Hi All,

I'm new to this board so I may have missed this info elsewhere.  I was just diagnosed with MMD in Oct of 2007.  I found an article online about a moyamoya center at Washington University in St. Louis.  A neuroradiologist there, Dr Derdeyn has gotten a large grant to do a five year study on adult moyamoya patients.

This has been good news for me because beyond the initial MRA and angiogram, my local doc's have been having a hard time determining the best way to do a blood perfusion test for me.  They finally set me up for a CT scan but again according to several 'expert' medical imaging doc's I've spoken with, without technicians or radiologists experienced with moyamoya, the CT would be of limited use for quantitative blood flow measurement.  Also there's some discussion among medical journals now, as to the relative risks vs benefits of CT scans (hundreds of x-rays of one spot).

Anyway, long way of saying, I will be getting a PET scan and some MRI's done this week in St. Louis for free as part of this study.  This allowed me to cancel the CT scan scheduled locally and since it's paid for, I didn't have to fight my insurance company over this testing.

I'm hoping the perfusion test will help me decide whether to head out to Stanford or not.  Well, maybe not whether to have surgery, but whether to do it now or later.  ;)

If you would like to see if you qualify for the study, Mary Cantanzaro's email is catanzarom@mir.wustl.edu.  She is the nurse organizing the patients for Dr. Derdeyn's study.

Can't say I'm glad to be joining this club, but I'm glad the club is here.

-M from Madison

-M wrote on Jan 14^th, 2008 at 11:51pm:

I'm hoping the perfusion test will help me decide whether to head out to Stanford or not.  Well, maybe not whether to have surgery, but whether to do it now or later.  ;)

M - Well, welcome to the "club"!  Sorry you had the need to find us - but I'm glad you did.  I'm also glad you found a study to participate in.

My question to you is - and I'm going to be blunt - what are you waiting for?  A stroke?  MM is progressive...it's not going to get better.  Brain surgery, any surgery, is better to go into when you are otherwise healthy.  Please, please, please do not wait until later to speak with Dr. Steinberg about getting your surgery done sooner rather than later.

-Shari

STrantas wrote on Jan 17^th, 2008 at 9:13am:

what are you waiting for?  A stroke?  MM is progressive...it's not going to get better.  Brain surgery, any surgery, is better to go into when you are otherwise healthy.

Amen sista! I know what waiting can do and what this disease is capable of. If you have MMD, a stroke is coming, you just don't know when. No matter what the test tells you, it would be very wise to contact Stanford for Dr. Steinberg’s expert opinion.

Mar

 Welcome to the group.I can promise you you'll always feel welcome and get some really great support and advice. I have to agree with the others that waiting for surgery is very risky.I know this from experience,my daughter was alomst 5 yrs old when she was diagnosed(exactly 6 yrs ago tomorrow), and in just 3 short months she suffered 5 storkes.We were very surprised how quickly her this disease progressed, it was very devestating ofr our family.One of her strokes was actually on the drive to Boston for her surgery.This put her in a very risky position for surgery but we knew we didn't have time to wait.She suffered 2 more strokes after her first surgery,one of these strokes left ehr like an infant.I'm happy to say that she's doing amazingly well today but it's been a very long hard road for her.Not that we could have done anything any differently,but I often wish that her surgery could have been before her health declined.Her life would be so much different right now.I don't mean to scare anyone just to make sure that no one has to look back and regret a decision to "wait" for surgery, to make sure that everyone thinks this through and gets the best Dr.'s and the best advice.I pray that the testing goes well and you can get in touch with Dr. Steinburgh,and get your surgery quickly.Please keep us posted.
Mary Grace

I know this is an extremely sensitive issue to people who have had to see their loved ones go through a debilitating stroke, which I have not done.

That said, I don't think anyone new to this disease should be told that everyone with the diagnosis should have surgery right away.  Each patient needs to look at their own circumstances and symptoms.  The disease is very different in different people.

I can only really speak to my own situation.  I'll describe my experience here as an example of what I mean.  I had a small vision loss in 2006. The next four months (MRI and lumbar puncture) showed some small brain lesions (strokes) and we ruled out Multiple Sclerosis.  I was put on a baby aspirin and told to follow up with an MRA a year later.  In 2007 NO new lesions were found so no strokes in a year, but this time they noticed the narrowed vessels.  We did an angiogram and found moyamoya in Oct.  I figured out pretty quickly that my local doc's didn't really know what to do with me.  I started doing research through the internet and doctor friends and read a lot of medical papers and opinions on moyamoya.  

I knew from my angiogram that my internal carotids were completely shut off, that I did not have as many moyamoya vessels as is typical with this disease (less to break since these vessels are delicate) and that my vestibular arteries were quite large and that I was getting a lot of collateral blood flow to the brain.  But to really know if my brain was in distress, I needed a blood perfusion test (like DJ's SPECT test.)  None of these factors guaranteed that I wasn't going to have a major stroke any day, but they all made it less likely for me than another patient with a different set of circumstances.

I have utmost respect for anyone that has gone through this process and who is going through it right now because beyond being faced with a life threatening disease, you are also in a position of having to become your own expert in this disease and making some very difficult risk/benefit decisions that don't have a lot of data out there to support them.

I understand that I am taking a risk by waiting, but I think it's important for me, given what I know about my own situation, to have all the data before I decide to have surgery.

Thank you all very much for your genuine concern for a fellow sufferer.  I know your advice comes from a very good impulse to help other people avoid what you've had to endure.  I'm hopeful I won't have cause to regret my caution.   :)

I'm sorry, I think you totally misunderstood if you thought anyone here is saying “everyone with this diagnosis should have surgery right away”. That is NOT what was said. We certainly don’t know everyone’s specifics and we’re not doctors. You stated in your original post that you were hoping the perfusion test would help you to decide whether to have surgery now or later, so we were simply advising a new member, the facts, as we know them, that waiting puts you at risk for a stroke and that waiting is the particular pitfall we see. If you read the advice in any post here you will find that we always say that no two MM cases are alike because of the individual factors involved and that the progression is different from patient to patient. We urge any new member to get a second opinion from a MM expert because of the lack of understanding of this disease in the medical community. And for the record, this disease is NOT different in everyone, in that EVERY person diagnosed with MMD is at risk for a stroke while waiting. That’s a fact!

You'll be in my thoughts and prayers.

Mar

M-

I felt the same way as you did when I first joined the board.  I came here for information to make my own decision in my own time.  But for me - the fact of the matter was, as I gained that knowledge, I felt like a ticking time bomb.  I was also told that I had a "silent" stroke sometime in my past...and then I had a mild full stroke which led to my diagnosis.  I also knew that I was having TIA's more progressively each day.  So, if the first stroke was silent...the second was was mild...that led me to believe that if I had another one - it was going to be more debilitating.  And guess what?  I did - I had a third stroke and it left damage this time.  

We just don't want that to happen to you.  My situation was not accute.  I didn't have the surgery right away....but I did go see a specialist right away - and I was scheduled for surgery by the end of the next month.  

What we don't want you to do is take a "Wait and see" approach.  I'm not trying to scare you in to surgery.  The fact is, everyone's situation is different...but we all have MM...and it could, Could, inevitably lead to stroke or hemmorage.

Please arm yourself with as much information as you can and take into consideration what those who have been there are advising.  

-Shari

Hi M

I hope you do have the ct-perfusion test.  I think too that hearing what others that have gone through with this disease is very important as well.  i was misdiagnosed for over six months with doctors thinking i had MS but it was a stroke that i had caused by MM.  i still don't have the full use of my left hand and at times i stumble over my words or can't think of the word i want to say.  i'm only 39yrs old and have a 12yr old and a ten year old child.  i wish i had the opportunity to have had a diagnosis prior to my stroke because no matter what, i wouldn't have waited.  i think what you will read and the advice you will receive from people that have been there and from any expert doctors of moya moya is the only treatment is surgery.  Don't get me wrong, regardless of what i've been through i have seen this whole situation as an opportunity as well.  it has brought my family closer and it has given me the opportunity to really appreciate life.  i don't think anyone on this site is trying to scare you but to give you information that may help you from being in the position that a lot of us have been in and to make sure you have the facts of this disease.  i feel very lucky that i didn't suffer a second stroke within the time of misdiagnosis until i had surgery, which was just in September 2007.  i wish you well in what ever decision you make.

Debbie

Like most people who hear conflicting medical opinions, I agonized over whether surgery was the best course of treatment for my MM.  I was initially told I didn't need surgery, then told that surgery was "risky" and "without good long-term results," then told maybe direct bypass surgery wasn't the best option for me...there were, afterall, other types of surgery available.  But all the doctors I consulted agreed on two points:  1.) MM is a degenerative disease that only gets worse, and I would eventually have a stroke(s).  2.)  There was no way to know when it would occur or how severe the resulting stroke damage might be.  

Although I'd apparently already had a stroke, I was fortunate enough to be diagnosed before any permanent damage resulted, but I'd watched my grandmother struggle with the aftermath of several  strokes and I wouldn't wish that on my worst enemy.  

When I found moyamoya.com, and read the heartbreaking stories posted on the guest page, it was quite sobering.  I read every web link I could find about moyamoya, and educated myself on the treatment options.  I did not want to have brain surgery if I could possibly avoid it...the prospect scared me.

Ultimately, having bypass surgery was a very personal decision, and one I came to believe would give me to best chance at a "normal" life.  

Once I had made the decision to have surgery, my goal was to be treated by the most experienced team of doctors available...I just had to convince my insurance company that Stanford made sense.  It was "do-able," especially since I live less than eight hours away.  As an added bonus, they were willing to work with my insurance company to draw up a treatment contract.  

I realize Dr. Steinberg is not the only doctor to have successfully treated patients with MM, but he has a well-documented track record and does extensive followup with his patients.  I was impressed by his staff, and by his dedication to study the long-term results of the surgeries he performs.  There are surgeons who do no followup at all with their patients whatsoever, so it may be difficult to know exactly what their track record is.  

I am now approximately 10 months postop, and doing much better.  Although not completely gone, my symptoms have improved, as has my quality of life.    

I posted this only because sometimes it helps to know other people have been there and can relate to the struggles you're dealing with.

Best of luck to you!