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windyf New Poster Offline Life is a gift everyday like it your last Posts: 9	fear of the unknown Nov 24^th, 2008 at 12:03pm I am currently having PT and I feel like its all in vain . I have been leary since I was first diagnosed with MM . Do you ever get over the fear ?
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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: fear of the unknown
Reply #1 - Nov 24^th, 2008 at 1:00pm

You are not alone!! I mostly got over it about a year after my surgey. It still pops up and scares me every once and a while. I had the hickups when i stroked and so every time I get the hickups realy bad I get scared. Then about two weeks ago i started to get realy bad headachs so i made an apointment with my nurologist and He diagnosed me with too much stress. I am in school and it is a hard class, I just moved into a house, my mom had surgery( apendix), and i got premoted all in a mounth!! Just remember you have your family and friends. Also everyone here!!
I hope things get better for you. You will be in my prayers.
Becky

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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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windyf

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Life is a gift everyday
like it your last

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Re: fear of the unknown
Reply #2 - Nov 25^th, 2008 at 12:37pm

thank you becky, i am at the point where I have fears of everything.My toes go numb everday and just as I am about to call my family dr I realize it has faded. I am so scared because I have only had bypass on one side of the brain and I hear the posters saying they have had two so I anticipate the tell tale sign of moyamoya yet again Embarrassed

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Windy

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: fear of the unknown
Reply #3 - Nov 25^th, 2008 at 12:55pm

I have only one side done. My other side looks fine. I would caoution about headackes getting progresivly worse. when i was sleeping I awoke with one arm numb and my nurologiset said I may have pinched a nerve, but he checked me out and said i was fine. If your toe does that alot I would call your nurologest and ask him/her to take a look at you for your peice of mind. If your nurologist feels that you need a mri/mra to be sure then you will get your answer. Do you have a nurologist? If not, I recomend finding one that knows what MM is. I have called my nurologist with some of the silliest ackes and pains and he has always put my mind at ease. If I seemed to scared he would schedual a mra to see how my blood flow is.
I hope this helps put some of the fears away.
Becky

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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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windyf New Poster Offline Life is a gift everyday like it your last Posts: 9	Re: fear of the unknown Reply #4 - Nov 25^th, 2008 at 3:37pm actually becky I am afaird that he will confirm my fears. I live everyday in doubt I am a mother of 2 what if I cant wake up 1 morning what will they think'
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KTiller

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Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: fear of the unknown
Reply #5 - Nov 25^th, 2008 at 8:11pm

Hi,
It's been just over a year for me and yeah, I'm afraid too sometimes. I think we all have some degree of fear even if we have had the surgery on both side already. What if the grafts close? What if I'm not getting enough blood through? Is that wooshing sound good or bad? My chin feels kind of funny am I having a TIA? I see a brightness after I close my eyes at night, now what? What if....? My imagination can think of a million worries. I wasn't much of a worrier before moyamoya.

Just the other day my psychologist told me that worry is completely nonproductive and a total waste of time and energy. If you have a concern, he said, do something about it. I told him I don't want to raise false alarms or be thought to be a hypochondriac. I also wonder if there is danger in having too many MRI/MRAs. He tasked me with finding an answer to the MRI/MRA question and then told me if there is no danger, then by all means get one done. Much better to know for sure that something is wrong and get it fixed and if not, then to know that all is well and so stop the needless worrying - takes a lot of energy to worry and doesn't make for happy times.

I'll let you know when I get an answer to the MRI/MRA question. I want to learn to live a happy and productive life despite moyamoya disease. He's promised to help me learn to do that. I'll share an pearls of wisdom that he tosses my way.
Kim Wink

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windyf

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Life is a gift everyday
like it your last

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Re: fear of the unknown
Reply #6 - Nov 26^th, 2008 at 10:09am

Thank you for sharing your info I am 6-7 mths out and not a day goes by that I refuse to believe that I should not be in the hospital Cheesy

So they fixed my brian but left just enough room for worry. I know I should be thankful .... I just dont have that assurance anymore.

After the last stroke I spent 1 mth in a rehab instatution and this was post surgery Cry

I curretly am on disability due to moyamoya. I wish their were just one day I could go without worry Undecided

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Windy

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: fear of the unknown
Reply #7 - Nov 26^th, 2008 at 1:08pm

I would talk to your nurologest. If he does conferm it the you can get treatment now. Or you could wait around and see if you have another stroke. Don't fear the nurologest , he/she is there for you!!

Maybe you should also see a nurophycologest (a phycologest that specializes in nurological feelings and issues). Also talk to your kids on what to do if mommy falls down or doesn't wake up. Do you have family near by that could stop by or call everyday?

I know this is the most difficult time but it does get better. Please got to your nurologest!!!!!!!! for your kids sake and get the worries answered!! if you don't you will be no help to your kids!!! I don't mean to be harsh, but you need to do this!

All I can do is pray you find the answers you seek and find the confidence in yourself to do the right thing. I will also pray that you will see your nurologest before your kids find you in a state that you fear the most.
Becky

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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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LA

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Moyamoya survivor since
1999!

Posts: 334
Kneeland, USA, 15, 113, C
Gender: female

Re: fear of the unknown
Reply #8 - Nov 26^th, 2008 at 9:12pm

Wendy~

My heart goes out to you.
The suggestions everyone has given are wonderful. Especially about being truthful and loving with your children.

I had surgery in 2000 after having a severe stroke in 1999. After the stroke (Had two actually and both of 'em were intense) I felt like I was going to fall over and die any minute with another stroke. I'd be at the grocery store and think I was going to die in the frozen food section!

I was afraid.

A wise counselor who helped me with my fear suggested that I keep saying 'I'm alive and functioning NOW -- Now I'm functioning and I'm healthy' etc... so when I'd get afraid I'd just say, Right NOW I'm OK....

It worked. So did time. Let the time to be secure happen.
You sound like a strong and loving woman.

Lots of love,

Linda (LA)

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Linda (LA)

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windyf New Poster Offline Life is a gift everyday like it your last Posts: 9	Re: fear of the unknown Reply #9 - Nov 27^th, 2008 at 10:45am You all are so caring I wish I had found this site earlier. Ithank you for all the suggestions, I had felt ao alone,and I am calling my dr as soon as they open
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charl Junior Poster Offline Mother of a 18 year old with MoyaMoya! Posts: 58 potsdam, USA, usa, 473, 66, NY, New_York Gender:	Re: fear of the unknown Reply #10 - Nov 29^th, 2008 at 7:35am You might also think of getting a counselor. my daughter is like you and she has anxiety, panic and post traumatic stress, there are medications that can help aleviate some of these symptoms. Prayers and best wishes, Amiee & Molly
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windyf

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Life is a gift everyday
like it your last

Posts: 9

Re: fear of the unknown
Reply #11 - Nov 29^th, 2008 at 1:02pm

charl wrote on Nov 29^th, 2008 at 7:35am:

You might also think of getting a counselor. my daughter is like you and she has anxiety, panic and post traumatic stress, there are medications that can help aleviate some of these symptoms. Prayers and best wishes, Amiee & Molly

I have all the meds that are supposed to make each of these issues eaiser to deal with ,but you sre correct in saying I need some talk thearpy.

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Windy

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: fear of the unknown
Reply #12 - Dec 1^st, 2008 at 6:23pm

Talk theropy is good to let it all out. I would also stress seeing a nurophycologest. They specialize in people with nurological disorders. If lets say you had a stroke and are having touble dealing with not being able to move like you remember you did. There are specalized group theropy or one one one that the nurophycologest can set up for you. Aslo since the nurophycologest will more then likeliy if they have not hurd of MM look it up so they may bealbe to give you better medications since they understand nurological things better. I saw one of both for a breef time and droped the regular phyologest since it was not helping me. Good luck. I will keep you and your family in my prayers.
Becky

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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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windyf New Poster Offline Life is a gift everyday like it your last Posts: 9	Re: fear of the unknown Reply #13 - Dec 12^th, 2008 at 12:31am thank yall so much for caring about me
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