I only had my by-pass in June this year, I was okay with everything at first, I guess i never really thought about it all, the whole moyamoya disease, then i started to be afraid and worry all the time, I felt better for awhile, next thing i know i am in the er with a aneurysm that ruptured, crying from pain and being so afraid i was going to die, well i am alive today with mostly no problem from it, i even had to wait 2 and a half days ( with no pain meds for the stupid pain) to get into surgery because my surgeon had the flu, I have times where i am okay and not afraid but then i have days where i am so afraid i don't even want to leave home, I know how you feel, the feelings for me, always come and go, one day i pray i wont be afraid anymore. When your having your bad moments, try talking to someone, someone who can relate, or if you are a believer talk to god, i know talking to god helps me so much and talking to people who understand me, helps. too we are all here for you, and everyone else, who needs to talk vent whatever it may be, take care

Reagan, My daughter had her surgeries 6 years ago.There are still so many emotions that I deal with.....BUT they do dwindle a bit over the years. I get very emotional on "aniversaries" The day she was diagnosed,her first stroke,second storke,surgeries, etc. We still felt like we lived with a ticking bomb for years, but it's now been 6 yrs and I don't think about it as often and feel more confident that she will stay stroke free. You certainly will not forget all that you have been through but over time you can feel more confident that your life can be "normal" and you may not think about the moyamoya as often.A year is not very long.I think the strongest feelings I get are when I look at old pictures of Kathleen or videos before her strokes, or allow myself to think about how different her life would have been without this disease,but then I  see her smile and I know it's all OK.I also know that it could ahve been much worse and I feel blessed. I don't know if this helps with your fears but please know that your not alone and we're here to listen and lend support.
Mary Grace

Reagan~

Time will add new experiences and things to think about.

BUT, its been 9 years since my surgery (plus two major strokes) and I'm ok. MM is still very much a part of my life.  as someone else mentioned, I too am happy to be able to share and be of use with mm. It has a new perspective now. If you can get to one of the mm reunions that might be helpful. This board is great for help!

It took me ages to gradually get to where I was at least semi secure about my life.
Spent a lot of time saying "Right Now I'm ok" over and over again.
I definitely related to your question.

Give yourself time and hugs,


Linda (LA)

It is like a holiday/annivearsary. I have the day I had my stroke and my surgery days on my calander just like my marrage anivarsay. This way i don't forget that I am still here. It is a reminder that God didn't want me gone from this world yet, and each year that passes should be a blessing, and should be celibrated!
Becky

I will make every effort to attend the reunion this year. I couldn't with the last one because it was so close to my 6 month follow up and the cash flow was a little on the low side. This year I will tuck some money aside. Thank you.

Reagan

Hi Reagan,
You're not alone with the worries. Mine have lessened with each passing day. But, I do think about Moyamoya every day. Kind of hard not to when I rub my fingers over those dips and bumps while washing my hair each morning. It's been 1 year and 2 months for me since the surgeries. I'm not so worried any more about myself, but that only really happened in the last couple of months. I think maybe it's because I've gotten so busy with making plans and working in my business. There just isn't any time to worry about my health. Unfortunately, I'm also not as diligent about my diet and exercise. I'm absolutely certain though, that if symptoms return all my old worries will come flooding back.

This Moyamoya experience has changed me forever. But, I've met so many exceptional, and wonderful people because of it; people who will be forever dear to me. Those relationships now far outshine all those old fears and worries that came with the strokes, diagnosis and surgeries.

I think the advice others have given about attending a reunion is good. I went to the Vegas reunion and then we had a gathering here in August. Seeing how well others are coping with the disease and hearing their amazing and wonderful stories as well all the plans they have for the future, really helped me to feel hopeful. And besides, it was just plain old fun!

There's also a picnic in Stanford in May or June with the Stanford staff and Moyamoya families. I'm hoping to go this summer. I want to say thank you one more time.

I met with a psychologist every other week for about six months. My sessions ended just before Christmas. I won't hesitate to go back to him, if I feel the need to talk with someone in the future. He helped me a great deal.

Best wishes,
Kim

Reagan,
Slowly step into the diet and exersise. When exersising it is extreemly inportant not to push your self to hard. If you feel you need to quit and rest even if it was only after 5 minutes DO IT. I am talking form experece! I almost passed out since my blood pressure went crazy. I felt like my brain was trying to squeeze out the hole, just after 15 squats with no weights. I have built my self up to 30 minute arobics and then I have to rest for 15 minutes then 15 minute strength training. I inporve a bit every day. I am trying to shrink my resting time then I will combine my Strenght training with the arobics. This is what i am doing but you are diffrent so you might be able to do better(or worse) then me. This goes for other vigorus things you may do in bed. As far as Diet I try to keep it very ballanced. Good luck on everything. I hope this helps.
Becky