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KathyD

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Double Dose of MoyaMoya
May 7^th, 2009 at 10:34pm

My two boy ages 10 and 8 were both diagnosed with MoyaMoya about a week ago. We have been to the Children's Hospital here in Chicago 9 times in the last 3 weeks for a multitude of testing. My oldest son was first hospitalized 3 years ago when he suffered what looked like a stroke on the left side of the body. He was in there for 3 days and had several test done, but all came up negative. The diagnosis at the time was Todd's Paralysis and that there was nothing to be done. Over several years he would have TIA's about every 3 months or so. We finally decided to go back to the neurologist to have a second look, and prior to making the appointment, my youngest son started exhibiting the same symptoms, so we made the appointment for both. The Neurologist ordered EEGs for both, and only an MRI for the youngest since the original MRI and MRA 3 years ago on my oldest 3 years ago came back negative.

When the MRA on the youngest came back positive for MoyaMoya, The Neurologist ordered the MRA for the youngest and both an MRA and MRI for the oldest. The test came back positive for both. We will be going back in a couple of weeks to meet a new doctor, and they have ordered angiograms for both.

As a side note, they both have been diagnosed with coarctation of the Aorta and High Blood Pressure. Because of this, the youngest has already had 2 angiograms 1 for the heart, and one for the kidneys and the oldest had the 2 in 1 angiogram of both the heart and the kidneys. (The kidneys were done to see why the blood pressure was high) My kids are angiogram pros!

We are looking for any word of advise, or wisdom to keep us from going crazy. Cheesy

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« Last Edit: May 7^th, 2009 at 10:38pm by KathyD »

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tallyman31 New Poster Offline I love YaBB 1G - SP1! Posts: 4 Tallahassee, USA, usa, 430, 259, FL, Florida Gender:	Re: Double Dose of MoyaMoya Reply #1 - May 7^th, 2009 at 10:50pm Just keep your chin up. I will pray for your boys.
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Little Luca

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Whatever it takes

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Somerset West, South Africa
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Re: Double Dose of MoyaMoya
Reply #2 - May 8^th, 2009 at 3:09am

Hey Kathy

Moyamoya itself is very treatable/correctable if caught in time. Why I say 'if caught in time', is because one of the symptoms of moyamoya is strokes, and it's the strokes that do the damage.

The fact that both your boys have been diagnosed (and will hopefully get surgery) before either of them has had a major stroke, is a huge positive. Don't get me wrong, your boys still need to have brain surgery to correct the moyamoya, so there are still dangers associated with this type of surgery, but you've hopefully caught it early enough to give them a shot at a 'normal' life.

It's important that you consult with a neuro-surgeon who has moyamoya experience. Check your surgeon and neurologists moyamoya credential, but by the sounds of it, this isn't an unheard-of disease to them, as it is with so many doctors. If you have concerns over their ability, check the section of this web-site called Surgeons with Bypass Experience' and see if there's someone in Chicago.

The are also 3 or 4 possible surgical techniques to correct moyamoya. Again, an experienced moyamoya (or bypass) surgeon will advise you best on which procedure is best for each of your boys, taking there individual cases into consideration.

Most of us, I would imagine, were rocked by ONE diagnosis of moyamoya in the family, but to have both your sons in this position is extremely difficult I'm sure. Just know that you're not alone. You've found a community of survivors here and if you need it, we'll help you get through this.

Keep faith in your boys strength, they will amaze you. I will also be sending lots of thoughts and positive energy.

Stay strong
Mark (Luca's Dad)

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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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Carmel New Poster Offline I Love MM.com! Posts: 15	Re: Double Dose of MoyaMoya Reply #3 - May 8^th, 2009 at 10:03am We just found out that our daughter is battling this. I can't imagine another child as well. You are in our prayers. Take Care The Bairds
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PaulaMart Junior Poster Offline I Love MM.com! Posts: 84 Spain Gender:	Re: Double Dose of MoyaMoya Reply #4 - May 8^th, 2009 at 6:15pm Hi Kathy, I'll send you a message because I have a daughter with MM who has been operated one month ago in Boston (we are from Spain) and she has too aorta coartaction and stenosis in the celiac artery and renal one ... your case is very similar our ... Paula
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Shari K.

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Re: Double Dose of MoyaMoya
Reply #5 - May 8^th, 2009 at 6:33pm

Hi Kathy,

I live in the Chicago area as well (Addison). My DH has MM and had surgery at Northwestern in Dec. I really didn't agree with the doctor pertaining to the followups, so I thoroughly investigated other doctors in the Chicago area, to no avail. They just didn't have the knowledge that I felt was needed when it came to MM. Because of the people on this board, I convinced my DH to get a second opinion from Dr. Gary Steinberg from Stanford. I know there is a lot of talk about the good doctor out of boston too. Please don't count out the fact that you may have to look elsewhere for good medical care for MM.

One of the tests that measures the blood flow is called the SPECT test. In all my research, I couldn't even find a hospital in Illinois that does this.

I recommend that you look into another opinion from eith of the two listed above. My DH got the call from Steinberg's office on St. Patrick's day and we were out the on the 31st of March with surgery on April 8th! Everyone and everything out in California was wonderful. Everyone knew what the right hand was doing and it all went very smoothly!

Praying for you. Feel free to message me if you wish.

Shari

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Islandentity

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My son Robert has MM

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Drummond Island, USA, usa, 387, 60, MI, Michigan
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Re: Double Dose of MoyaMoya
Reply #6 - May 9^th, 2009 at 8:07am

Kathy,
Although its sounds as if you have figured this out, listen to the above posts, be proactive when looking for a Dr. My son was diagnoised at 10 years old after 4 years of appointments at well known childrens hospitals in Michigan, we consulted with one surgeon here in Michigan and it turned out he had assisted with on surgery, we then sent roberts films to 8 Dr., We ended up at Standord where Dr. Steinberg preformed a Bi-lateral STA-MCA direct Bypass, the other Dr we had talked to said this surgery dosent work. 3 years later my son has had one very minor TIA. I cant say enough good things about the knowledge base on this site. Your in the right place, and our thoughts are with you

Mike (Islandentity)

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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin

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LisaH

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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: Double Dose of MoyaMoya
Reply #7 - May 10^th, 2009 at 12:04pm

Hi Kathy,

Which Children's hospital in Chicago are you going to as there are several? I know that the University of Chicago, Comer Children's has had a lot of experience with MM. Not so much regarding adults but there are a couple of surgeons there that have quite a bit of experience with MM in children and that I would feel comfortable bringing my child to. My heart goes out to you but know that, while not curable, MM is highly treatable with surgery and I am certain you will have a happy ending at the end of this long road.

Shari- It is not true that the Chicago area hospitals do not have SPECT scans. I've had several over the years at a couple of different hospitals. I do agree with you, that at this time, I'm not thrilled with the surgeon options for adults in this area when it comes to MM.

Lisa

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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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KathyD

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Re: Double Dose of MoyaMoya
Reply #8 - May 10^th, 2009 at 10:06pm

Little Luca wrote on May 8^th, 2009 at 3:09am:

Hey Kathy

Moyamoya itself is very treatable/correctable if caught in time. Why I say 'if caught in time', is because one of the symptoms of moyamoya is strokes, and it's the strokes that do the damage.

The fact that both your boys have been diagnosed (and will hopefully get surgery) before either of them has had a major stroke, is a huge positive. Don't get me wrong, your boys still need to have brain surgery to correct the moyamoya, so there are still dangers associated with this type of surgery, but you've hopefully caught it early enough to give them a shot at a 'normal' life.

It's important that you consult with a neuro-surgeon who has moyamoya experience. Check your surgeon and neurologists moyamoya credential, but by the sounds of it, this isn't an unheard-of disease to them, as it is with so many doctors. If you have concerns over their ability, check the section of this web-site called Surgeons with Bypass Experience' and see if there's someone in Chicago.

The are also 3 or 4 possible surgical techniques to correct moyamoya. Again, an experienced moyamoya (or bypass) surgeon will advise you best on which procedure is best for each of your boys, taking there individual cases into consideration.

Most of us, I would imagine, were rocked by ONE diagnosis of moyamoya in the family, but to have both your sons in this position is extremely difficult I'm sure. Just know that you're not alone. You've found a community of survivors here and if you need it, we'll help you get through this.

Keep faith in your boys strength, they will amaze you. I will also be sending lots of thoughts and positive energy.

Stay strong
Mark (Luca's Dad)

Hi Mark. I thank you for taking some time to write us back. As you know this news to hit any family is shattering. I look at my boys with amazement. They are such a gift to us . Their diagnosis will not break us it will make us a better family. I can't lie to you and say that I'm not scared ,because I am. I've never been so scared in my life. It really helps that you and every one on the board members know exactly how we feel. I just want this hole nightmare over. We see the next Dr. on may 20th to discuss when the boy will have there angiogram. Thanks for your advice. Take care.
Kathy D.

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Double Dose of MoyaMoya
Reply #9 - May 11^th, 2009 at 12:27pm

Kathy D,
Welcome to the MM family!I am from MN and I went to the Mayo clinic there for my diagniosis and surgery. I can not stress enough that you HAVE to have a MoyaMoya expert when getting diagnosed. If any of your nuerologest say "lets Wait and See" RUN AWAY!! i don't want to scare you but MM sould never be a "wait and See" there are treatments for this, and yes they are surgery. The doctor I saw at the Mayo is:

Contact Info: Secretary 507-284-5317
   Nurse 507-284-2820
   His Voice mail 507-284-2511
   Fax       507-284-5206

Dr. Meyer's Office Address
200 First street SW
Rochester, Minnesota 55905

He was wonderful. He did all the nesscary testing to see what type of surgery would give me the best results. He explained the surgeys extreemly well, so well no one had any question that did not go unansweredMM is diffrent for everyone, what I had done may not be what one of your sons needs and it also could be diffent for your other son. I will pray for your family's swift daignosis, and for you to have srength in this difficult time.
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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Michele Experienced Poster Offline I love YaBB 1G - SP1! Posts: 169 Yankton, USA, SD, South_Dakota Gender:	Re: Double Dose of MoyaMoya Reply #10 - May 11^th, 2009 at 3:49pm http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1225224749 A Chicago area MMer. I lover her story and determination. God Bless You All Michele
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KathyD

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Re: Double Dose of MoyaMoya
Reply #11 - May 30^th, 2009 at 3:04pm

I just thought I would update you all on what has been going on over the last couple of weeks. My youngest son Michael was complaining of headaches and the Neurosurgeon at Christ Hospital sent us to the University of Illinois Medical Center for an Angio and NOVA MRI (Which appears to be similar to the SPECT that has been mentioned on the board.) The NOVA does a 4D image including blood flow and direction. The MRI showed that there was already some minor damage to the front lobe, and that he would need by-pass surgery. His symptoms were on the left side of the body (Right brain), but the MRI and Angio actually showed more blockage on the left side of the brain. Michael had both the Direct and indirect bypasses on May 20. He came out of Surgery with no major issues, by the first 3 days home, he was experiencing TIA's still on his left side. Since they were more frequent, we brought him back in the Hospital where they may be performing the right side coming up this week.

Between Micheal's Angio/MRI and Surgery, Max, our oldest son, was in for the same testing. Luckily, he only has major narrowing on his right side, with only minor on the left, which they will require monitoring. We have not set up his surgery, but it will probably be towards the end of June or early July, barring any increase of symptoms.

The Surgeon who is performing the surgeries is Dr. S. Amin-Hanjani. When she was giving us the results of the tests and giving us the run down on what type of surgery they were going to perform, she was answering all the questions we had, before we even had the chance to ask them. This made us comfortable that we were in good hands.

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Reagan

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Lee's summit, USA, usa, 302, 159, MO, Missouri
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Re: Double Dose of MoyaMoya
Reply #12 - May 30^th, 2009 at 9:27pm

Kathy,

Thank you for the update on your two children. I will continue to keep them both in my thoughts and prayers. I am also glad that you feel confident and comfortable with your child's surgeon. That is one of the biggest reassurances whether it be from a parent's aspect or a patient's aspect. Continue to keep us updated.

Reagan

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Little Luca

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Whatever it takes

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Somerset West, South Africa
Gender: female

Re: Double Dose of MoyaMoya
Reply #13 - Jun 1^st, 2009 at 3:10am

Hi Kathy

Thanks for coming back to us. I'm really hoping that by the time you read this everything in Michaels head would have settled down and the TIA's a thing of the past.

I know it's probably not much consolation at this stage, but I'm sure the boys are gaining strength from each other and this whole experience will form a very strong bond between the two of them.

Lots of stength to your family
Mark (Luca's Dad)

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1st stroke in September 2008, age 10 months
Bi-lateral mm diagnosis
2nd stroke in November 2008, age 1 year old
Left side surgery in December 2008
13 years on now
Doing just great!

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PaulaMart Junior Poster Offline I Love MM.com! Posts: 84 Spain Gender:	Re: Double Dose of MoyaMoya Reply #14 - Jun 1^st, 2009 at 4:12am Hi Kathy, Your family will be on my mind during this difficult moments, please be aware that we a lot of people are here to help and support you. I think you are a very brave person and sure, a better mother.
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Lmom Junior Poster Offline I Love MM.com! Posts: 53	Re: Double Dose of MoyaMoya Reply #15 - Jun 1^st, 2009 at 1:37pm Kathy, I am glad you have a surgeon you feel comfortable with! Best of luck to both of your boys. Jody
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elaine

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Sanford, USA, usa, 465, 285, FL, Florida
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Re: Double Dose of MoyaMoya
Reply #16 - Jun 1^st, 2009 at 11:07pm

Kathy,,,,,,WOW 2 with Moyamoya Sad

What state do you live in ??

Also I want to let you know that in 1997 I woke up and when I stood up,,,,I just fell over broke my foot Cry

spent 2 weeks in the hospital as there mystery patient Because MRI showed I was blocked on my left side of my brain But was paralized on my side left side ( and left controls right ) so they said I had MS----But a spinal tap ruled that out Undecided

Then the Angiogram showed I was 100% blocked on the left side and 70% on the right side and the right side was working to hard to suply the left side,,,,,So it actually was a right sided Stroke....... Angry

Today I still have parital paralizes in my left leg and have a limp but am doing fine concidering all I have been thru

My Prayers are with You and your Family

KEEP US POSTED Wink

Elaine Calvert

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Elaine

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Cherry (LuckyMe)

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Get busy on living or
get busy on dying?

Posts: 91
Chicago, USA, IL, Illinois
Gender: female

Re: Double Dose of MoyaMoya
Reply #17 - Jun 3^rd, 2009 at 4:52pm

Kathy,

I'll pray for both of your son everyday!

I'm in Chicago area. I had right brain by-pass last August. Now I'm experiencing symptoms on my right side of the body. I've send MRI/MRA to Dr. Steinberg, maybe I'll need another surgery on left brain soon.

Let's get through this together. As a MMD patient and a mom myself, I know it's not easy to deal with all these, but we need to be strong for our kids to lean on.

After your sons recovered from their surgerys, maybe we can get together to celebrate! Seems we have quiet a few MMD from the metropolitan Chicago area.

LuckMe

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Cherry (LuckyMe)

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Chicago, USA, IL, Illinois
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Re: Double Dose of MoyaMoya
Reply #18 - Jun 3^rd, 2009 at 4:53pm

Kathy,

I'll pray for both of your son everyday!

I'm in Chicago area. I had right brain by-pass last August. Now I'm experiencing symptoms on my right side of the body. I've send MRI/MRA to Dr. Steinberg, maybe I'll need another surgery on left brain soon.

Let's get through this together. As a MMD patient and a mom myself, I know it's not easy to deal with all these, but we need to be strong for our kids to lean on.

After your sons recovered from their surgerys, maybe we can get together to celebrate! Seems we have quiet a few MMD from the metropolitan Chicago area.

LuckMe

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Cherry (LuckyMe)

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Get busy on living or
get busy on dying?

Posts: 91
Chicago, USA, IL, Illinois
Gender: female

Re: Double Dose of MoyaMoya
Reply #19 - Jun 3^rd, 2009 at 4:53pm

Kathy,

I'll pray for both of your son everyday!

I'm in Chicago area. I had right brain by-pass last August. Now I'm experiencing symptoms on my right side of the body. I've send MRI/MRA to Dr. Steinberg, maybe I'll need another surgery on left brain soon.

Let's get through this together. As a MMD patient and a mom myself, I know it's not easy to deal with all these, but we need to be strong for our kids to lean on.

After your sons recovered from their surgerys, maybe we can get together to celebrate! Seems we have quiet a few MMD from the metropolitan Chicago area.

LuckMe

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