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Baby diagnosed with MoyaMoya Syndrome (Read 14151 times)
mea
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Baby diagnosed with MoyaMoya Syndrome
May 30th, 2004 at 10:28pm
 
I just wanted to know if there was anyone out there in the same situation as our family.  My son, now 11 months old has recently been diagnosed with MoyaMoya Syndrome.  He has had two strokes, the first when he was 71/2 months and the other when he was 10 months.  He had strokes on both sides of the brain the first was in Feb. and it was on the left side of the brain and the second was April and it was the right side of the brain.  The second stroke was much worse.  They were not sure if he was going to make it out of the hospital.  Thank God he did.  He has trouble using his left arm, leg, and hand.  Mostly his arm and hand.  Every day it seems a little better.  He is about to start physical and occupational therapy this week.  The neurosurgeon is not 100% sure that he has MoyaMoya syndrome but all of the pediatric neurologist are.  The neurosurgeon had him go through a spec scan almost two weeks ago and we are awaiting the results of that to see if he is convinced and to see if surgery is needed now or if he wants to wait a while.  The neurologist called with the preliminary results and said that his brain didn't seem to need anymore oxygen when it was stressed, it seemed to require the same amount of blood flow when stressed as without it being stressed with this scan.  There was decreased bloodflow where the two strokes were located.  We do not really know at this time what part of the right side of the brain was affected because the stroke took up most of the right side.  Luckily he is so young that the brain should be able to rewire and maybe he will be okay.  I don't know, I don't understand everything.  I just wanted to know if there was anyone else out there with a story like ours.
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LisaH
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #1 - May 31st, 2004 at 12:34am
 
Hello & welcome!  So glad you found us.

I feel so bad for you and your son.  Poor little guy having to go through so much in such a small time here.  Cry  But don't despair!

I really only have two comments/suggestions.
First suggestion is to contact via e-mail or phone Dr. Scott in Boston.  You can find his info on this site under "surgeons".  He is known to be an awesome pediatric neurosurgen with a high expertise in MoyaMoya.   Many people on this board have had wonderful experiences with him.  Or, contact Dr. Steinberg in California- equally wonderful.  Or one of the other doctors on this board that people have had good experience with. All of them have a reputation of responding to e-mails very quickly and giving second opinions if you send films/test results to them.   I didn't get a chance to see where you live and which is closer to you.  Regardless, the thing your son needs most right now is a surgeon experienced with MM!  You'll find that everyone here can't stress that enough.  Experience, experience, experience.

Secondly, you will find on this board that once diagnosed with MoyaMoya, and especially after having a stroke, waiting for surgery isn't a good thing.  This is a progressive disease, there is no medication or any other remedy but surgery.  Strokes will continue to occur.  Although, I must say that your son's SPECT scan results sound promising.  What are they basing the possible MM diagnosis on?  Did they do an MRI/MRA?  Angiogram? 

Hang in there and know you are not alone! 
Lisa
P.S. I'm sure more people, especially those whose children have MM, will post a lot more but the board is slow right now because of the holiday.
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hillary
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #2 - May 31st, 2004 at 12:42am
 
Michell

First off, where are you located at?  and i ask this because there are a few doctors that are highly known for treating moyamoya.

I have a 9 yr old daughter who i just brought home from the hospital today from her second surgery, her first was last tues. (18th) and the second wed (26th).  She had no prior strokes or bleeding. 

She did very well through both surgeries and came home after 4 days.

other then a few headaches in the evening she seems to be doing ok.  We had Dr. Steinberg at Stanford Hospital.  He has done over 200 of moyamoya surgeries..and i love him.  He is AWESOME!!!

there is contact information on this website for his office, might be a good idea to get a second opinion from him or another doctor.  I know Dr. Scott in the Boston area is also well known for MoyaMoya.

Let me know if i can help more...but honestly i would have a second opinion with another surgeon just to double check.

Hillary and family
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Michell
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #3 - May 31st, 2004 at 1:29am
 
Thank you for the reply. 

We live in Opelika, AL.  We go to the Children's Hospital in Birmingham right now for everything.  I will look into these doctors you have recommended.  Thank you. 

Trey has had MRI's and an Angiogram.  They are basing the MoyaMoya diagnosis from the Angiogram.  As I stated, the neurosurgeon was not 100% satisfied with MoyaMoya from the Angiogram but all of the neurologist are.  So, now we are waiting for the neurosurgeon to tell us what he thinks based on the spec scan. 

Trey is currently on Lovenox and an Iron med.  They have told us if he gets dehydrated he is more prone to another stroke so we try to make sure he drinks or he will have to be admitted to the hospital for fluids. 

I have not thought of seeing a nother doctor or surgeon before, I guess it is because at the Children's hospital there are so many doctors.  I will look into these though and thank you for their names. 

Trey is about to have his first birthday in a little under a month.  I can not believe what he has gone through in this year, this past six months.  There is no family history of strokes.  According to what I have read about MoyaMoya he doesn't meet any of the normal criteria for this disease either.  I keep wishing it were a mistake, but then we would be back to the drawingboard on why our baby is having strokes.

Thank you so much for writing!!!

Michell
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hillary
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #4 - May 31st, 2004 at 1:36am
 
ask the doctors about something called an AVM...short for another really long word, but strokes can also happen with that as well....but again i would contact a moyamoya specialist

Hillary
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Rena
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #5 - May 31st, 2004 at 9:44am
 
Michell,
My son was the first in my family to have a stroke also, he was 11 years old at the time. It took the doctors a few months to give a possible MM diagnosis because they thought MM affected younger girls of Japanese descent (sp?) or the older population. When they told me it "might" be MM I started research and the only things he didn't match were the one's I stated above. He had the closing on the rightside, that caused his stroke, and narrowing on the left side shown in a MRI. It took another month to get an angio done to confirm the diagnosis.
I was never told about the dangers of dehydration. However, since my son had the stomach flu, and the dehydration from it is what caused his MM vessels to close and cause his stroke, I was very afraid of the flu again. I even had to take him into the ER for an IV when he got it again before surgery, I had to be the one to tell the doctors that it could be a problem.
At least you have some doctors on your side. Just have them send your sons records to one of the other doctors for a second opinion, that seemed to get the ball rolling here, although I still took my son to Dr. Steinburg.
Good luck and your family is in my prayers.
Rena
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PatM
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #6 - May 31st, 2004 at 10:07am
 
Michell---so sorry to hear about the tough time you and your son have been having.....he is so very young and all of this is so new and scary........I agree that Dr. Scott is supposed to be great.......There is a pediatric neurosurgeon at Columbia Presbyterian named Neil A Feldstein.......he has done more than 80 moyamoya neurosurgeries.....Since you are in Alabama. the closest place that I know of is New York City that has a pediatric neuorosurgeon with such extensive experience.....you will need to travel about 4 1/2 to 5 hours farther by car to get to Boston......Dr. Feldstein's e-mail address is naf6@columbia.edu.......there is a Columbia Presbyterian link on this website and you can find him on it.........his phone number and fax are on the Columbia link.....we are keeping your little one in our thoughts and prayers.....please keep us posted and let us know how you make out....God Bless you, your family and your beautiful baby.... We are all here to provide support...... Kiss.PatM
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Nancy_N.
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #7 - May 31st, 2004 at 11:32am
 
Michell,
         I'm sorry to have to have you join our family but your in the right place. What you need to realize is a good pediatric neurosurgeon and a good pediatric neurosurgeon that specailizes in MM are two different things, you need to have doctors that really know about MM. My daughter has surgery by Dr. Steinberg but she was 20 at the time. Dr. Scott is one of the very best for really knowing about MM with children and I'm sure when it comes to your sons health traveling isn't your top problem. Surgeons are meant to do surgery thats what they do but really knowing the diseaese is whats important. Thats where people who have run into trouble not having someone who SPECIALIZES in it. Read some of the old posts and you'll see how many have had good experiences with Dr. Scott. Just wanted you to be aware since your new to the disease that it is a complex, not well known about disease that you will most definately benefit from a Specialist knowledge. Dr. Scott's and Dr. Steinberg e-mail address are also on the site if you need them. Good luck and hang in there. My thoughts and prayers are with Trey.
                         Nancy
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PatM
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #8 - May 31st, 2004 at 5:36pm
 
If you check on the Columbia website, you will see that Dr. Neil Feldstein does specialize in moyamoya surgery.....it's on the Columbia website link......what I guess I should have said is that he has done 80 or so moyamoya surgeries.........just a clarification....PatM
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STrantas
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #9 - May 31st, 2004 at 6:00pm
 
Michell -  The angios are the way that MM is diagnosed.  And from what you described, you have been told exactly what many of us have been told.  Hydration is SO VERY important.  Anyway, I had my surgeries with Dr. Scott in Boston at the beginning of the year.  In my opinion he is absolutely wonderful.  And all the nurses and the rest of his team at the Children's hospital are awesome as well.  Everyone that has posted in response to your original post is absolutely correct.  Second and third opinions are very important...especially with someone who specializes in moyamoya.  Good luck and please keep us posted!

-Shari
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Michell
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #10 - Jun 1st, 2004 at 12:18am
 
SmileyThank you all for your responses.  I emailed both Dr's Scott and Steinberg last night and told them about Trey.  I also emailed his Neurologist in at Children's Hospital in Birmingham asking her what she thinks about him seeing a specialist.  I just want to do what is best for Trey. 

I hate to ask this, but is there a life expectancy for this disease?  I don't know much about it, just the basic--I think.  I have been led to believe that with the surgery everything will be okay, pretty much.  I haven't read alot about MoyaMoya because the Neurosurgeon here was not absolutely sure about the diagnosis although his Neurologist are.

Thank you for all of your help.  It is so nice to know that there is somewhere I can go for help and answers and support. 

Michell
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hillary
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #11 - Jun 1st, 2004 at 1:48am
 
Michell,

when i first found out about holly, i was terrified and i asked that same question about life expectancy...here is what i was told

Dr. Steinberg told me that because she had no prior strokes, or bleeding her prognosis is very good for normal childhood and adulthood....from what i have seen and heard, even with a stroke and/or bleeding the prognosis after surgery is much better....i'm sure many will tell you that.

I wish you the best, and hope you hear from the Doctors soon....we go back to Stanford on wed for her 1 wk post op check up.  She seems to be doing really well though

feel free to email if you want...

Hillary
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Michell
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #12 - Jun 1st, 2004 at 10:41pm
 
Does anyone know anything about Dr. Paul A. Grabb at Children's Hospital in Birmingham, AL?  I emailed Trey's Neurologist about maybe talking to a specialist about the MoyaMoya and she said that Dr. Grabb does the MoyaMoya surgeries, I already knewn that, but I didn't know what her opinion was about seeking a specialist.  I emailed Dr. Scott and Dr. Steinberg, I am awaiting a reply from them.  Would we be able to just send one of them films and not have to go to either of their offices or would we be visiting them as well? Smiley
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Nancy_N.
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #13 - Jun 2nd, 2004 at 7:00am
 
Yes you can just send the films. We overnighted Mandy's films to Dr. Steinberg and had an answer in a day or two I beleive Dr. Scott does the same but charges you. I hope this helps, any more questions just keep asking us.
                        Nancy
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ariannasmommy
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #14 - Jun 2nd, 2004 at 10:58am
 
Michell,
Dr Scott had us send all of Arianna's films and reports.  Once he told us that if he reviewed them and we decided to go ahead with treatment, there would be no up front charge because insurance would pick it up.  If we decided to not go ahead with surgery he would have to charge.  It is worth it either way.  Good luck.
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Nancy_N.
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #15 - Jun 2nd, 2004 at 12:45pm
 
I meant no offense to Dr. Scott I just wanted them to be aware there was a charge because you don't no peoples financial situations its not like is pennys.  I also don't think it is right being charged if you don't get the surgery THAT IS MY OPINION. I'm sure in certain situations it doesn't matter but in some peoples it may.
Again I didn't mean any offense to Dr. Scott I tell alot of people on the site how good he is.
                           Nancy
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #16 - Jun 4th, 2004 at 4:35am
 
Michell

Our daughter was 18 months old when she had two strokes - one on each side - in March last year.  It took a while for her to be diagnosed with Moyamoya and it wasn't until July that she had her operations.

She lost lots of movement when she had the strokes and, like Trey, the Doctors were very worried that she might not pull through, but over the following weeks and months she gradually regained almost all her movements.  She's now doing really well, and it's difficult to tell the difference in movement/development between her and her (twin) sister.

My point is: it seems true, certainly in our experience, that babies have an ability to recover extremely well from a stroke.  I hope that's some reassurance to you.

Andy

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STrantas
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #17 - Jun 4th, 2004 at 8:36am
 
Hey Andy -

That's really interesting that one twin had MM and the other didn't.  They did test the other twin didn't they?  And that's awesome that she made a terrific recovery!  Kids in general are so reslilent it's amazing.  Good luck to you!

-Shari
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Michell
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #18 - Jun 4th, 2004 at 12:45pm
 
Thank you all for all of the advice.  We have contacted Dr. Steinberg and he told us to send Trey's film to him and he will tell us what he thinks.  We are working on that now.  Dr. Grabb at Children's in Birmingham (the Neurosurgeon we have consulted with here) has had his office call us and set an appointment up to consult with him to do the surgery now that he has seen the Spec Scan.  We do not have any of the details from the findings of the Spec Scan other than the brain requires the same ammount of blood stressed as nonstressed.

Andy, I woul love to hear more about your daughter.  It is very encouraging to hear everyones stories.  Thank you all!

Michell and Trey
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AndyMac
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #19 - Jun 4th, 2004 at 1:18pm
 
Michell

Emily's history (briefly, to spare you lots of reading!) is that she had two strokes (one each side) within a few days of each other in March last year. She initially lost much of the movement of both arms and legs (worse on the right side). At the time, she was diagnosed with encephalitis (inflammation of the brain).

Over the following days/weeks, she gradually got most of her movements back. In May, she had an MRI scan (she was considered too ill to have one when in hospital immediately after the strokes) and it was only then that the doctors realised that she had suffered strokes and had Moyamoya.

She had an angiogram in June, and had the EC/IC by-pass operations on both sides in July, at Great Ormond Street Hospital in London. She recovered really quickly from the ops, and we had her home within a week.

She's now 2 yrs 9 months and is doing really well (fingers crossed!) You wouldn't really notice much difference between her and Natalie, her twin sister. Co-incidentally, we heard from Doctor Ganesan at Great Ormond Street today that the results of her follow-up MRI (she had it on Wednesday) are good - both new sources of blood have taken well.

Andy
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« Last Edit: Jun 5th, 2004 at 3:28am by AndyMac »  

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LisaH
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #20 - Jun 4th, 2004 at 6:48pm
 
That is wonderful news Andy!  Glad to hear some nice news in my otherwise bad news day!

BTW, was your other daughter Natalie ever tested for MM?  Do the docs think there would ever be a chance of her too having MM?  Not that anyone can predict the future but the twin thing is an interesting twist.

Lisa
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #21 - Jun 4th, 2004 at 6:57pm
 
Because Natalie shows no clinical signs of having Moyamoya, our doctor was very reluctant to perform an angiogram or MRI because, being a toddler, Natalie won't sit still for a minute and would have to be sedated.  In other words, sedating a minor who shows no sign of illness presents a bit of an ethical problem.

But having discussed it with our doctor again recently, she suggested a Doppler scan, which can be performed withour sedation.  This was done 3/4 weeks ago and the result was negative.

So we're more relaxed now - also because the girls are not identical twins.  But we'll obviously still keep a really close eye on Natalie, and of course on Emily too.

Andy
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Sara
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #22 - Jun 8th, 2004 at 4:48pm
 
Hello Everyone:

I have posted posts like this many times, but hear I go again:

I had my surgeries 14 years ago, and am 23 years old now. If you have questions aout the long term, I would say EVERYTHING WILL BE FINE!!

I did not have a MM specialist do my surgery. My neurosurgeon had never done one before, and Dr. Scott had done about 6 at that time. My doc consulted with Dr. Scott and did a wonderful job.

I actually find it intresting that everyone seems to almost argue about doctors. I guess given my experience, I was just lucky. I think that any well educated neurosurgeon should be able to perform the surgery. It seems like the nerologist is the major concern. That is the one you end up actually dealing with, right? Or do you all still consult with the surgeon after? Just Curious.

And if anyone wants to know about long term stuff, PM me!!!

Mitchell... everything will be okay, just take care of your precious baby boy, and get him the surgery he needs.

Take Care, God Bless

Smiley Sara

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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #23 - Nov 30th, 2015 at 5:25am
 
I know this has been a while but has anyone else had experience with their infant having strokes and diagnosed with Moyamoya? How has the follow up been?

My 10 month old daughter Letti suffered a stroke to her right side which caused her to have left sided weakness. That's when the did the MRI and MRA and found out she had moyamoya. That was already devastating. That was in Oct 9. After a week of being in the PICU she recovered well and started moving her left limbs. We had her surgery on Oct 19 for the right side. We wanted to make sure she recovered well before doing her left side, which also needed the surgery. We were supposed to go home in Wed Oct 21 and she was doing so well. After a nap on 10/21, she started seizing and we found out she suffered another stroke but now to the other side of her brain. She has right sided weakness now and back in the PICU. Subsequent CT scans show the stroke but it hasn't worsened in the last couple of days so that is good. The surgery to the next side is Nov 3. Meanwhile we keep her hydrated and wait. She was nursing just fine but then a few days after the second stroke she stopped nursing so now she has a NG tube. I can tell she is so frustrated at herself because her body isn't listening to what she wants it to do.

We are at an inpatient rehab now for the two weeks for intense rehab. She can finally sit up now and relearning to roll over. She still isn't eating so we still have the NG tube.

Thank you for your responses in advance.
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Re: Baby diagnosed with MoyaMoya Syndrome
Reply #24 - Feb 10th, 2020 at 11:31am
 
We live in Opelika, AL.  We go to the Children's Hospital in Birmingham right now for everything.  I will look into these doctors you have recommended.  Thank you.

Trey has had MRI's and an Angiogram.  They are basing the MoyaMoya diagnosis from the Angiogram.  As I stated, the neurosurgeon was not 100% satisfied with MoyaMoya from the Angiogram but all of the neurologist are.  So, now we are waiting for the neurosurgeon to tell us what he thinks based on the spec scan.
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