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moyamoya and not aging mentaly (Read 6667 times)
Lilian
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moyamoya and not aging mentaly
Jan 28th, 2008 at 4:55pm
 
this might be a bitt of and odd question.
I was diagnosed with moyamoya when I was 17, but I had a stroke when I was 15.
Right now I am 23, but I feel like I am still just 15 years old.
In everything I do.
I cry when things aren't going the way I want.
I cry when I fail
I cry when something unexpected happens
I cry when people yell at me.

I cannot cope with certain situations.
I cannot handle the things I should be able to handle and I don't feel like an adult at all.

Could this be related to moyamoya?
Since I feel like a 15 year old and I had my stroke at that time as well.

Please help me,
I'm kind of desperate
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shgr
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raleigh, USA, usa, 469, 184, NC, North_Carolina
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Re: moyamoya and not aging mentaly
Reply #1 - Jan 28th, 2008 at 7:48pm
 
My guess is you have PTSD (post-traumatic stress disorder) .  Having a serious, potentially fatal disease can be traumatizing to some people, my self included.  Traumatic experiences can indeed halt maturity and/or the development of emotional tools. I would look into PTSD on the web or even make n appointment with a therapist.  Good luck and many to you!
Stephanie
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Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie
 
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Lilian
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Re: moyamoya and not aging mentaly
Reply #2 - Jan 29th, 2008 at 10:46am
 
thank you so much!
I am going to see my doctor tomorrow and I will ask him about this.
I read some information about it and it seems logical to me that I have this.
I will keep you updated
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gotchlorine
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Our daughter, Tara, lives
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Re: moyamoya and not aging mentaly
Reply #3 - Jan 29th, 2008 at 11:16am
 
Lilian,

I have felt all along that there isn't enough credit given to the emotional toll this disease takes on people.  My daughter was also 17 when she was diagnosed and had her surgeries.  We were well aware that she felt like the rug had been completely pulled out from under her.  At an age when most people are striving to gain a sense of independence, she instantly felt like she had no control over anything.  As a result, we watched her carefully for signs of depression and/or anger.  It was hard and, to this day, something we try to remain cognizant of.

I think it's really good that you know yourself well enough to recognize the difficulties, and completely agree with Stephanie that you should speak with a professional about this.  Guidance and advice from someone unbiased about your particular situation may be very helpful to you.   

Please keep us posted.  My thoughts and prayers will be with you.

Smiley Jill
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shgr
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Re: moyamoya and not aging mentaly
Reply #4 - Jan 29th, 2008 at 9:04pm
 
Lillian,
I am so proud of you for speaking with your doctor.  I second everything Jill wrote and please know you are in my thoughts.
Stephanie
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Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie
 
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gazou
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9 year old boy with moyamoya!

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Re: moyamoya and not aging mentaly
Reply #5 - Feb 1st, 2008 at 9:25pm
 
Dear Lilian,
My son had his first stroke in october of 2006 when he was only 6 1/2. He started acting like a much younger child and had a hard time dealing with any stressful situations just like you mentioned. Part of it is probably due to the stroke but also from the trauma he experienced. The doctors took care of all his medical needs but I knew that something needed to be done for his emotional wellbeing. He started art therapy at our local family center a few months after his surgeries and he seems to be doing much better now. He just turned 8 yesterday.
You might benefit from getting some kind of counselling to help you deal with your emotions and try to make sense of what happened to you. What you have gone through is very traumatizing especially at such a young age , your body and mind need time to heal and there is lots of help available out there. You might want to check at your local family center or Brain injury association, or ask your doctor where you can get that kind of help.
We wish you the best. Just know that you are a survivor and that it is important to reach out for help.
Kindly,
Gazou
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LA
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ian~Re: moyamoya and not aging mentaly
Reply #6 - Feb 1st, 2008 at 10:18pm
 
Lil
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Linda (LA)
 
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LA
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Re: moyamoya and not aging mentaly
Reply #7 - Feb 1st, 2008 at 10:30pm
 
Lilian~

My heart goes out to you.

Life post stroke is not a picnic.....It's tough.

Am glad you're seeking help.

The emotional changes, and mental changes, are really a valid topic. My gosh, I had to re-learn to walk, talk, think and laugh after my first stroke at age 49. Was wierd thinking I was well again once I'd gotten 'better.'  But things in my brain were different. It's taking years to understand that I don't speak quite,  loose words, don't think well, act quite like I use  to (you know, wonderful  person, etc).

Glad your getting help.
Thank you for posting this topic because  mm strokes are really tough. I've come along way and I feel you will too--- just because you asked and are open to change.

Be well,

LA (Linda)
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Linda (LA)
 
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LA
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Kneeland, USA, 15, 113, C
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Re: moyamoya and not aging mentaly
Reply #8 - Feb 2nd, 2008 at 12:53pm
 
Lilian~

I was thinking more about you're situation and how I live with mine.

I attend a Tramatic Brain Injury school here in Eureka, Ca.

It's mostly for people who've had external trauma to the brain -- but I find that my abilities and adjustment to life post stroke are similar to my classmates. 

We struggle with anxiety, depression, inability to cope, being overwhelmed....many of the things you mentioned. The biggest attraction for me is having people around me who understan what it's like when I say 'I can't bear to shop in that crowded store' or 'this is too much for me -- I'm overwhelmed' or 'I'm furious'.....or 'today I accomplished something'.


I sense that your stroke could be why you're feeling as you do. Ask your doc about  brain damage due to the stroke. and if theres support. As time goes on post stroke I do get more able.

I wish you the best,

Linda
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Linda (LA)
 
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Lilian
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Re: moyamoya and not aging mentaly
Reply #9 - Feb 2nd, 2008 at 2:26pm
 
I really hope I will see him this week.
If not I will ask for an appointment
I hope I will be able to get help,
I'm having some trouble with my insurance.
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Lilian
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Re: moyamoya and not aging mentaly
Reply #10 - Feb 2nd, 2008 at 3:46pm
 
I just figured out that there is a doctor in Holland who performs the surgery.
Should I contact him/her and ask the same thing I asked here.
It's always better to ask a person who know about moyamoya right?
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« Last Edit: Feb 2nd, 2008 at 4:06pm by Lilian »  
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shgr
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Re: moyamoya and not aging mentaly
Reply #11 - Feb 2nd, 2008 at 9:58pm
 
Lillian,
I do not think it would hurt to ask that doctor you mentioned.  However, I do not know if he/she will be able to give you any definitive reason for your feelings, but he/she may have some suggestions for the avenues you need to take to figure out what is going on with you.  As for the insurance issue, I think this problem arises quite frequently with mental health.  I am handling this by first going to a therapist that is a social worker...she is wonderful...I have been going to her for four years now and she helps more than I could ever tell you.  She also lets me pay on a sliding scale, I pay little over half her normal fee b/c my insurance does not cover the visits.  If you are unable to locate a therapist who can help you, I bet you could always try to find support groups for stroke victims,  traumatic brain injuries victims, or serious illness victims.  I would also recommend having some mental testing.  You may have had this before/after your surgery.  I had the testing both before and after my surgery at Stanford.  This testing could help unearth any changes in your mental capabilities due to the surgeries.  It might also expose any areas of your mental abilities in which you are struggling.  For example, some testing I had about ten years ago showed that I operate at the 3TH GRADE level in pronouncing and deciphering consonant and vowel blends.  They think this is b/c I had such debilitating ear infections in my childhood that I could not hear well enough to hear and absorb these blends. You may have challenges b/c, as Jill said, you got sick during an important developmental time in your life.  I bet the tests could also unearth any challenges to due to physiological changes from your illness/stroke.    Probably too much information, but I want to help you....I have had a very hard time growing up too.  I am just starting and I am 31!  Always remember that you are doing the best you can do at this moment in your life, do not be too hard on yourself.
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Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. Dale Carnegie
 
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Lilian
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Re: moyamoya and not aging mentaly
Reply #12 - Feb 3rd, 2008 at 5:40am
 
I will reply later on.
I need to think about it for a while
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moody
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Re: moyamoya and not aging mentaly
Reply #13 - Feb 4th, 2008 at 12:37pm
 
Hi Lillian
I'm 38 yrs old and still have the same problem like you have, major depression take a big toll in my life also, my 2nd surgery was Nov 2006, I still seeing neuropsychologist twice a month. 
Neurosurgeon will have no answer for you about this emotional stuff, I went to my neurologist and he will give suggestion that where to go or who to see, take care of yourself .

Smiley Kieu
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Yesterday is past, tomorrow is future, today is the gift, that why we call it present.
 
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ladybugz
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Re: moyamoya and not aging mentaly
Reply #14 - Feb 20th, 2008 at 11:42pm
 
I'm replying to the beginning of the thread. I haven't been on in awhile.  But, I am glad you are doing something about it.  I feel since I turned 18 almost 4 years ago I have not progressed, either. In fact I feel like I am more immature, like I cannot deal with the world. Thanks for bringing this up. I don't know what I am doing with my life anymore and I am going to be soon leaving college. I used to have everything perfectly planned out, but I feel like this took such a toll on my life. I never realized how much it really took on me during college. It affected my grades, too. Sad
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