:)Hi everyone. I know it has been awhile since I wrote much here. And I kinda left you hanging on how my brother was doing. I was having a hard time adjusting without my sister(for the new ones, my sister passed away with MM). Seems like time made it harder for me. But I tried to take time today to let myself let out the pain. I am drained,, but at least feel like writing again. Anyway, my brothers surgery was in March, left side, direct bypass. Has had many problems since. Were just getting him straightened out,,, when he had a bleed. This was in the front. Now, keep in mind I am NOT >:( happy with his surgeon! Anyway, they drained the blood this afternoon(left tube as it is still draining). But they say he is fine! :o Doc said he must have hit his head, and that caused the bleed. He has not hit his head that he knows of. So doc said it could have been just a small bump, that probably didn't even hurt, that caused it. His right side still needs to be done,, but the occlusion isn't that much. I still feel the doc that did his surgery hasn't been on top of things at all. Do any of you have an opinion?  I plan on making myself, even on my down days, to continue to write. I am working on getting my sister's,(Bonnie), picture on here soon also. I got a job, only part time. Was afraid I couldn't handle full time yet. I am fine when I am there, but would come home and not care about anything. SO my house is falling apart! But my husband has been so patient with me. Of course, he is still having a hard time also. She was so much a part of our lives,,, and the ending of her life wasn't easy (watching what she had to go through). Yet she was so strong. She is my HERO!  Thanks to all,,,,MJS

MJS,

Sorry to hear that you have to keep on struggling with this dreadful MM. Not only by mourning for your sister but also by worrying about your brothers struggle with the very same disease. Sometimes I really wonder about how much one person has to go through before life turns. Just be sure we are thinking of you and praying for your strenght, all of us in their own way.

Take care and hang in there! :-*

Annica

MJS,

I cannot imagine your pain..but she is with Him looking over you.  Your sister will always be with you.  I will keep you both in my prayers

Glad to see you back

Janice

Sorry to hear about the problems you are having. I will keep you and your family in my prayers.

I am so sorry for all your pain and suffering. Remember that we are all always here for you to talk or vent. You will be in my thoughts and keep us posted on your brother. Take care and be strong my friend!

Christy

As of today, they have a drainage tube in the front of his head. He is sleeping alot. He tried to eat breakfast today, and got sick on it. They also had to change his pain meds after that, as his pain was pretty bad. Thats is all we know for now. Haven't seen the doc since he came out after the surgery on Friday afternoon. So still no answers for questions.  Thanks to everyone fro being so patient with me!   VERY SINCERELY   MJS

Well, it took them three to four days to drain the blood from the front of his head. He is home and has his next surgery planned of June 13. He is having loss of use of his left hand(his surgery in May was on the left side. Has problems with his legs also. His speech gets slurry at times and has much fatigue. Problems thinking too. But he seems to feel that napping helps these problems. How do we know when to pay attenition to these things as maybe serious,,, or just the recuping part? [smiley=huh.gif] I have had to guess things so much in the past year with my sister, and here I am still having to guess!!! :o The nuero who is doing the surgeries doesn't offer ANY, NONE :o info. What not to do, what to look for, NOTHING> Over all these messages, I cannot remember which ones to go back to to get info for him as he goes thry this. If anyone knows a certain post that may help me, I will print it out for him. He is finally wanting more answers. ALSO>>>> he said he heard that both parents must carry the recessive gene for the children to have it. Has anyone heard of this!! This is new to me, and he can't remember where he heard it.  Thanks for any answers you can help me with  Sincerely MJS452

MJ,

I'm really sorry that you are having to go through all this again.  I know it's probably very draining on you.  But you are a strong person in my book.  It's really amazing how strong we are when we are faced with such ordeals in our life.  Just remember to keep hanging in there.  

Just wanted to let you know that I have read in places that this disease can be carried by a gene.  There is a website that points this out that was actually mentioned in a post before.  The website is:  http://www003.upp.so-net.ne.jp/moya-moya/

Here it says:  

The recent genome researches for moyamoya disease suggested that the genetic locus was found in the chromosomes of no. 3, 6, and 17 among familial moyamoya disease.

These studies should be interpreted with caution: the results (statistical analyses) suggest the genetic locus is roughly located in the chromosomes of no. 3, 6, and 17 only among familial moyamoya disease.

Further study is required to pin-point the gene related to moyamoya disease. Using these data to the clinical diagnosis and possible treatment is still beyond the horizon.

I'm not sure how true this is as it looks like there needs to be more research on this.  I hope this helps in some ways.  

I'll be praying for you and your brother.  

Michelle

I am also praying for your brother and you.
                     Nancy