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Moyamoya and daily headaches (Read 3920 times)
SusanL
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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
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« Last Edit: May 7th, 2016 at 4:56pm by SusanL »  
 
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corynski
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lancing, tn
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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.
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