Welcome, Guest. Please Login or Register
Moyamoya.com
 
NEW search box below... Search Moyamoya.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday ListDonate  
 





Page Index Toggle Pages: 1
Send Topic Print
Frustrated with our Neuro (Read 2405 times)
kalise
New Poster
*
Offline


my son lives with moyamoya.

Posts: 36
westernaustralia, Australia, australia, 21, 203, WA, Western_Australia
Gender: female
Frustrated with our Neuro
Apr 15th, 2005 at 9:57pm
 
Hi everyone, has been a while since ive been online, so have been reading all the posts and catching up on everyone's news.  I read the article in the New York times, and printed it so i can show my family.  I was taken aback when i read about temporary speech impediments and loss of memory.
About 6-8 weeks ago, Mitchell fell off of my bed, and split the back of his head open on a shelf.  I took him to the hospital, had him stitched up and he was allowed to come home with me that same night.  About a week or two later, Mitchell out of the blue, started stuttering really badly, frequently.  His special needs aid at school was as concerned as me, and also told me, that Mitchell was getting really frustrated and upset at school, because he would try to tell her or ask her something, and half way through would completely forget what he was going to say.
I spoke to Mitchells neuro, he told me it would have nothing to do with the bump on the head or the moyamoya, that its a coincidence, and i need to not be so paranoid. I KNEW I WASNT BEING PARANOID....and the article in the ny times proves it, i cant wait to show our neuro the article, and demand answers.  It is so frustrating being over here, when all the experts on this disease are so obviously over there.
Anyway, thanx for letting me vent on here, i hope you are all doing well.
God bless and take care
Kalise.
Back to top
  
 
IP Logged
 
babyblue
Senior Poster
****
Offline


Diagnosed 2003

Posts: 306
kennesaw, USA, usa, 417, 219, GA, Georgia
Gender: female
Re: Frustrated with our Neuro
Reply #1 - Apr 16th, 2005 at 9:28am
 
Kalise-

Sorry to hear your troubles. I know how much doctors can be frustrating. If you are really upset with this neuro. i would look into finding a new one that will help you with problems. I hope you are able to find answers and sorry for Mitchell's troubles. Take care and keep us updated on how Mitchell is doing. Take care and i will keep you and Mitcell in my thoughts!

Christy
Back to top
  

"Life is not a desination, but a journey!"
 
IP Logged
 
kotipup
Experienced Poster
***
Offline


My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female
Re: Frustrated with our Neuro
Reply #2 - Apr 16th, 2005 at 8:33pm
 
Kalise,

I can completely sympathize with your frustration.  Our daughter had seizures starting at three months old (she's now 18 months old and still takes seizure meds).  Study after study, and all our neuro could suggest was a mitochondrial disorder or degenerative neurological disease.   It took two strokes, and a different hospital, for Daphne to finally get her diagnosis.

Then, we were told that the moyamoya had nothing to do with her seizures... that Daphne has some genetic disorder that caused the moyamoya and the seizures, but they were two different things.   I knew it didn't sound right, and all the research I did online showed that moyamoya could cause seizures.

In Stanford we learned that the majority of children under five who have moyamoya present with seizures.   
Dealing with experienced people makes a world of difference!!!

Sorry to make you probably repeat what you've posted in the past, but I was wondering if Mitchell has had the bypass surgery.   Daphne had bilatteral indirect bypass procedures at Stanford this March, and we already feel like we are noticing some subtle improvements (especially in speech.  Daphne's not saying any words, yet, but she is babbling lots and making new sounds... she's also more interactive with us).

Jenny
Back to top
  
WWW  
IP Logged
 
moyamoi
Ex Member


Re: Frustrated with our Neuro
Reply #3 - Jun 8th, 2005 at 10:10am
 
Hi Kalise,
I have MM (was diagnosed in 2001) and have an absolutely wonderful neurosurgeon in Perth Western Australia (I think that's where you are too) His name is Emil Popovic and he has his rooms at 140 Mounts Bay Road, Perth - he operates out of the Mount Hospital for private patients and also has connections with Royal Perth Hospital and Sir Charles Gardiner Hospital. He is very cluey on MM (Has done 2 STA-MCA bypasses on me) and he may be able to help you
Moira
Back to top
« Last Edit: Jun 8th, 2005 at 10:18am by N/A »  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print



Moyamoya.com Forum » Powered by YaBB 2.4!
YaBB © 2000-2009. All Rights Reserved.


©2003-2018 Web Vision Enterprises LLC All Rights Reserved. All information on this site is protected by international copyright laws. You may not re-distribute any information from this site without written permission from Web Vision Enterprises LLC and the webmaster of this site. Violators will be prosecuted.

You may view our privacy policy and financial disclosure statement here





Valid RSS Valid XHTML Valid CSS Powered by Perl Source Forge