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Symptoms in adult MM survivors (Read 6065 times)
SteveH
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Symptoms in adult MM survivors
Jan 18th, 2011 at 6:58am
 
Greetings. My wife was diagnosed with MM when she was 7 and underwent bypass procedure at age 8. My question surrounds any possibility of lingering symptoms into adulthood. We saw a neurosurgeon 8 years ago who, after a 2 minute "exam" which involved little more than ensuring she could touch both hands to her nose with her eyes closed, declared her free of symptoms. My wife has somewhat limited use of her right hand/arm, permanent loss of feeling in the fingers of the right hand and suffers emotional symptoms that border on bipolar - with long bouts of depression and thoughts of wishing to die. These often come coupled with severe headaches. Are there any adult survivors of MM and bypass out there (or relatives) that can speak to similar experiences?
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mg12061
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Albany, USA, usa, 492, 84, NY, New_York
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Re: Symptoms in adult MM survivors
Reply #1 - Jan 18th, 2011 at 8:26am
 
First welcome to the MM family. I'm so sorry your wife is having such a difficult time. I don't have any experience with adult MM. My daughter has MM.(diagnosed and surgery at 5 she's now 13) She still has some lingering affects form the strokes. No use of her left hand and arm, and she needs braces on her legs to walk. Extreme temperatures are hard for her. She also gets exhausted very easily. She seems to need 10-12 hours of sleep to have a good day. This is a very helpful and caring group of people here and if someone has had this kind of experience I'm sure they will post. Has she had any follow up MRI's as an adult? Maybe a new neurologist with more MM experience could help.
Mary Grace
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STrantas
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Re: Symptoms in adult MM survivors
Reply #2 - Jan 18th, 2011 at 9:07am
 
Hi Steve - Sorry to hear about your wife's troubles - but so glad you found us.  I had the indirect bypass 7 years ago.  While I don't have any lingering physical effects, I do believe I have other "symptoms" that have resulted from my strokes.  I tired pretty easily - and I still stumble over words sometimes. 

If you want her to contine seeing a neurologist I would seek out someone with more experience with MM.  I no longer see a neuro and was told I don't need to unless I become symptomatic (TIA's, etc.).   

-Shari
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pamR
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Re: Symptoms in adult MM survivors
Reply #3 - Jan 18th, 2011 at 10:34pm
 
Hi Steve. My daughter is only 14, but she still has headaches, often feels sad and depressed, and like Shari, sometimes stumbles over her words. Its seems there are many lingering symptoms of this disease. I was wondering if your wife takes a baby aspirin daily? Also, does she manage to stay well hydrated? They are the two things we were told our daughter absolutely had to do. Hope this helps.
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Becky
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Re: Symptoms in adult MM survivors
Reply #4 - Jan 20th, 2011 at 12:43pm
 
Steve,
Welcome to the Family. I am sorry to hear your wife is struggeling with the change. I was diagnosed after a stroke at 22 my surgery was my 23rd birthday present, and now I am turning 30 soon.

I was strugeling with depression and "evil" taughts before my surgery, and slightly after it. But this sight let me know I am not alone and there is always someone I could talk to.

I uesd to have issues using my stroke side of my body but the isses have decreased over the years to the poing where it is only when I get overly exausted I can't use them well. My daily headaces have decreased over the years as well to about once a month.

Secrete to my sucess: Love, snuggels/hugs, and getting to know the new limits my body can do. The support of my family and friends treating me like I was normal (with the watchful eye for any issues) helped keep the evil thaughts at bay. Also every time I had a "woe is me", why and I not normal", I just want to crawle in an hole and die" my husband would tell me to stop it. 1) your alive so God(which ever you believe in or a hight power) wants you to live. 2) You are loved! 3) There is always something to do even if you can't do what you used to the memorys are still there to be cherrished. 4) Your alive.

I work 40 hours a week as an engineering aid. I go to school part time working on my BS in Electrical engineering. I have been married for going on 8 years. I may not be able to sky dive or be in a moshpit at my favorite band's concert but I am alive.

Since she is still having issues, you may want to see if she needs another surgery or mediation. No one shoud suffer.

I hope this helped, Stay strong, Stay positive,
Becky
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« Last Edit: Jan 20th, 2011 at 12:45pm by Becky »  

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar.     STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic
 
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