Hi Pat and Lisa,
Sorry that you are here too, but you are doing the right thing by getting second opinions. This disease does not allow you the luxury of a wait and see approach - it is best to act as soon as you find the results, so that a catastrophe does not occur. There will be other members who respond to your post who can advise you of your other queries - Lore is an expert with insurance claims for example. MM is one of those diseases where no one can tell you that this or that will happen - Jaxon could go years without anything happening, but it is basically a timebomb waiting to explode. When it is going to explode no one knows, but don't take the risk of listening to doctors who just want to play it by ear. It is your son's life and the quality thereof that are the focus here. I do understand it is extremely difficult for you to face with a son that young.
Hugs Moira

Dear Pat and Lisa,
Our son was asymptomatic until he had a stroke at the age of 7 and that's when he was diagnosed with moyamoya. I wish we could have known prior the stroke he had MM as damages from a stroke can be irreversible. He has had both surgeries done since and is doing quite well. However there are still residual problems from the stroke, psychological and physical.
I am not sure what is the best solution for your child but I would definitely recommend not to have the wait and see approach that the neurologists suggested.
The fact that the condition was discovered in a routine MRI is probably a sign that something should be done.
Hopefully you will get answers and more information from the professionals.
Good luck and all the very best to your family.
gazou

Thanks everyone!
     Your advice and support are fantastic, and we are going to be aggressive in our approach to this disease. The MM experts we contacted are indeed the ones mentioned above and we already feel confident that Jaxon will be well taken care of with either.
     Our minds were made up before we left that doctor's office that we weren't going to sit around and wait for tragedy to strike. All your posts confirm we are following the proper path so thanks for blazing this trail ahead of us.
     That doctor told us he gave the same advice to a couple in West Virginia (USA) a few weeks ago. We hope they are here reading this and also being more aggressive.
     Love, support and prayers already coming in from around the world for our son....This is the best holiday gift we have ever received and has made this a very wonderful Christmas.
     We do have one more question at this point: Any cure for the spontaneous public crying fits (ours not Jaxon's)? Even going to the grocery store is getting a little embarrassing. "Meltdown in aisle 6, bring a big mop."        ;

Pat and Lisa

    

Melt down on isle 6; bring a big mop… you made my heart smile, bless your heart. Keep that sense of humor. It’ll help you through the days ahead, but we’re supposed to be cheering you up.
That melt down is certainly understandable though. When parents get hit with the fact that their precious little baby boy has a rare brain disease, and then we go and hit ya with the fact he can stroke, I think if anything would bring on a major melt down, that certainly would. God love ya’s! But I gotta look at it this way… You are so very fortunate to have been diagnosed before any damage, and you’re taking a progressive approach to hopefully avoid any possible stoke. We know this disease can be treated and managed successfully, especially if you get a MM expert, so your precious little boy could live a perfectly normal, long and healthy life, God willing. You will certainly have many prayers on your side, so I don’t think you can get better than that. Just hang in there. Keep the faith.

My continued thoughts and prayers...


Mar

sorry let me correct myself about dr. steinberg which he actually said i needed further studies...instead of not at this time....sorry for the misleading information...

Hi Pat and Lisa -

just reading your post tonight and realizing that you are going through this right now just like me!
I'm wondering where you are holding.  I am in the process of figuring out if I need surgery or not and was also initially advised not to do anything.  Actually there is more to it, but it is not important. . .
I have an appointment on Tues with a top Dr for strokes in Columbia and have sent my reports and films to Drs Steinberg and Scott
am wondering where you are deciding to have Jaxon's surgery (I teach children his age).  Maybe we will end up being in the hospital at the same time
anyway I hope your decision process is going well and that you are not too stressed out
and my gosh - I can totally relate to the stress and crying factor
glad I chanced upon your post tonight
I hope you respond and that we can be in touch
I hope all goes well for Jaxon and his surgery
be well
--Jacqueline

I really hope the best for Jaxom and for your family.  I have an eight year old daughter and a four year old with leukemia.  And I have to say, getting diagnosed with moyamoya myself has been much easier than having your child be ill with something serious. 

My daughter with leukemia is doing wonderfully by the way.

I posted in another thread that I am asymptomatic and waiting to decide about surgery (diagnosed in Oct 07) until I have had all the tests DJ describes in his terrific informational post.  That having been said, my local neurosurgeon's first response to my disease was, "Keep taking your aspirin and we'll repeat your angiogram in a year."  I agree with the other posters here that this really is an *misinformed* medical opinion when talking about moyamoya.

There are people (I really can't speak to pediatric profiles) who are at less risk for a stroke or hemorrhage than others but you need to absolutely have a moyamoya 'expert' review that for you and walk you through the factors and risks.

I think it's terrific that our doctors seem to at least be able to recognize this disease more consistently than in the past, but there is still so much that you have to educate yourself about and not rely on just any doctor's opinion.  Each case is really unique.  And it sounds like you guys are doing a great job doing just that.  Good luck!

-M from Madison

Pat and Lisa,
   OK, I guess I am done lurking.  You asked the following;      
1. Anyone else here been asymptomatic and elected to have surgery?

2. If so, was insurance willing to pay?

3. Are there any of you who are just waiting and hoping nothing goes wrong--how long have you been asymptomatic after diagnosis?

Yes, I was asymptomatic.  And Yes I elected to have surgery.  Yes, my insurance was willing to pay.  And No I absolutely did not want to wait.  I mean wait for what?  A Stroke?!

I was diagnosed with MM in Mar 07.  The ONLY symptom I had were severe headaches, the first happened in late Dec 06.  When I saw my PCP for a regular check up in Feb, she scheduled me with an MRI/MRA just to “take a look” and was surprised and concerned to discover the blockage in my left carotid artery.   She sent me to a Neurosurgeon who, Thank goodness correctly diagnosed me, but since I had no other symptoms told me I was otherwise fine and to go home and “wait and see.”  Though I went home from my appointment with the Neurosurgeon greatly relieved I of course started searching for information.  The more I read the more apprehensive I became.

My PCP said that she had “read about MM in her text books, but had never met anyone with it.”  And she too started to research it.  (I am very grateful to have a great and aggressive PCP, who is not afraid to admit she doesn’t know everything!)  When I went back to see my PCP, less then two weeks later, we both thought we needed another “EXPERT” opinion.  She said Stanford, I said “oh you mean Dr. Steinberg?”  Isn’t the internet a great thing?  This was the first week in April.  My films and info was sent to Stanford, and within 2 days I received a call from Stanford saying they thought that I was a good candidate for surgery ASAP.  They wanted to schedule tests and prescheduled surgery for mid May. 

All I could think was WOA! Slow down this is happening way too fast.  Though I agreed to come out for tests I in no way agreed to have surgery.  Well, I did have surgery on May 16, 07 less then two months after being diagnosed!  It was the absolute right thing to do, WHY WAIT? 

I have had NO strokes, my MRI is completely clean, both pre and post surgery.  I am unilateral with MM on the left side only.   I will have to keep checking the right side annually to make sure it does not occur on that side, but otherwise I am completely fine!   I’ve been looking out for any MM survivor who has had NO indication of stroke on their MRI.  I have yet to find one.  I am very happy to be one and believe because I did take action quickly, that I will remain one. 

I have wondered if I had waited, how long would it be before symptoms occurred?  A few days, a month, maybe a year or more?  What I am sure is eventually they would have occurred. 

In hind sight this is what I have learned! 
I am very sure that Neurosurgery is very dangerous!  I have a friend who recently underwent surgery to remove a tumor at the base of her skull, she is having some problems (having to learn how to swallow again, weakness in arms and legs, unsteadiness and dizziness etc, this is 3 weeks after surgery) all due basically because of the surgery itself.  Invading any part of the brain/skull will raise many prospective issues, symptoms, problems.  My local Neurosurgeon was right to recommend waiting.  Because if he attempted surgery, I’m sure the risks of surgery would be too great.  What I am also absolutely sure of, when it comes to adult STA/MCA direct bypass surgery, is that I went to the BEST.   The precautions Dr. S takes with the hypothermia treatment, the fact that the entire staff at Stanford deals with this regularly etc. are all part of why I feel my decision was absolutely right! 

That is my  worth.  I guess that is why I lurk, when I do post it really is too long.  Sorry all.  Mar I don't know how you do it, but I am glad that you do.  You give great advice!  Actually everyone here does!  Providing a forum for debating and providing personnal experience is why this sight is so great. 

Thanks DJ,

Carol

My name is denise and i was diagnosed april of 2001 and i have been asymptomatic after my first 2 strokes and my doctors do not want to do surgery and they keep finding something else wrong with me. My doctors say not to do anything until I have another stroke,so I just sit here and wait for the next shoe to drop does anyone else feel the same way I feel 

Denise,

You have to be more proactive.  My sister had a wait-and-see doctor.  Well, she had a severe stoke which left her blind, on a feeding tube, briefs and a quadraplegic.  If I knew then what I know now I would have carried her on my back to Californis to see  Dr. Steinberg.

I an going tomorrow with my other sister to look at other nursing homes for Patty.

Please read all you can and do not go to a wait-and-see doctor.


Janice

Hi, I am new here.  My daughter is 13 years old and also has NF.  She had "spots/lesions" on her brain when they did an MRI as a baby.  They wouldn't do another MRI because she never showed anything to be wrong with her.  She has a learning problem but gets decent grades.  I took her to a speech pathologist and finally kept taking her to doctors until we got the MRI done.  Then  6 months later they did a comparison MRI and then an MRA.  She was diagnosed with MM.  We are currently seeing a Dr. Sandeep Sood at the Children's Hospital of Michigan.  Emily goes for her cerebral arteriogram on May 14th.  When they did the spect/diamox test they found that the blood that was getting into the right side through auxillary arteries (her right side is completely closed off) that the blood flow actually decreased because the left side was "stealing" the blood.  So it looks like surgery.  I don't want to wait until she has any strokes or anything else go wrong!  After reading a lot on this site I'm worried about the aftereffects of the surgery. I will keep reading.

Thanks for your post.  Dr. Steinberg should have Emily's information today.  When I was writing him a letter about Emily I then thought, "She must have had this six months before this MRI in Februrary and they didn't diagnose it. "  It doesn't happen over night.  I am a nervous wreck hoping to get her taken care of before something happens to her.  I hope I will hear from Dr. S. soon!  According to the MRI and MRA she hadn't had anything bad happening yet but this was at the beginning of April.