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Message started by bnl1901 on Mar 3rd, 2013 at 10:50am

Title: My Moyamoya story and questions
Post by bnl1901 on Mar 3rd, 2013 at 10:50am
Feb 4th, 2013 started like any other, but ended in a stroke. I had worked my typical 11hour day, then worked on the house after that. Around 10pm I was (still) talking, recounting the day's events, when I became too tired to finish my story. I didn't think much about it, figured I just needed to sleep, but my DBF (dear boyfriend) knew better - he insisted something was wrong and demanded I go to the hospital. By the time we arrived at the ER, I couldn't speak at all.  After all the tests, I was told I had a complete occlusion in the part of my brain that controlled speech - I had a stroke.

The next few days were spent in the hospital trying to keep my blood pressure up and decrease the frequency of subsequent TIAs. Ironically, the national stroke conference was being held and most of the country's specialists were in Hawaii. My neurologist sent my images across the ocean and I was given a diagnosis of Moyamoya.

I was transferred to another hospital and the next day I had a left STA-MCA bypass. I've had no additional strokes or TIAs and my speech is back to normal. I'm very, very grateful to everyone involved in my care - I KNOW they saved my life.


But now I have some questions:

I have a constant headache. It's not terrible most days, but it gets really bad at times. My head feels very "full", almost like I'm congested above my eyes. And my eyes are VERY sensitive to light. Is this common? Will these go away eventually?

Plus, I have this pain behind my left ear and down the side of my neck that seems to be getting worse. The pain is always the worst at night, bringing me to tears at times. What is this and will it improve?

I can't yawn - the jaw pain on my left prevents me from opening my mouth all the way. It almost feels like its being stopped by something (? a plate).  Has anyone else experienced this?

It's been three weeks and my incision isn't healed yet. It's still scabby in the middle and at the top - and sore, especially in the cold air. Is this expected 3 weeks post-op?

Sorry for so many questions - I am tankful to ave found moyamoya.com.   

Title: Re: My Moyamoya story and questions
Post by pritzlm on Mar 3rd, 2013 at 6:20pm
Our 7 yr old had surgery on both sides.  I will share what we went through and what we were told.  As far as the incision and healing...our son's took many weeks.  As long as it was closed and not weeping or oozing our doctor said it would continue to heal.  They have both completely healed now.  As far as headaches and light sensitivity...I think that's common.  Our doctor told us to please give him a year to completely heal.  You had a major trauma to your brain...the stroke and the surgery.  The headaches should lessen over time. As should the light sensitivity.  I'm not sure about the pain in your neck or jaw.  It could be trauma to the nerves or muscles from the surgery.  You should ask your doctor for some kind of pain relief to help lessen the symptoms.  Hope that helps.  We are grateful too, to have found this forum.  Good Luck! :D

Title: Re: My Moyamoya story and questions
Post by maryanne on Mar 4th, 2013 at 2:24am
I also had the bypass surgery it is normal to be experiencing jaw pain and hard to yawn eat etc. It takes a while before it gets back to normal.
Im sure over time the pain in your head and fullness will disappear you have been through major brain surgery be patient it all takes time. Best wishes for a speedy recovery
:)

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