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
Moyamoya and daily headaches (Read 1579 times)
SusanL
New Poster
*
Offline


I Love MM.com!

Posts: 6
Moyamoya and daily headaches
May 7th, 2016 at 4:55pm
 
Hi,
I was recently diagnosed with Moyamoya after suffering from daily chronic migraines for the past 4 years. My first neurologist didn't take me seriously. I think he viewed me as a complainer and just handed me some preventative meds and sent me home month after month. After a long period of frustration I tried someone else. This neurologist tried a few things: nerve blocks,botox, etc. before giving up on me. She literally said there was nothing else she could do for me.

I then went on the Kaiser website and found a headache specialist. She is the one who finally ordered the right MRI that led to the MM diagnosis.

Since then I've seen a surgeon but he says I don't need surgery. He says my collateral arteries are providing enough blood to my brain.

I guess no surgery is good news, but my headaches continue. I can't work and at times my headaches become so intense I don't know what to do. Going to the ER is frustrating and doesn't help.

After reading many posts on this message board, I think I need to send my medical records to Dr. Steinberg at Stanford and maybe get a second opinion.

I would love hearing from anyone else out there with MM.

Susan
Back to top
« Last Edit: May 7th, 2016 at 4:56pm by SusanL »  
 
IP Logged
 
corynski
New Poster
*
Offline


I Love MM.com!

Posts: 31
lancing, tn
Gender: male
Re: Moyamoya and daily headaches
Reply #1 - Jun 6th, 2016 at 3:20pm
 
Hi SusanL
I'm Charley, father of Willy, 44, who is deaf and had MM surgery two years ago.  He's continued having the headaches post surgery and I'm always trying to learn how I might help him. 

The forum isn't very active but it's good to stay in touch I think, this is such a rare and unusual disease.  Each person's story is different, as are the symptoms of MM itself.  If I or Willy can be of assistance to you let us know.  He had his surgery with Dr. Mericle in Nashville, Tn, an excellent surgeon and a very good office staff and assistants.  I recommend them highly.

charley, 78, Lancing, Tn.
Back to top
  
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print



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


2003-2013 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