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Adult moyamoya post op problems (Read 4947 times)
Audreyc
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Adult moyamoya post op problems
Nov 28th, 2014 at 4:02am
 
My mom had her frist bypass surgery with dr steinberg 11/18. Things went great and she was out of the hospital in 3 days. We are from colorado, but my sister lives in SF. We stayed in San Fran and she felt great, she went in walks and even out with us to watch the Broncos game.

Her second surgery was 11/25. She was fine right after but progressively lost all speech and swallowing capabilities. Today she had a few good hours where we could understand her, and then it turned into nothing by these evening. She is getting overwhelmingly frustrated because she understands Everything just can't articulate any words.

She had an MRI that showed no current strokes. The team of doctors do not seem worried and said this sometimes happens. Has anyone else experience symtoms this severe? Did you make a full recovery?

She's 55, white, and very active. Watching her like this is killing me!
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SaraB
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Re: Adult moyamoya post op problems
Reply #1 - Nov 29th, 2014 at 12:30am
 
I know it's tough but try to trust the doctors and not stress about it too much. I'm 2 years post-op and still have frightening symptoms at times. It always end up being nothing and can usually be linked to stress or not enough sleep. I do call Stanford when I start stressing about a symptom just to verify that it's normal.
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Mr Fortunate
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Re: Adult moyamoya post op problems
Reply #2 - Dec 12th, 2014 at 8:44pm
 
Please share what those frightening symptoms are. I was supposed to have the surgeries this month, but have been so afraid of the post-op issues that I couldn't do it.

Also, any thoughts on how to get through the fear? I was hoping they would give me something to help me calm down. I think I have PTSD from worrying about this. I'm actually not concerned about the surgery itself, but the possibility of having new issues afterward has me in the fetal position night after night.
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corynski
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Re: Adult moyamoya post op problems
Reply #3 - Jan 11th, 2015 at 2:04pm
 
Greetings

I'm enquiring for my son William, 42, who is 12 months post 2nd operation, and is beginning to have more headaches, serious ones where he can't be in bright light. We'll be going back to Dr. Mericle in Nashville, Tn for William's 12 month post-Op, and hopefully learn more about his problems. He's also having tremendous stress with constant high blood pressure, not knowing what is happening.

Please see my other posts throughout the website, and I'll update this when I get back from Nashville.

Best wishes to Mr. Fortunate regarding his future decisions, and I do recommend Dr. Mericle in Nashville, he is an excellent doctor with a great team.

And to you Talisa, with your after effects. I'm pulling for you. This is such a maddening disease.

charles coryn, lancing, Tn.
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2x2709
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Re: Adult moyamoya post op problems
Reply #4 - Jan 12th, 2015 at 7:27am
 
Hello All, I have not been active on this board for a while.  My spouse received surgery at Standford approximately 2 years ago.  She recovered well but is starting to have extremely painful pressure headaches.  I think these pressure headaches may be related to stress raising and disciplining our kids. Does anyone else know if yelling or getting upset and stressed triggers more symptoms.  I am concerned that she may have had a mini stroke.  Any input would be greatly appreciated.
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Heath
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Re: Adult moyamoya post op problems
Reply #5 - Jan 12th, 2015 at 11:32am
 
with our son, getting upset most definitely impacts symptoms...as with anyone, stress and getting upset can alter blood pressure.  good luck
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'we are all born with a hint of madness--we mustn't lose it'--robin williams
 
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NYNY36
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Re: Adult moyamoya post op problems
Reply #6 - Feb 6th, 2016 at 6:13pm
 
Hi Audrey,
I see that you made this post a year ago, but I wanted to know how your mother did.  Did her symptoms clear up?  My husband is 37 and is having the same experience.  After his second surgery his lost his ability to speak and swallow.  He's also having memory long term memory problems, and difficulty understanding music. 
He actually had a really rough recovery for on the left side in the form of expressive aphasia, but he was his speech was like 95% recovered before he had the right sided surgery.  Please let me know how your Mom made out.  Its really breaking my heart to see him go through this.

Thanks,
Jacqui
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willowz
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Re: Adult moyamoya post op problems
Reply #7 - Mar 8th, 2016 at 5:54pm
 
My sister had her 1st surgery 4 months ago, so far so good. She's having the 2nd one this week. Her head does ache when she does too much, she calls it a signal that its time to stop and rest. And if she drives too far the vibrations affect her head. Otherwise she's been good. -Keep a good thought in your heart for her upcoming surgery!
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nicole409
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Re: Adult moyamoya post op problems
Reply #8 - Aug 19th, 2016 at 9:34am
 
Hi Audreyc,

I am greatful for your post.  I  thought I was imagining when I had trouble swallowing. 
You helped me. 
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