter was just 5 yrs old when she had ehr first stroke and diagnosed with moyamoya.We consulted with Dr. Scott and had some tests done,his findings were not so urgent at the time but he did schedule her for surgery within a few months.She then suffered another stroke that was worse than the first.It was at this point he pushed her surgery up a bit.She then had another stroke the day before her surgery again,more severe than the last one. These strokes put her in a much more unstable condition for the surgery.After the first surgery she suffered strokes on both sides of her brain(most ;ikely because she was in a very unstable condition from all the previouse strokes) one was very severe leaving her like an infant.Since the day of her last surgery she ahs had no new strokes(we thank god and Dr. SCott everyday for that).BUT she has struggled daily to rehabilitate from the devestating strokes she did suffer.She still has no functional use of her left hand and arm,after a year in a wheelchair,she can walk with the use of a full leg brace.If I could change one thing in my 47 yrs of life it would be to have had the hindsight and be able to have scheduled her surgery sooner, before her life altering strokes.Her life would ahve been soooo much different.You see we all want the best for anyone living with this disease,and feel compelled to share our knowledge so no one has to have regrets about the care they've gotten for their loved ones.Please accept our opinions and knowledge with the love and care they are intended.You see as everyone has stated this IS progressive and no one can predict how quickly it WILL progress, only that it WILL.It's just sooo easy to contact Dr. Steinburgh for his expert opinion on your wifes tests that have been done.We don't want anyone to ever get the idea that it's OK to sit back and wait without an expert opinion.(((((HUGS)))) and prayers to your family as they sort through this life altering decision.
Mary Grace

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Mar

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Re: NINDS Study
Reply #7 - Jun 26^th, 2008 at 2:47pm

Thank you Steph and MaryGrace for understanding the real point here. I was hoping JeepNerd would see the danger and risk without surgery, which his doctor and the study do not see. We saw this disease strike out of nowhere and destroy lives, and we only want what’s best for any MM patient.

I previously posted ONLY “two” reputable sources that believe the majority of individuals with Moyamoya disease will experience mental decline and multiple strokes because of the progressive narrowing of arteries and that without treatment, believe that Moyamoya disease can be fatal as the result of intracerebral hemorrhage, and to date, we know every other reputable source believes the same exact thing, yet JeepNerd and his doctor is more concerned about this study that offers absolutely no treatment to those participating and doesn’t see the risk of stroke or death at all. I just don’t get it!!

He stated that

this study is so they can class Moyamoya folks and what level of treatment to recommend for them.

At what risk?? What other level of treatment is there that could prevent those tragedies??? We know that NO MEDICATIONS prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing, and that surgery is the mainstay of treatment for MMD. So, my point is, with a 95% blockage and previous strokes, and knowing without surgery it can be fatal, what other level of treatment on God’s green earth could there be other than surgery??

I personally wouldn’t want a doctor who took those kinds of risks! That speaks volumes as to his knowledge and experience with this rare disease!! He says he’s glad his doctor has MM experience because he sees 3-4 cases a year, well that’s NOT necessarily experience, as I know it. The doctors here told us they new all about MMD too because they saw 6 per year here at the University of Penn, and as you know their experience was very similar to JeepNerd’s doctor, and they too told us Mandy didn’t need surgery either, and she ended up with 4 devastating strokes and her life destroyed forever. That’s why I have to question 3-4 MM cases per year as being experienced and a doctor and a study that takes those risks.

Mar

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moody

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TaRe: NINDS Study
Reply #8 - Jun 26^th, 2008 at 5:40pm

Hi JeepNerd, Mar is right, this disease is progresive, I have 2 bypass surgery with Dr. Tamargo at Johns Hopkins Hospital( 1 of the greatest hos. in the country), and before surgery I have consult with Dr. Kasell at University of Virginia and both doctors told me that this disease is PROGRESIVE and the only treatmen is surgery, so you see, different doctor from different hospital say the same thing about the disease, your wife is caring a timing bomb so please get her to see other doctor, get her in surgery as fast as you can or you will regret it. It just my Smiley

.

Your wife is in my thoughts and prayers.

Kieu

Yesterday is past, tomorrow is future, today is the gift, that why we call it present.

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KTiller

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Re: NINDS Study
Reply #9 - Jun 26^th, 2008 at 6:50pm

Hi JeepNerd,
The study at Washington University is being funded with a grant from the National Institute of Health. Doctor's, MOST of whom are completly ignorant of moyamoya disease, have no guidelines telling them when they should recommend surgery for a patient with moyamoya disease. NIH, with the help of Washington University and fifty unfortunate patients who are or will be enrolled in the study, will help them to determine at what cerebral blood flow measurement they will "most probably" stroke. Stoke, along with reductions in the quality of life index score, and death are the three end-point measurements of this study. Those running this test are counting on the fact that some of these patients will indeed stroke, have decreased mental and/or physical abilities and/or die during the five year period of this study.
I can understand why a doctor might allow a moyamoya patient to enroll who has good cerebral blood flow AND who has NOT expereinced TIAs, shown degradated physical or mental behavior, or stroked. Many patient's with unilateral moyamoya are asymptomatic on the other side are waiting while being closely watched for changes in one of these.
BUT, if the cerebral blood flow is poor or ANY of these has occured, then I strongly believe that it would be criminal to allow a patient to take part in the study who has not first received surgical treatment. If encouraged to enroll without the surgery then the question to be asked of the enrolling physician is "Were you in my ____'s condition, would you take this risk with your brain?" I'd be very surprised, if any would honestly answer in the affirmative.
Here is the link to the NIH Moyamoya study:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

One thing I don't understand is why the study designates that stroke and death are not considered safety issues. I'm sure the patients would consider that either of those outcomes jeopardize their personal safety.

Thank god no children will be enrolled in this study.
Kim

« Last Edit: Jun 26^th, 2008 at 6:57pm by KTiller »

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Lore

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Re: NINDS Study
Reply #10 - Jun 26^th, 2008 at 9:26pm

AMEN!!

Very well said Mar, Mrs. Deej, Mary Grace, Kieu and Kim.

The MoyaMoya family is all about saving lives not destroying them.

Many on this site work tirelessly to advocate appropriate treatment options and care for all MoyaMoya patients based on evidenced-based medicine and facts.

There is enough evidence out there already that clearly shows this is a progressive disease and ultimately the patient will stroke or hemorrage or both. That's exactly what we are trying to avoid. Not to mention the health risk of an individual who waits to seek apporpriate surgical treatment but the possible lifetime of grief associated with such action.

Even if a patient with good cerebral bloodflow enrolls in the NINDS study, the study is about looking for a stroke or death to occur. Again, the things we have tirelessly advocated and have worked so diligently and hard to avoid.

As an individual who values human life and who also knows the devastation of this disease first hand without a skilled, knowledgeable and experienced Moya Moya specialist providing immediate surgical intervention, I am outraged at such an attempt to "study a human life".

The NINDS study, IMO, has no value nor do I see it as appropriate for any MoyaMoya patient. I truly question the entire motive or reason for such a study given the evidence-based medicine available to date regarding the disease, the probability of stroke and/or hemorrage and possible death . I personally do not want to see us regress in our quest to get MoyaMoya patients properly treated in a timely fashion by a skilled MoyaMoya expert.

I liken the NINDS study to watching a person's blood pressure soar and waiting to see at what point (measurement) they stroke. We all know there are established measurements that indicate when a person's blood pressure is at a certain point they are at risk to stroke. The doctor gives the patient meds to bring the blood pressure down to a normal range. They don't just let the patient stroke or die for God's sake! It's really no different from MoyaMoya. The difference being the lack of blood flow in a MoyaMoya patient versus high blood pressure but the outcome can be the same......stroke and/or death.

I personally could not live with myself if I so much as suggested my loved one enroll in such a study. And at a hospital that isn't known for being skilled, knowledgeable and experienced in the disease. What's up with that?

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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Mar Ex Member	Re: NINDS Study Reply #11 - Jun 26^th, 2008 at 10:04pm Well said Lore!!!!!! AMEN!!!!
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Seachelles

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Re: NINDS Study
Reply #12 - Jun 27^th, 2008 at 5:36am

JeepNerd - please take what we are saying to heart. We only want what is best for every single person that comes on to this website. If we didn't, we wouldn't be here.

Just as an example. It took a year for me to be diagnosed with this disease. I spent many sleepless nights wondering what was wrong with me and was misdiagnosed with everything from high blood pressure to anxiety. In fact, everyone thought I was crazy at my home hospital, when in fact, I WAS NOT crazy at all.

Finally, I was diagnosed with MMD at a hospital near my work. To keep a long story short, I had a consultation with the neurosurgeon at this hospital who said that he has seen MMD and has done the surgeries for patients. During the consultation he looked at my angio films and said to me, "I think this is MMD, but I'm really not sure." Looking back now, if that wasn't MMD, then I don't know what was. He also told me that he wanted to wait six more weeks and then evaluate whether I should have surgery or not. He did not want me to have surgery while having active TIA's.

Now, at this point I had been reading everything I could about MMD on this website. One thing I remember is that this disease is progressive and that you should not wait to have surgeries. My mom and I came out of that consultation and both shook our heads and said this man is not doing my surgery. I immediately got all of my films and sent them to a MMD expert, Dr. Steinberg.

Once he got back to me he said that I did have the disease on both sides and that I needed to have surgery as soon as I could in his opinion. One thing that rings clear in my mind is that Dr. Steinberg said that if I had not come when I did, I would have probably died from a severe stroke and/or bleeding on the brain. That certainly put things into perspective for me and that I'm glad I didn't take the advice of the neurosurgeon that did my first consultation.

I hope that you realize how crucial it is that your wife have surgery. I will certainly keep you, your wife and family in my prayers.

Michelle

Michelle

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JeepNerd

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Re: NINDS Study
Reply #13 - Jun 27^th, 2008 at 4:00pm

I am reading and absorbing all of this, so thank you all for responding!

We are meeting with both the neurologist and neurosurgeon again over the next 3-4 weeks and all of this certainly gives me questions to ask that I did not ask previously.

The bypass surgery was mentioned by the doc as an option that we would pursue if the blood flow was "on the edge" or in the future as needed.

That if the MRI showed good blood flow then for now we would treat it medically.

I have not talked/mentioned this before, PLAN A was actually a possible stint in the caratoid artery itself, this would have been done/has been done previously with good success.

However her blockage was too near the 'intersection' and they did not want to chance that operation creating an inflamation that would shut it down.

So we are on Plan B of 3...Plan C is the bypass

Let me ask this and hopefully you have some links to help me out here.

I have heard TWO things, one is that it is progressive, seen this in lots of places and believe that is true.

I have read somewhere (cannot find it at the moment) that the current findings is that there is a 2 year cycle where the inflammations are the worst and then the progression is not as fast.

Has anyone else heard that / seen that, etc? I swear I saw it on Dr Steinbergs site but not getting google to help me today?

Again, I have been around the internet a long time, my hide is thick, and this is WAY TOO IMPORTANT of a topic for me not to listen and read everything.

So no worries on my end about tone, I honestly was just trying to put this out there as a resource. I had read in other posts, folks struggling that were not getting the exams, etc and was hoping this might help them.

http://moyamoyainfo.blogspot.com/

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JeepNerd

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Re: NINDS Study
Reply #14 - Jun 27^th, 2008 at 4:04pm

Oops, forgot to say, PLEASE help out on the other poll I created, I really want to see if there are others out there getting treated medically/successfully. Or if there are complications after the bypass we need to know about etc..

I suspect just our informal poll here could really help educate everyone as to what others on here are doing! If there are 999 folks on there with successful surgery and we are the only bozo getting treated medically I need to know!

http://moyamoyainfo.blogspot.com/

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KTiller

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Re: NINDS Study
Reply #15 - Jun 27^th, 2008 at 6:28pm

JeepNerd,
I'm at work now, when I get home this evening, I'll search for the published paper I found when researching Moyamoya Disease at the University of Washington Medical Library regarding the INeffectiveness of medical treatment for Moyamoya disease. Without the paper in front of me, I can't be certain of the time frame, but I believe that trial showed that within two years medical treatment failed for patients with moyamoya disease - failure meaning stroke or death. That paper was the deciding factor for me regarding surgery or medical treatment.

My first neurologist prescribed medical treatent; 325 mg of aspirin and Clopidigrel daily. He then made sure that I recognized the symptoms of stroke and told me to get myself to the emergency room immediately when I experienced any of those symptoms. When I asked how effective the medical treatment would be, he told me he knew of patients who survived as long as three years without stroke - yikes! That wasn't good enough for me - I didn't want more holes in my brain! And his prognosis was that I would have many, many more - yet he didn't recommend surgery. He said he might "eventually" consider stenting my MCA. The two neurosurgeons with whom I later consulted (Dr.David Newell, Swedish Neuroscience Center, Seattle, WA and Dr. Gary Steinberg, Stanfod Medical Center, Stanford, CA) were aghast - the MCA is too deep in the brain; stenting it would have caused a massive stroke they said.

My personal experience has shown that there are neurologists out there who are treating Moyamoya who haven't enough experience or knowledge of this disease to recommend the proper treatment - even some who profess to be experts wait too long. Too many or too devastating a stroke can mean that the surgical option when finally exercised entails greater risk or even too great a risk to be considered at all. That was the case for two moyamoya patients who I know.

So forgive my impatience, but what are you waiting for? Please get second or even third opinions from two of the moyamoya specialists whose names often appear in these postings; Dr. Scott and Dr. Steinberg. They will charge you nothing to review her records and give you their informed opinions. THOSE are the opinions that you should consider. So who do you believe? Believe them.

I came through this ordeal with my brain intact and with minimal physical damage (due to small strokes prior to surgery). But I didn't mess around. I got the information I needed to make an informed decision and then took immediate action. Life is darned precious and very tenuous - why take unnecesary risks?
Kim

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Shan

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Re: NINDS Study
Reply #16 - Jun 27^th, 2008 at 6:48pm

Aloha JeepNerd,

I believe by now you understand that most here are advocating for your wife to seriously consider having surgery--and not just "sit and wait." Undecided

As one who was misdiagnosed for months, even while I continued to experience TIA's, I ended up having an emergency double bypass and EDAS from a MM specialist that is located right around the corner from where you're located! ; Grin

If I did not have this surgery, for me, I am sure my TIA's would've turned worse--possibly into a major stroke, if not worse. Embarrassed

Although surgery is the only option I feel a MM patient has to ensure our brains receive the necessary amount of blood, your wife's medical team must have their personal medical opinions why she shouldn't have her surgery just yet. (i.e. You mentioned 'location') I am not a medical professional, so I am not able to comment on her specific situation.

Nonetheless, I would encourge you and your wife to seek 2nd and 3rd opinions just as Kim mentioned above. If I didn't....who knows where I would be right now. Undecided

As you know, all you have to do is send your wife's most recent films to MM specialists for their opinion. It doesn't cost you anything (except for postage) Wink

I know of 2 other MM individuals have decided to participate in a MM study as well (not sure if it's the same one you're referring to); however, I opted not to participate.

Outside of the study, one of these individuals was advised that her other side (she had surgery on one side already) was progressing, and although she didn't have symptoms, she decided to go ahead with the surgery. Now, she is experiencing twitching and frequent numbness post-surgery. Should she have waited and not been so anxious to get her 2nd surgery over with? Who knows... At this point it's water under the bridge...and we just have to see what the dr.'s recommend at this point.

Bottom line: I would wish that you and your wife seek additional opinions from MM experts in the field and then go from there... And yes, I am "J" of you being where you are.. Wink

We're all here to support you and your wife! Smiley

Take care,
Shan

« Last Edit: Jun 27^th, 2008 at 6:51pm by Shan »

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smitty39

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Re: NINDS Study
Reply #17 - Jun 27^th, 2008 at 7:08pm

Jeepnerd

Forgive my ignorance but how can you have good blood flow with a 95%+ blockage. I wonder if the doctors were talking about the collateral vessels helping the blood flow around the blockage. From what i know those blood vessels are the moya moya vessels that are extremely fragile and can rupture at any time. Hence the need for surgery.

I've been following your threads since they began. I find it very frustrating that even given the amount of testimony from people who've had the by-pass you still continue to question what people are offering. I'm not sure that taking a poll will help you at this point because I don't think you are ready to hear that surgery is the only viable option. As I've told another person who questioned surgery. I embraced the idea of surgery. It was the one thing that ensured that I would continue to watch my children grow up.

My by-pass was successful and I'm thankful for everyday. I'm also thankful that i had a surgeon who knew what he was doing and wasn't a "wait and see" kind of doctor. I, like others don't understand why you won't atleast send your wife's info to an experienced MMD specialist. I know "brain surgery" is a scarey thought but I think the thought of not having your wife around is scarier.

I hope you and your wife make the right decision. I know my frustration stems from the fact that I know your wifes life will be soooo much better after the surgery. I hope you see that and see the surgery as a good thing and not something you have to fear. Atleast that is how i've come to see it. I have unilateral MMD and if it ever blocks on the other side i'll be in that operating room as fast as they can get me in there. I don't post often but there are times when I feel I just have to say something. This is definitely one of those times.

Wishing you and your wife well,
Debbie

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Mar Ex Member	Re: NINDS Study Reply #18 - Jun 27^th, 2008 at 7:13pm Amen Debbie!! IMO, it can't be said better than that!!!
Back to top	« Last Edit: Jun 27^th, 2008 at 8:22pm by N/A » IP Logged

Shan

Old-Time Poster

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: NINDS Study
Reply #19 - Jun 27^th, 2008 at 7:22pm

in response to debbie's message above--

i too have unillateral MM, but my medical team has been closely monitoring my "other side." and...if it so happens that the "other side" shows signs of MM, i too would immediately schedule another surgery (with the concurrence of the medical professionals of course Wink

i guess i may not clearly understand your wife's situation. is it because she is frightened to have the surgery? if so, that's understandable. shoot-i had a colonoscopy and EDG last week and was scared about that! Embarrassed

however, i knew it had to be done in order for my gastoenterologist to take biopsies and rule out anything serious.

or is it that her medical team just does not feel surgery is needed? possibly they may have considered her other health issues she may also have in conjunction with MM and are trying to "stabilize" those issues prior to surgery... Smiley

again, it doesn't hurt to obtain additional opinions from MM experts. SOON!..like NOW! Wink

just my

aloha,
shan

« Last Edit: Jun 27^th, 2008 at 7:25pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Lore

MM.com Benefactor

Offline

My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: NINDS Study
Reply #20 - Jun 27^th, 2008 at 9:06pm

JeepNerd,

I have been dealing with MoyaMoya disease for 6 years with a brother who went misdiagnosed for 4 years had two strokes, a dissected right upper internal carotid artery a brain hemorrhage, couldn't speak and had no abstract thinking ability. He is extremely fortunate and we are internally grateful to DJ for finding this site which lead us to Dr. Steinberg at Stanford Univeristy. I am elated to say that today, due to DJ and Dr. Steinberg, my brother is alive and well. He had two STA-MCA (direct bypasses) at Stanford in May 2005. Today, he can speak, he has his abstract thinking ability back and a person would be hard pressed to know he had gone through all that he has.

I am not a doctor or a clinician but here are the hard facts and the "down and dirty" about MoyaMoya.

1. It is a FACT that MoyaMoya disease is a progressive disease. The vessels will continue to narrow overtime.

2. The collateral vessels form to bypass the blockage to compensate the oxygen-deprived region. A cerebral angiogram will show the network of new blood vessels, hence the "puff of smoke".

3. Revascularization (surgery) restores needed blood flow by re-directing the blood flow.

4. Medications treat symptoms NOT the disease. As an example, medications may be given if having TIA's or have stroked. Such medications as antiplatelet drugs, vasodilators or anticoagulants to help prevent future attacks. Also, meds to treat hypertension (high blood pressure) may also be prescribed. This is a temporary or bandaid approach and especially with a 95% blockage and having had a stroke.

5. WITHOUT SURGERY MOYAMOYA PATIENTS WILL MOST LIKELY EXPERIENCE MULTIPLE STROKES BECAUSE OF THE PROGRESSIVE NARROWING OF THE ARTERIES. WITHOUT TREATMENT, THE DISEASE CAN BE FATAL DUE TO A POSSIBLE INTRACEREBRAL HEMMORHAGE.

Although we have all been down this road and can share our experiences and knowledge as lay people, we are not doctors. It is of the utmost importance that you seek a professional opinion by a MoyaMoya expert who can specifically speak to your wife's current physical and clinical state. At that point, you can get your specific clinical questions answered and you will know how to proceed.

You can send your wife's films to Dr. Steinberg at Stanford and he will render a professional opinion AT NO COST.

Here's Dr. Steinberg's information:

Gary Steinberg, MD, PhD
Lacroute-Hearst Professor and Chairman
Department of Neurosurgery
Stanford University Medical Center
300 Pasteur Dr., Room R200
Stanford, CA 94305-5327

You may also want to contact Dr. Steinberg's most knowledgeable and experienced nurse coordinator:

Teresa Bell-Stephens, RN, CNRN
Phone Number: 650-723-5575

Lore

« Last Edit: Jun 27^th, 2008 at 9:10pm by Lore »

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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Shan

Old-Time Poster

Offline

MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: NINDS Study
Reply #21 - Jun 30^th, 2008 at 6:57pm

kim~
can you please send me or post the link to the washington paper you referenced above? that would be great info to share! ; Grin

so grateful that you came across that paper which was the "deciding factor" for you to choose surgery. Wink

Quote:

My personal experience has shown that there are neurologists out there who are treating Moyamoya who haven't enough experience or knowledge of this disease to recommend the proper treatment

i believe this 100% as my first AND second opinions did not properly diagnose me with MM and just tried to treat me with blood thinning medications (i.e. Plavix). i was even told that surgery was NOT an option! to this day, i don't know if they did not know what MM was, or if they just felt they could "treat" this disease... Embarrassed

thanks,shan

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Shan

Old-Time Poster

Offline

MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
Gender: female

Re: NINDS Study
Reply #22 - Jun 30^th, 2008 at 7:07pm

aloha jeepnerd,

i actually just opened the link to the study-- sorry, i had problems earlier with it. anyway, i finally read through the study and in all honesty, i now see why others who have responded here have responded in the manner that they have. i mean, i believe it's just out of worry and concern for your wife and her condition. Embarrassed

i read that the study started in 2006 and the estimated study completion date is 2011. for me, again, only speaking for myself, would not wait 5 years until the study is complete to have my surgery. as stated by others, this is progressive disease and only surgery can truly improve blood flow for MM disease.

the article itself says

Quote:

Some people never have a stroke while others may have several

yikes! i believe they may have good intentions for this study, but in reality, who would hold off on obtaining medical attention which could save their lives in exchange for being a statistic in a study?

this study actually makes me a little uncomfortable to know that some may have agreed to hold off on receiving medical attention to participate in this study.

just my Smiley

to you & your wife...

take care,
shan

« Last Edit: Jun 30^th, 2008 at 7:11pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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