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i have many questions (Read 4761 times)

jcamp

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derry, USA, usa, 512, 70, NH, New_Hampshire
Gender: female

i have many questions
Jul 12^th, 2004 at 3:07pm

>My 10 year old son does not have a definate diagnosis of moyamoya
>but they are trying to decide if he has moyamoya or inernal carotid
>artery stenosis.He has had 2 mri/mra's and a arteriogram.both
>mri/mra's stated begining stages of moyamoya, the arteriogram was
>inconclusive.We have an apointment in a couple weeks to talk to the
>Dr.and hopefully I can get my questions answered then but if there
>is anyone out there who was diagnosed before a stroke I would
>greatly apreciate any info on what led to a definate diagnosis.Right
>now I feel like I am just waiting for something to happen to him and
>am feeling very helpless and am trying to educate myself about both
>moyamoya an internal carotid artery stenosis.I'd apreciate any info
>or experiance anyone has had thanks
>

joyce

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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: i have many questions
Reply #1 - Jul 12^th, 2004 at 4:55pm

jcamp -

I would definitely look at this link Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

to see which docs with MM experience are available to you to get a second opinion. Where do you live? Are you willing to/have the means to travel? Dr. Steinberg and Dr. Scott will answer e-mails pretty quickly - I don't really know about the others. I know what you mean by waiting for something to happen. Good luck! You definitley need a definite diagnosis!

-Shari

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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Mar

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Re: i have many questions
Reply #2 - Jul 12^th, 2004 at 8:23pm

Jcamp...

Welcome to our mm family. I’m sorry you had to find us, but you’ve come to the right place. We’ve all been through it and understand your questions and your fears. In my opinion, after seeing so many tragic results due to the many doctors that don't know enough about moyamoya the disease and seeing my niece suffer 4 strokes, all I can say to you is, if it were my son, I couldn’t get him out of there fast enough and directly to a moyamoya specialist. We’ve seen all too often the many doctors who wait or say they’re not sure. This is a progressive disease in most cases. I agree with Shari, you’ll know immediately with a mm specialist. No ifs, ands, or buts about it and know the best course of action. We just recently had a similar case here and she unfortunately suffered a severe stroke while doctors were deciding whether she had the disease or not, which in fact she does. I certainly don’t mean to frighten you. I just think it’s imperative that you seek a second opinion or even a third if need be. I noticed from your profile that you’re fairly close to the best pediatric mm specialist in the country. Shari mentioned the top two specialists in her post. Also, try and learn all you can about this disease, so you yourself can make informative decisions and you’ll know the lack of experience when you hear it and know the best course for your son. There’s a lot of info right here on the links, once you read it, you’ll know in your heart what to do. You're in my thoughts and prayers. If there's anything we can do to help, please don't hesitate to ask, we'll all be here for you.

God bless,
Mar

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LisaH

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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female

Re: i have many questions
Reply #3 - Jul 12^th, 2004 at 10:33pm

Hello and welcome JCamp!

I did not have a stroke before diagnosis. The MRI/MRA brought about the first suspicion of MoyaMoya but it is the angiogram that provides the definite diagnosis for everyone. I don't understand what your son's doctors/radiologists mean when they say that the results of the angio are inconclusive. It has been my understanding that it's either there (the puff of smoke) or it isn't. Maybe you will get more answers at the appointment with the doctor, but I personally wouldn't want to wait 2 weeks to talk to him. Perhaps he can explain the "inconclusive" with you over the phone? Find out how much experience this doctor has with MoyaMoya- if it is indeed MoyaMoya. This is very important! It may be because of the doctors and radiologists lack of experience with MM that is leading to the inconclusive results. If you find that the doctor you are currently dealing with has very little or no experience with MoyaMoya, please do seriously think about contacting a different doctor, one that preferably has seen 100+ MM cases, even if that means going out of state.

In the meantime, empower yourself by reading every possible thing on this board- the links and others' stories. Unfortunately, with this disease, we really have to be on top of all the available information and not blindly follow the advice of doctors as a lot of them are just as clueless as we are.

So, be proactive but don't worry too much! You have reached a great support network here and chances are you will find very similar circumstances here on this board. We're here for you! Smiley

Keep us updated! Wink

Lisa

"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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jcamp

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derry, USA, usa, 512, 70, NH, New_Hampshire
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Re: i have many questions
Reply #4 - Jul 13^th, 2004 at 1:25am

thanks for your replies.

And I apreciate the advice . It was Dr.Scott that we saw.It started in Febuary when my son passed out ,there was tremors like a seizure on the right side .I imediatly took him to the emergency roomwhere they did a Ct scan (which was negative ) and multiple other tests all negative .I followed up with the pediatrican who booked a EEg and cardiac tests,we waited about 3 weeks for these tests,cardiac was negative EEG SHOWED SPIKES ON THE LEFT SIDE . WE WERE REFERED TO A NEUROLOGIST AND the first MRI WAS DONE,which showed oclusion of the left internal carotid ,the Mra was done and we were in boston at childrens for the arteriogram within a week.We met Dr.scott there and he put him on baby asprin,and told us to follow up with the neurologist and repeat the mri/mra in 3 months .We just had the repeat mri/mra done which still stated begining changes of moyamoya.After speaking with the other neurologist and not feeling I was getting the answers I booked an apointment with Dr.Scott on the 21ST of this month .I guess I am just getting impatient,I felt I was gong to have my answers right after the repeat mra.Thanks again joyce

joyce

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LisaH

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Be thankful in all circumstances

Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
Gender: female

Re: i have many questions
Reply #5 - Jul 13^th, 2004 at 1:43am

Joyce,

I completely understand your frustration with all the testing/waiting for answers/come back in 3 months business! Hurry up and wait I call it! Undecided

Anyway, I just read your latest post and am wondering if Dr. Scott saw the angio. Was it he or the other neurologist that has said that the angio was inconclusive? Also, did the latest MRI/MRA report show that there were any changes from the first one?

Well, the 21st isn't too far off- although I'm sure it feels like forever right now. I hope you get some answers at that time. I'm anxious for you! How has your son been doing since February? Any more seizures or any other problems?

Hang in there!
Lisa

"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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jcamp

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derry, USA, usa, 512, 70, NH, New_Hampshire
Gender: female

Re: i have many questions
Reply #6 - Jul 13^th, 2004 at 9:43am

My son is doing well he has ocasional headaches,which I of coarse worry about .but has had no other seizures or symtoms.He feels fine and has a hard time understanding why he has to keep going for tests and to the doctors. Dr. Scott did see the arteriogram. The exact wording said "could be related to asymmetric moyamoya phenomenon'the appearance is non specific and could be seen in the setting of internal carotid artery dissection" The follow up mri showed " minimal changes". Smiley

I guess I'm just going to have to learn to have some patience. I already have 2 pages of questions and will probably have more by the time the 21st gets here. Ill keep trying to learn more . But I have to say this is the most informative site I've found and I really apreciate the info Thanks Joyce

joyce

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Annica

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My daughter lives with
mm

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Stockholm, Sweden, europe, 317, 154
Gender: female

Re: i have many questions
Reply #7 - Jul 14^th, 2004 at 4:00pm

jcamp,

Like everyone else I welcome you to this forum and I´m sorry you had to find us at all.
I have a 8 year-old daughter, Louise, who has MM. She was diagnosed in Oct -02 after a few months of numbness and TIAs. She also had two small strokes that were completely silent, meaning we never noticed them and she never had any sideeffects or symtoms from them. She had the surgery two months after the diagnose but only three weeks after her angiogram that settled the disease to 100%. Not too long waiting I know but those weeks back in 2002 were the hardest and most frustrating I have ever lived through.
You´re very true about needing patience in this matter and at the same time you have to push the tests and doctors to move faster, because time is an enemy here.

However, if you have contact with Dr. Scott I believe you´re lucky, according to everything I have heard and read during the last almost two years he is THE MM-expert in children in the whole world.
We live in Sweden so all we could do were settle for a very scilled and experienced neurosurgeon but he never before dealt with this disease. He was in contact with Dr. Scott overseas on mail and I think on the phone and Dr. Scott actually did the evaluation of all the tests and x-rays done on Louise and actually told her surgeon how to perform the surgery, method and so on.
He also answered all of my worried e-mails I kept sending him and for that I am very thankful. In this country I think there are about 10 (!) known cases of MM in children ever so info was rare and this site wasn´t "born" yet.
To make a long story a little shorter Louise is doing great today and is living a perfectly normal life (apart from the daily shots of bloodthinner that she gives herself and they too are normal to her by now) and I´m sure that your son is going to be just as fine after all this. He is in the best hands with Dr Scott OR the doctor that he recommends and we are all thinking and praying for you!!
Keep us posted and take care!

Annica

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