Hi Linda, 

Welcome back. I'm so sorry to hear you're having problems. I don’t think you’ve gone insane at all Linda, I think when you’re dealing with the brain, it’s just so complex and delicate, and remember you’ve been through a lot.

Every MM case is different because of each individual’s personal factors involved. It’s not that it was successful for everyone and not you, necessarily. Yes, it was successful for many in getting the needed blood to the brain, but not without their individual struggles in some way; depending on what areas of the brain that was affected by MM. For example, many had prior strokes, damaging cells in areas of the brain associated with different functions. Perhaps MMD affected the part of their brain that had a direct link to their intellectual functions, speech, motor skills (like my niece Mandy) or involuntary movements, emotional functions, sleep, vision, etc. Many speak of all these problems even after successful surgery because that’s the area of the brain MMD affected in one way or another.

Here is a link to a thread where many discussed their problems coping after their surgery. You can PM any of these people and I’m sure they’ll discuss things with you and you’ll see you’re not alone.
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1159203951

I don’t know your specifics, but I certainly know you’ve been through a lot, God love ya. I say give yourself time. Your brain is truly amazing and you are amazing for conquering what you have thus far. Hang in there.

You’ll be in my thoughts and payers.

Mar

Hi Linda, you're not alone, I going through problem like you right now, I seeing OT, PT, many difference neuro test, seeing psychiatric & counseler also, and yes I was think I'm insane because see other MM patient doing so well after surgery and I keep asking what wrong with me? I can't drive due to my mind lost , my memmory is bad, i have major depression, my concentrade is gone, (I think my head is empty inside .
Any way, hanging in there, hope thing will going to get better
Hug,
Kieu

Thank you for all your posts!  It's good to know I am not alone!

Everyone of you are such a help in any situation that arises for me!

i try to keep my chin up but some days it's very hard.

My husband is my rock alos.  At times he and my son just over look my blunderings - and other times they just have to laugh - as my husband says to keep from crying.  My son has become distant since surgery - trying not to upset me and a lot of times I feel very shut out - he is 17!

God bless you all and even though we have never met in person I appreciate and love you all!  Still haning in there and taking one day at a time!

With love and God bless!
Linda

I am not sure what to say.........Robert has shown the oppisite pre surgery he was a emotional wreck and creid at almost anything.....since surgery he is alot better on controling his emotions............I am not familiar with all of yours history  but robert showed 0 damage from strokes presurgery maybe this has something to do with it.

Hello Linda,

and thank you for posting such an interesting and "brave" topic. Noboby likes to mention the fact they might have emotional or mental issues.

I am almost 9 months post surgery and in general....doing much better. I feel my brain fog is soooo much better and my concentration issues are better as well......however, they are certainly not as dynamic as they once were. That is frustrating....to say the least. I realize I have permanent damage that will never recover fully. I have to learn how to accept that. It is hard, because it is UNSEEN damage...so everyone around you assumes that you are fine....although you are struggling with real cognitive and emotional issues.


My family "thinks" they are supportive....but in reality they are all high achievers and add a lot of pressure and stress to my daily life. Everyone delegates "mom" to be their personal secretary, valet and maid! That's a professional husband, and 3 college sons....and twins (boy/girl) aged 11yrs. AND my house is listed for sale with showings always a phone call away.

I wake at 7am and never sleep before midnight. I rarely get a nap or have any down time or personal time. I cook a hot breakfast for my kids every day and a full sit down meal every evening......I wish they would just help in clearing the table or washing the dishes.....nope....I finish in the kitchen by 10pm and it sucks.....I should be resting.

I seem to still have cronic dizzyness and headaches and well....lots of sx's (although less severe) and everyone thinks now that I have had the surgery...."I am Fixed" everything is behind us now. I am a tad bitter....because pre-diagnosis...no one believed me and I worked so hard every day while feeling so ill and if I needed to rest they called it "fibroMYexcuse" instead of fibromyalgia!
Now that I have had the diagnosis and surgery.....well, I would have thought everyone would respect Mom's health issues. Instead....I am supposed to be FIXED and now "get back to life"

So....as for the topic at hand.....I do feel much more emotional and less tolerant of stress than ever before and I seem be more cranky lately.....but is it from the MoyaMoya.....or could it be just the lack of sensitivity from my family????? Most likely it is a combination of both!

I love them all so much and they are a family to be proud of, but I just want everyone to pick up after themselves....so I can get some much needed rest!!!!

OK....I have gotten off the soapbox (but I dusted and polished it first) ...sorry for the rant   Yikes.....I think I have Suzie Homemakers disease! (I heard it is a horrible, progressive, incurable disease....that could easily put you in an early grave!)   

Hugs to ya....Diane

Very well said Russ.

Hi Diane, you said it all, I feel so alone time to time, I still have so much problem of MM to deal with but as my hair grow long cover those 2 long scar on my head I'm look fine, not thing wrong with me, people would say: you look great. Yeer right they don't know I'm in pain right now, they don't know that when i wake up this morning my leg numb, they don't know I just pop 2 headache pill in my mouth.etc......I could go on.  I'm keep most everything for myself now because I don't want my husband worry, and also I don't want my family and my in-law family said what you call "wet blanket".

I see neuropsychologist every other week to help me to deal with this daily life.  I would love to have a good cry, but some how I can't cry  and 1/2 lb of hershey's chocolate didn't help either.

Any way, hang in there with me, hopefully over the time thing will getting better.

Hug
Kieu

hmmm....what sucks the most is my "short term" memory is shot. That is my biggest daily challenge.

Today, I returned 3 times to my home office after getting a weight on something....by the time I got to my computer....I was confused about which number it was and had to wiegh it over....then, again....and yet again.

Forget about when someone gives me directions or an appointment date over the phone....right after I hang up....I am squeezing my brain to remember what was said. It's like I draw a blank!

I feel like I have Adult ADD. If anyone interupts me while I am in a task......I risk forgeting what I was actually doing and might move on to something else. Yikes!

I must rely on .....making lists....talking to myself while driving...going over repeatedly what I need to do or get. Seems I put an awful lot of time and energy into trying "not" to forget things...lol!!!

I used to have a fantastic memory (very detail oriented).....but that seems like another lifetime ago.

I also try very hard to cover-up and mask the mistakes I make...as it makes me feel quite "stupid"

But hey....don't get me wrong.....I feel blessed overall and I try not to dwell on the negatives....as it won't change anything....I really believe we need to be positive and laugh at all of this.....but it really scares me to the core.....knowing what I am capable of forgeting.

The worst was when I got a cell phone call  from the school nurse, that I needed to pick up my sick daughter at school.....I told her I was 30 minutes away....and I will head right over....meanwhile I stopped for milk and bread. When I got back into my car I totally forgot that I needed to pick up my daughter! I arrived home and luckily, my older son asked "where is she?" I was completely floored! I never admitted to forgeting....said I just needed to stop home, put the milk away and use the bathroom then head out to the school. If my son wasn't there.....I wonder "when" I would have remembered my sick little girl????? That situation really tells it all!

Ok....you guys must promise not to tell my secrets.....I have worked way too hard trying to to cover my tracks.

I will bribe you with endless cyber chocolate!

Smiles ..... Diane

Hi Diane, I know what you are going thru. I even have my hubby call the doctor when I need to go because I don't remember what he says. I will make a list and forget to take it. Or drive somewhere and forget where I was going. I have to write everything on the calender and still forget. I don't like this but am still here and will deal with this one day at a time.
  Take care and god bless, Sharon

It me again, talk about absent mind, I forgot to mention on my post that the daily planner is work very good for me, I wrote down everything from appt, to kid swim practice, to go somewhere or plan to do something on next day, and also I wrote down what I have done today, who do I talk to or who call or what happen etc....I take it with me in my bag everywhere I go and also I put down all my medical information and emergency number , that book is very useful.  My neuropsychologist is suggest me about this planner book, hope it work for you.

Hi Diane,.....I hope you include your family in the loop. I was also used to be the one to do everything. Now I can't. My family knows what can do and also what I can't. Sometimes they are overprotcive but have never thought I was incompetent. It takes me an hour to write three checks to pay bills. My husband calls the doctor to see him because I forget. He also goes with me when I go to remind me what is said. Please don't feel you are incompetent. We are all specilal and need the support of family.

Take care, Sharon

Hi Trina,

It is my night time check-in, I don't post much any more because it take long time for me to gather my thought, but I check this board almost every night. ( just for a better night sleep )