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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Finally found people who know what we're goin thru

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Finally found people who know what we're goin thru (Read 4652 times)

giznot

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Finally found people who know what we're goin thru
May 13^th, 2009 at 1:57am

I actually first posted this yesterday morning but was advised I'd get more replies this way. Still tryin to find my way around the site...little computer illiterate sometimes LOL

Reply #12 - Yesterday at 4:27am Alert Board Moderator about this Post! Quote Modify Remove
My name is Jim and my girlfriend Samantha was diagnosed in Dec. 2008. After getting out of the hospital she was doing well on baby aspirin for a while but then the other side of her body started to be affected. The neurologist switched her to another medicine and told her to come back in 4-6 weeks. Well it's been just two weeks and the TIA's seem to be coming with greater frequency and they're happening on both sides. The doctors are fine and all and I'm sure they're great doctors in their own rite but I they just don't have the experience with the disease and they just don't seem to have the sense of urgency I'd like to see when dealing with such an important thing. We've got two little children that need their momma.
So I guess my point here is I'm glad to be a part of this site. It has been extremely helpful and I'd really appreciate some help if I could. What I'd like if possible is info on how to contact Dr. Steinberg by email if possible and what exactly to expect when we contact him. Is there anything else we should have ready to send him besides her medical records. Any ifo would be great. Thank you all so much to everyone

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Mar

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Re: Finally found people who know what we're goin thru
Reply #1 - May 13^th, 2009 at 8:35am

giznot wrote on May 13^th, 2009 at 1:57am:

Is there anything else we should have ready to send him besides her medical records.

Hi again Jim,

I think one of the first things you should do, if you haven’t already, is go to the radiology Dept. where Samantha had her Angio/MRI/MRA, and have her fill out the necessary paperwork to request COPIES of her recent films. Express the urgency of getting these copies ASAP. This is what any doctor would need for a second opinion. Then when you pick up those copies, I would FEDEX them overnight, so they will get there quickly and ready for Dr. Steinberg when he does his case conference reviews with his MM team.

Mar

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giznot

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Re: Finally found people who know what we're goin thru
Reply #2 - May 13^th, 2009 at 11:13am

Hey Mar,
How are things and thanx for the reply. Getting to what you said, that is exactly what we did. A few days ago when I was on this site as just a guest and reading all of the posts from members it all just hit so close to home with the inexperience of the doctors to the fact that the doctors around here seem to be more interested as treating Samantha as a case study cause "WE never seen this before". Once I got through reading the other day it just kinda made me realize we had to do something a little more so I had her immediatley call to get every record and image that she has on file at that hospital in order to try to speed things up. I wrote an email to Teresa in Dr. Steinberg's office last night so I hope to hear back from her soon. Now I'm trying to start the process of how to finance the surgery when it gets scheduled. Insurance company here we come. LOL
Anyway one last thing. We have two children and I know that pregnancy puts some stress on the body. Well our first child who is 2 and a half now was determined to have had a stroke while still in the womb. We found this out because he was having seizures raght after birth. He was on an anti seizure medication for about a year and a half but has since been weaned off of it and has had no further problems and all follow-ups have been good. Now would you happen to know if this instance and Samantha's moyamoya would be related in anyway? I have not found in my research anything about that. And the doctors keep saying it isn't related but as I said before their experience level isn't very high on this subject so I'm not sure if they are right. Anyway...I'm off for now. I'll be in touch.
Jim

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Mar

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Re: Finally found people who know what we're goin thru
Reply #3 - May 13^th, 2009 at 11:00pm

WTG Jim! I again commend you for your sharp instincts in getting copies of Samantha’s films. Hopefully it’ll help you get some answers ASAP. Teresa is usually great about getting right back to you with the information you’ll need.

I certainly wouldn’t know for sure if your son’s case is related or not, but I will tell you that seizures are a common symptom of MMD. I don’t know what tests your son has had for the doctors to be able to rule out MM, but I do know the definitive diagnostic test for MMD is an angiogram, so if your son has not had an angiogram, there is no way they can say it isn’t related, nor can they rule out MMD for sure. Especially if they’re not experienced enough with this rare disease. I would get a second opinion ASAP.

All I can tell you is what we know thus far, and that is… the cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities. There appears to be a genetic link, so the conventional wisdom is to watch any child for symptoms. I don’t mean to frighten you, but OMG, a stroke in the womb, wow; there isn’t a bigger MM symptom than that. I couldn’t get my child to a MM specialist fast enough. You may be wise to get copies of your son’s films (if any) to Dr. Steinberg as well. I would definitely be concerned!!

Keep doing what you're doing Jim. Read all you can about this disease and arm yourself with knowledge. There is such a huge lack of knowledge and understanding about this disease throughout most of the medical profession, so you'll need that information to help you make informative decisions ahead of you.

Keeping you all in my prayers.

Mar

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giznot

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Re: Finally found people who know what we're goin thru
Reply #4 - May 14^th, 2009 at 12:52am

Wow were you guys right! The people at Dr. Steinberg's office are amazing. Just one day and I received 3 emails from the ladies there. Usually we're lucky enough to even get her doctors around here to move up an appointment after a TIA. Just feels great to be getting somewhere.

Also, Mar, as for my son, no he hasn't had an angio. He's had numerous EEG's and MRI's. We have all of his records I believe so maybe we'll look at getting those copied and sending them along as well. Well time to get some much needed shut eye. Our thoughts are with everyone

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Little Luca

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Re: Finally found people who know what we're goin thru
Reply #5 - May 14^th, 2009 at 4:37am

Hey Jim

Sounds like you are on the right track now.

We had similar experiences with the doctors here in South Africa getting quite excited about Luca as a case study because of the rarity of this disease, particularly in such a young child. One can't really blame them because, at the end of the day, they need to gain experience. But we just weren't prepared for Luca to be anybodies guinea pig and shifted our entire thought process to an experienced neuro-surgeon.

Your sons situation holds particular interest for me because there is a big question mark over when Luca contracted the disease. She was diagnosed at 10 months after having a stroke, and a number of the doctors are baffled by how such a young child could have had it so extensively. This lead them to believe that one of the possibilities is that she contracted it while still in Nicky's womb.

There is a very real possibility that your son has it too and there is no question you should get all his info to Dr Steinberg also.

Good luck and stay strong
Mark (Luca's Dad)

« Last Edit: May 14^th, 2009 at 6:42am by Little Luca »

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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Islandentity

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Drummond Island, USA, usa, 387, 60, MI, Michigan
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Re: Finally found people who know what we're goin thru
Reply #6 - May 14^th, 2009 at 7:35am

Jim,
If you think just getting quick replies from the Stanford staff is amazing just wait til you see them in person, My Son was dx with Moyamoya a 2.5 years back, after many missed diagnoises and TIA's.
Due to the severity of Roberts Case Dr. Steinberg cancelled some appointments to do Roberts Surgery less then a week later, They dont mess around out there. and are very Patient mind set.

Best of Luck
Mike

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

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Carmel

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Re: Finally found people who know what we're goin thru
Reply #7 - May 14^th, 2009 at 7:52pm

Hi there,

Just wanted to stress to you how important is it to find a doctor who will get your boys an MRA at least or better yet a angigram.

Our daughter was just diagnosed with MM 3 and half weeks ago after suffering a major stroke. She has just had surgery. The family history is as follows. Her Grandma had a stroke at 59 yrs old and passed away. The stroke was due to blockage in her neck and sent a clot up to her brain. Her bio Mom had a stroke at 34 yrs old...due to several anurizums. The doctors here are pretty certain that there is some family history link and after talking to the genetics people at great lenght ..a moyamoya patient has a 50/50 chance of passing that on to there children.
To me ..those aren't great odds and worth getting there completly checked ASAP before one of them has possibly any damage from strokes.
I wish you luck with your journey. I read the boards and feel so terrible for those who have to pay for these surgeries ect. In Canada with our Health Care everything has been covered. Nothing but parking has come out of pocket for our family ..it's just amazing. One thing I've always said is ..in the hospital's here we are all equal ..a millionare is getting the same health care treatment as someone on social assitance...I can't imagine having the finacial burden along with the stress of everything else youre going threw.
You are in our prayers ...and on the right track
The Baird Family

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Re: Finally found people who know what we're goin thru
Reply #8 - May 15^th, 2009 at 1:40am

My heart and best wishes go out to all of you with children having mm, waiting for surgery, exploring this new way of thinking about life.

This is in regard to having mm in the womb.
I had surgery with Dr. Steinberg in 2000 after having a sever stroke in 1999. I have has 'morning glory' formation in my left retina causing me to be, for the most part, blind in that eye. This was congenital. I think I read that this eye problem/pattern is found in mm. I'm now wondering if I also had mm from before birth.

Interesting to think about.
There is so much to learn about mm.
Thank you all for sharing.

I wish you all the very best,

Linda (LA)

Linda (LA)

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