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juniorasp_01

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wyrik wile 3yrs old diagnosed
with moyamoya

Posts: 22
wichita, USA, KS, Kansas
Gender: female

wanting to wait on wyrik's surgery
Jul 3^rd, 2008 at 10:29pm

hey the neurosurgeon looked at wyrik's chart and decided he doesn't have typical moyamoya. it is a lesser form or something they are wanting to recheck him in 3 months via an mri. and they want to wait a while to do the surgery. like a couple years since he is only 3. so should i get a second opinion its a dr in ks city and i don't know what to do. i want him to be treated so we can avoid any serious problems but i don't know if i trust this dr or not. can i get some advice.

alisha

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Mar

Ex Member

Re: wanting to wait on wyrik's surgery
Reply #1 - Jul 3^rd, 2008 at 11:42pm

Hi Alisha,

My advice would definitely be to get a second opinion!! It’s very wise when dealing with a rare disease. You have absolutely nothing to lose, and it may very well save your son’s life. We often see the “wait & see” approach with doctors who do not have enough MM experience, and sadly we’ve seen some tragic consequences during that wait. Since we know MM is a progressive disease, and that there isn't enough knowledge in the medical communty yet, it’s a question of whether a patient is willing to take the risk of a stroke/hemorrhage or death with the wait & see approach or seek a second opinion from a MM specialist, who would best know if that's the safest road to take in their particular case.

If you need help finding a MM expert, there is information on the website, or any number of people here (including me) would be happy to help you.

Mar

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Lore

MM.com Benefactor

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My brother Kevin (Cubbie)
has Moyamoya

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

Re: wanting to wait on wyrik's surgery
Reply #2 - Jul 4^th, 2008 at 10:29am

Hi Alisha,

Ditto to Mar's post.

The fact you are questioning whether or not you trust this doctor sends up flags to me and suggests you need more answers and something to compare to the current opinion. As Mar mentioned, definately seek a second or even a third opinion preferably from a MM specialist.

I question the phrase "not typical Moyamoya". What's that mean? And what tests have been done and what are the results of those tests? Suggesting your son has Moyamoya (although not typical?) says to me don't wait get a second opinion ASAP and get more definative answers.

It's like Mar mentioned, what we have seen with the "wait and see" approach with a progressive disease like MM is stroke, hemorrage or both hence, the word progressive. MM disease is the progressive narrowing and closing of the carotid arteries depleting the oxygen supply to the affected area/region of the brain.

I am curious to know the interpretation of "not typical Moyamoya". Exactly what is that or what does that mean? I'm also interested in knowing what tests Wyrik has had thus far.

Please keep us posted on Wyrik and your findings and please continue to ask any questions you may have. We are here to support you through this journey.

Lore

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"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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MrsDeej YaBB Administrator Offline My life is what I make it....and it's beautiful! Posts: 126 Wichita, KS Gender:	Re: wanting to wait on wyrik's surgery Reply #3 - Jul 4^th, 2008 at 5:57pm Lore wrote on Jul 4^th, 2008 at 10:29am: Ditto to Mar's post. Ditto... Check your PM's. I accidentally sent you a message under DJ's profile!! LOL Hope to hear from you soon!! Steph
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EmilysMom

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I love YaBB 1G - SP1!

Posts: 20
Charlotte, USA, NC, North_Carolina

Re: wanting to wait on wyrik's surgery
Reply #4 - Jul 7^th, 2008 at 1:44pm

The doctors kept insisting that we wait and see if Emily got worse. We waiting and she kept getting worse. I believe if they would have operated sooner it wouldn't have taken her so long to recover. She still has a deficiet from the strokes. Please get a second opinion from an experienced Moyamoya dr. I have lived with guilt for the last two years because of not questioning the locals docs soon enough. My daughter was four years old and very bright before her strokes.
Lori

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Janko

Experienced Poster

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Take baby steps...one
step in front of the
other!!

Posts: 209
Kekaha, USA, usa, 326, 333, HI, Hawaii
Gender: female

Re: wanting to wait on wyrik's surgery
Reply #5 - Jul 8^th, 2008 at 1:58am

My neuro had a wait and see attitude...he told me everything looks fine we won't need to do anything at this time. Well....I still had some residual slurring and was still going through physical and occupational therapy when I decided that was not an answer I needed or wanted, I wanted a yes or no if anything could be done. I finally got the copies of all my files and films and had them sent to Dr. Steinberg. I'm sure glad I did!! Due to insurance difficulties it took me a few months to finally get through the red tape and was approved for surgery. Since my surgeries, I rarely slur my speech (except for when I get excited) and I have regained the complete use of my left hand (I'm left-handed) though I do not write as neatly as I used to.

Please....get copies of your films and records and have them sent out for a second opinion!! You do not want to take chances with MM especially since it is a rare, progressive disease.

just my Smiley

....

Aloha,
Jan

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Everything is not just black and white. Open your eyes, see what the world has to offer....

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Becky

Old-Time Poster

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

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

Re: wanting to wait on wyrik's surgery
Reply #6 - Jul 8^th, 2008 at 1:03pm

I had a sroke and My old nurologest made me go through a bunch of icky tests before she sent me to a nuroradiologest trying to find out why i had the stroke. Luckaly the nuroradiologest just got back from a convention where the discussed very very breifly the signs for MM. The nuroradiologest sugested it could be MM but I need to check with my nurologest. She was familiar with it but said it was impossible since i am not Asian. i am also luck to live in Minnisota so she said if I wanted a secone opinion to go to the Mayo clinic but they would tell me the same thing it is impossible since I am not asian. Well the nurologest at the Mayo looked at one of my nuro scans and said yep i do have it. I would have gone the rest of my life on bloodthinner for a disection stroke, and have the worst migraines every day if it wasn't for the second opinion.

Please Do NOT wait and see! as alot have said there are a bunch of doctors on this site that have MM experence. Please go to one of those in your area. Even if they are not in your network. There are also ways you can talk to your insurance to let you see them if they are out of network.

I will pray for you and Wyrik. Please get another opinion. It cant hurt only help you get more knowlage on what is going on.
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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juniorasp_01 New Poster Offline wyrik wile 3yrs old diagnosed with moyamoya Posts: 22 wichita, USA, KS, Kansas Gender:	Re: wanting to wait on wyrik's surgery Reply #7 - Jul 8^th, 2008 at 5:45pm good news for wyrik the insurance will let me go to another dr and dr steinberg wants to look at wyriks test results and he will determine if wyrik needs surgery or not. i am very happy and i would love for him to be treated by dr steinberg. thanks for all the support and encouragement
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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:	Re: wanting to wait on wyrik's surgery Reply #8 - Jul 8^th, 2008 at 7:19pm Hi Alisha, Excellent news! I'm happy to hear your insurance wasn't a huge abstacle in getting Wyrik another opinion from a MM specialist such as Dr. Steinberg. Keep us posted and let us know how Wyrik is doing. Hugs, Lore
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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: wanting to wait on wyrik's surgery
Reply #9 - Jul 9^th, 2008 at 5:38pm

Great news Alisha that you have considered a second opinion! ; Grin

As for your insurance, I'm wondering why insurance was needed? I had always believed opinions to be free of charge. Lore, I know you're knowlegable in this area...are opinions now being filed with the insurance companies as a 'service'? Smiley

I haven't seeked any opinions since my surgery, so I'm just wondering if there have been any changes...

Please keep in touch regarding Wyrik.

Take care,
Shan

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"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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juniorasp_01 New Poster Offline wyrik wile 3yrs old diagnosed with moyamoya Posts: 22 wichita, USA, KS, Kansas Gender:	Re: wanting to wait on wyrik's surgery Reply #10 - Jul 9^th, 2008 at 10:48pm dr steinberg is now taking on his case he is giving me a free opinion i just need to mail everything out to him. yeah i talked to his nurse she said they will take care of insurance and everything YEAH!!!
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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: wanting to wait on wyrik's surgery Reply #11 - Jul 10^th, 2008 at 3:50pm Great news! ; I didn't think there was a charge for opinions... Please keep us in the loop. I believe you have made the right decision to seek additional opinions. It can't hurt... I'm so happy ; Take care, Shan
Back to top	"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis IP Logged

Audge

Experienced Poster

Offline

Daughter Emily has MM

Posts: 107
Armada, USA, usa, MI, Michigan
Gender: female

Re: wanting to wait on wyrik's surgery
Reply #12 - Jul 25^th, 2008 at 11:09am

Hi, I am really glad that you're getting the second opinion from Dr. Steinberg. My daughter, Emily, is 13 and was diagnosed with Moyamoya. She has a slight learning problem but no other signs of anything wrong. Our neurosurgeon here, in Michigan, told us we could wait also. I had already been coming onto this web site though. I was very torn on what to do. I was, actually, kind of relieved when he said we could wait. But I "felt" that we needed to see Dr. Steinberg and I am glad that we did and Emily had her two surgeries in June. She didn't have anything further go wrong with her healthwise because we chose not to "wait". I kept saying to myself "wait for what? for something to go wrong and then act on it?" When Dr. Steinberg came out of Emily's first surgery he said that she had almost no blood flow to the right side of her brain!!! Every parent has to do what they feel is right for their child and I really think that we did by getting her taken care of right away. I hope that everything goes well for you and your family.
Audrey

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