Hi

    I am posting this topic as a very hurt, frustrated individual.  :-[  Sorry.  I have been diagnosed with MM, told I can't work, and have some very trying days.  I need help getting through to my family.  My mother and husband, mostly.  They think my neurologist is crazy.  Maybe he is!!  I would sure like to be told that I didn't have MM.  But, with four neuro-specialists conferring and all determining the same thing, shouldn't I believe them.  My husband has become hateful.  Telling me that my 'sickness' has made his life inconvenient.  And, both he and my Mom say to get past it.  'It's in your head.'  Well, it is all in my head!!  How can I make them to understand that I need help with my kids and help washing my hair  :-[?  I'm now struggling to remember to pay my bills and to keep appts.  Today, I was playing Scrabble (I love this game) and my friend asked me what was wrong?  I had been sitting there for about 15 minutes trying to play.  I had to actually stop and think each time I wanted to move my hand.  Am I becoming retarded?  What is going on? Is this strange?  Can the TIA's cause this?  My neurologist tried to explain to both what was going on, but I'm progressively getting worse.  He has placed me on daily aspirin and LOTS OF FLUIDS to try and help with the daily headaches and spells. It's been really hard on me and basically needed to vent.  I just want someone in my family to be there for me and my kids.  I'm scared, too.  sorry, everyone.

Lee

Lee,

I don't know what to say.  I am new to this disease too, but it's not me who has it, it is my baby who is now 13 months.  He has had two strokes, the last one left him unable to move the left side of his body as well as he should and because of this he has some developmental delays (hopefully just because he is unable to move that side of his body), right before he turned one he had surgeries on both sides of his head.  We will not know until December if the surgeries have helped.  

I know how you feels, sort of.  People outside of this disease do not always understand.  I know people think that I am nuts because I worry about Trey drinking enough and if he has had enough wet diapers.  Then there is the whole going outside and getting hot and dehydrating.  No matter how much of a breeze or water that is taken with us...............

This is not about me.  I will pray for you and your family.  Go to God, He can ease your pain.  Give your troubles to Him.  I hope all goes well for you, Lee.  Please keep us posted.

Good luck,
Michell

Hi Lee,

I'm sorry to hear that you are going through such a tough time right now. You have however found a great support network on this website. Please let us help you as much as you and we can. Until you find a source like this, things can feel a little lonely. Neurologists may understand to a certain extent how things can feel physically as those around you can, but they cannot feel what this feels like emotionally. Perhaps you can direct your family to this website? All people cope differently and this may be some kind of defence mechanism reaction - I don't know, I'm no expert and I don't want you or them to feel you are being patronised.

As for struggling to remember things and having to think when you need to move, I understand what that feels like. You're not becoming retarded - I've been scared of that for myself too. Have you had any psychometric testing done? I've had it done a few times - it's like an IQ test, testing reaction times, memory recall and mental process skills. I carry a diary around with me so if I have anything to remember, I write it down. The same applies when I go and see my doctors - I write down descriptions of any bad spells I have - it will help them as well as yourself. I've also had a couple of spells that I describe as 'freeze frame' spells. One happend when I was crossing a road on my way to work and the other at the top of stairs. I remember thinking that it's time to cross the road but then couldn't move my legs and had to really 'think hard' to make the muscles in my legs work. When I got into work and sat at my desk, everything seemed slow and thinking became difficult. Anyway, I told my doctors about this and they aren't worried about it - hopefully, these were one off incidents (touch wood) but I was told that if it happens again then I may need to have an EEG done as they sound like some form of epileptic type episode.

I don't want to go on about my problems to you but I have found that just typing it out and explaining things to people here, helps me. That is why I'm so grateful for this site being here and the support that it can provide by people to people who have first hand experience.

Has surgery been suggested to you? I have had surgery on both sides done. I hope that everything works out for you and things ease up. We're here, thinking of you, wishing you well.

Best Wishes,

Roselyn

Lee,
I'm sorry to hear how your family is handling this. It is a very scary disease, my 12-year-old son has it. He had surgery on both side just over a year ago. Finding the right doctors and good support is key in overcoming this. I will put you and your family in my prayers.
Rena

Thank you all!!

I feel bad that I was going on about my problems.  Sorry.  I appreciate you sharing with me.  To: Rena and Roz:  I can't imagine the emotional turmoil of having my children sick.  I pray for a full recovery and happy lives for your babies ( they'll always be babies, even when they are old, lol).  To:  Michele:  I'm so glad you shared what you have gone through.  It helps me to understand the 'episodes' and gives me hope that surgery might help.  

Prayer is a powerful tool and it seems like I tie up God's time because I pray so much.  Today, I'll say a prayer of wonderful thanks for such caring people.  You each took the time to lend me an ear and I can't describe how wonderful it is to have such a support group to go to.  I have copied an e-mail sent to me from an old college friend.  It just gives me a little hope.  

God's Cake

>         Sometimes we wonder, "What did I do to deserve
>         this", or "Why did God have to do this to me". Here
>         is a wonderful explanation!
>         A daughter is telling her Mother how everything is
>         going wrong, she's failing algebra, her boyfriend
>         broke up with her and her best friend is moving
>         away.
>         Meanwhile, her Mother is baking a cake and asks
>         her daughter if she would like a snack, and the
>         daughter says, "Absolutely Mom, I love your cake."
>         "Here, have some cooking oil," her Mother
>         offers. "Yuck" says her daughter.
>         "How about a couple raw eggs?"
>         "Gross, Mom!"
>         "Would you like some flour then? Or maybe baking
>         soda?" "Mom, those are all yucky!"
>         To which the mother replies: "Yes, all those
>         things seem bad all by themselves. But when they are
>         put together in the right way, they make a
>         wonderfully delicious cake!
>         God works the same way. Many times we wonder why
>         He would let us go through such bad and difficult
>         times. But God knows that when He puts these things
>         all in His order, they always work for good! We just
>         have to trust Him and, eventually, they will all
>         make something wonderful!
>         God is crazy about you. He sends you flowers
>         every spring and a sunrise every morning.
>         Whenever you want to talk, He'll listen. He can
>         live anywhere in the universe, and He chose your
>         heart.
>         If you like this, send this on to the people you
>         really care about. I did.
>         I hope your day is a "piece of cake!"
>         Life may not be the party we hoped for, but
>         while we are here we might as well dance


I WILL CONTINUE TO KEEP THE MM FAMILIES IN MY PRAYERS!!  MAY GOD BLESS EACH OF US IN A SPECIAL WAY.

Hey, you weren't 'going on' about your problems, so don't feel bad - I'm sorry if I made it sound as if you were! I was worried that I was going on about mine! Just wanted to let you know my experiences so that you didn't feel as if they are 'strange' or that you are alone. I understand the need to vent  :)

Hi Lee and welcome to us!

I have a 8 year old daughter with this disease and along with everyone else on this site i know just how scared, frustrated, worried and unhappy you are about everything you have to go thru right now. We´ve all been there one way or the other. It breaks my heart to hear how your family are dealing with your disease, you need them so much right now and I think they´re acting the way they are simply because they are just as scared as you are and they just want the disease to go away, you know close your eyes for the gost and it´ll be gone! Try to find them someone outside to talk to about this, maybe a doctor or a nurse or just some wise, caring person near you, that might help.

I wish you good luck and will be thinking of you!

Annica

Daisy I sent you a (Pm) private message back I want to make sure you know I sent it so you get it.
                    Nancy
                         

Hi Daisy. You have absolutely NOTHING to feel bad about. I'm sure everyone would agree that that is what we are here for. My mom has MM. None of us had any idea until she suddenly suffered a massive brain hemmorage, and even then she wasn't properly diagnosed until almost two years later(June of this year)when she had another one, this one even bigger than the first. She will be having surgery at Stanford on the 24th of this month. It is a good thing that you have been diagnosed before any of this happened. You might want to consider getting another opinoin from Dr. Stienberg at Stanford. I am so sorry your family is acting the way that they are. It is probably like Annica said and they are just scared and want it to go away. It is alot easier for some of us to close our eyes and try to make it not be happening, but that never works(unfortunately) I hope everything turns around for you and your family. Rest a little easier knowing that we are all here and understand [smiley=winkkiss.gif]                 If you would like, I can PM you and tell you a little of what I went through with a member of my family too. Just let me know.                                     Nikki

Lee,

Please don't feel that you are going on and on about your situation.  If it weren't for people here sharing about what they're going through, lots of people might feel that they are going through it all alone.

What may (and I don't know, of course) be the problem for your husband and mother is that this is such a mysterious and uncommon disease.  (Although there are LOTS more people here than should be, if we believe the statistics!)  Because it's not something they've heard of or are familiar with, they may have trouble making themselves believe it exists.  It may be, as others have suggested, that they too are afraid and don't feel ready to be the support you need.  They may be denying it to themselves as a defense mechanism.

I'm not here much anymore, and I am not the person in my life with MM; it's my sister Pat, who lives 3000 miles away from me.  But I can promise you that you will learn a lot more about your disease here than you will anywhere else online.  Perhaps you can gradually share what you learn with your family.  You may need to start mainly with medical stuff they HAVE heard of, such as strokes, seizures, and aneurysms, though I am not sure all of those, other than strokes are equally common to those with moyamoya.

I will pray for you.  It can't be fun to 1. learn you have a serious disease, 2. find your family isn't supporting you, and 3. feel all alone, since you don't personally know anyone else who has even HEARD of this disease.

Keep coming here.  It will certainly help you know you're not alone.

God Bless,
Diane

Dear Daisy,

Glad you found this board!  Welcome!
Though I don't have MM (my son does), I've had family not be supportive when it was new and I was struggling to deal with it all (unanswered questions, insurance denials, a child who can't talk anymore or use his dominate side (thankfully, he recovered almost all that!), and another child under 2!).  But, like you, I found strength with God - I absolutely LOVED your poem!  I printed it and will give it to Kyle when he gets home from Scouts, then whenever he whines "I wish I'd never had a stroke!", I'll offer him a "piece of cake"!  Then he'll probably throw something at me!

God bless you

sue

p.s. have you talked with your clergy? - perhaps he/she could advocate with your family for you.  They definitely need to get on your side!  Keep us posted!

[smiley=hug.gif]Daisy, when I read your post, I burst into tears, literally!!!  I just wanted to send you a big hug from Louisiana.  I LOVED your poem.  I will copy it and send it on to several of my friends and family if you don't mind.  It was just beautiful.  Now, on to the MM.  I am a 39 year old female who suffered from terrible headaches for 12  years.  Doctors were treating me for migraines all these years.  I suffered a stroke on Jan. 25th of this year.  I lost all function on the left side of my body along with speech for only about   30 minutes during the middle of the night.  Before getting to the hospital, I had suffered 2 more.  After having a CT and MRI, the doctors here in Louisiana  said that I did in fact have a stroke, but saw something funny on the MRI.  They thought I either had a brain tumor or MS.  They sent me for a second opinion to Dallas, which is where my parents live.  I was sent there and in 24 hours, after an angiogram, was diagnosed with MM.  I am in the "waiting stage" until the disease progresses further. I have contacted Dr. Steinberg in Calif. and he has reviewed my angio and agrees with my neuro in Dallas to keep me on my meds for now and follow me.  I just got back from Dallas for a cerebral blood flow test.  I haven't gotten the results back yet ( should be tomorrow or  Wed).  But I  know what you mean about having family members not being very supportive.  Especially husbands.  I think they deal with illnesses and disease in a different way.  I believe my husband didn't want to bring it up much because he thought that if he did, it would upset me more.  And sometimes if they don't mention it, maybe it will go away!!!  My heart goes out to you because I fully understand where you are coming from.  Since I was just recently diagnosed also, I have found close friends that I share with and cry with.  And as you said, prayer and a relationship with the good Lord is imperative!!!  Please keep you chin up  and if I can help you in any way, please let me know.  Lots of love from Louisiana!! Laura ;)

Lee,
I have to agree with the others, you weren't going on about your problems. It is hard to go thru this, let alone having to do it alone. I had just seperated from my husband when Tyler had his storke, my ex just pulled away from Tyler and I both all the more. This site was my sole support through all the test, questions and even the surgeries (Tyler and I went alone to Stanford for the surgeries, and my family lives 2,000 miles away). People would help to get Tyler to Stanford, but couldn't loan emotional support, they were as confused as I was.
Keep praying and all will work for the best. We might not understand why things happen as they do, but in the long scope of things it all works out. I will continue to pray for your family to be able to support and help you through this. Just always know you have all of the wonderful support of this site.

I can not imagine calling my wife who has MM an inconvenience or rather I can not imagine what she would do to me if I called her an inconvenience.  I believe she would have her own version of a STA-MCA bypass for my head.   ;;D  It is true that we all suffer and it not only changes the individual with MM, but the whole family.  We all become victims of MM when it strikes a family member.  Everything is put on hold and the focus is concentrated on the illness.  The key is not to blame the person with MM for this hold on life.   It is not like they asked for this disease.  The key is to support them and embrace them.  Always remember you are going to need their help someday.  You do not need them to remember the blame of burden you labeled them with.  Oh my wife would be the first one to bring that up when I have a problem.  Anyway, remember the last thing MM people want to be is a burden and to put your life on hold.  When my wife was diagnosed, she cried because I could not quit my job and that our daughter could not go to Japan.  It is unbelievable how selfless people can be.  Anyway just understand that you will get better and you will always have our support.

Lots of Love

Wayne

Well said, Wayne!

Lee -  You absolutely, with out a doubt, have our support.  Have you tried suggesting your family visit this website?  You know - this might be a reaction out of fear.  When I was first diagnosed and I found out that surgery was the only option for me - well, my mother fought me tooth and nail about jumping into surgery.  It wasn't until she heard my surgeon speak and explain the situation that she gave in and realized that it was necessary.  Good luck!  Again - you have our support!

-Shari

WOW!!!  To Everyone:

    With tears streaming down my face, I come to you with such appreciation and love.  Your simple words touch me to the depths.  As for my husband and Mom, they have a complete turn around recently.  Nancy N.  shared her daughter's story with me.  (Bless You!) After reading it ( I had to print it out), both finally realized how serious MM can be.  Of course, on Monday I went to see a neurology specialist @ UVA in Charlottesville, VA.  LONG DAY!  Everything has happened so fast!!  But, now my family (and I) have a better understanding of what to expect.  My husband is scared spitless.  My Mom is calling in the National Guard to sit on me.  LOL   [smiley=laugh.gif]    

    My doctor is Dr. Karen Johnston, director of Neurology, @ UVA.  My family and I spoke with her, then I had a CT Angio.  Yuck!  It was worse than the MRI.  I have Primary MOYA-MOYA.  It is in my genes.  My children could have it.  I have been having TIA's for years and thought they were complex migraines.  Both sides are occluded.  I am looking @ 100% on the left side and about 90% on the right.  Basically, she said I am symptomatic on a daily basis because I have used up all of my resources to get blood to my brain.  She doesn't want me to do much of anything!!  At least, that's what it seems like.  No singing, no exercising, no more getting upset.  Among some other daily routine things.  Ughgh.  But, this is just for now.  I go in on 8/9/04 for a full angiogram.  Dr. Cossell, the vascular neurosurgeon will then plan the surgery.  Then, if I keep myself stable (less symptomatic) for at least a week.  He will do the direct by-pass (EDMS) on both sides.  He plans to do both, but will stop after the first side if any signs of distress or imminent stroke.  Can u believe they can see all this while doing the surgery?  Amazing.  :o

    My family and friends are terrified of the surgery.  They don't want me to have it because of the high-risk of stroke.  I told them it was a 'simple' surgery.  They looked at me in astonishment, 'It's BRAIN SURGERY!"   :)  No biggie.  I guess I'm calmer about it because I understand the procedure better than them.  Of course, it isn't 'simple', but it is textbook and has been performed before.  Before long, it will be like performing an appendectomy.  Well, not quite, but you know how advanced technology is.  But, I explained that I would rather take the chance to live healthier and better than I ever have.  If not for the surgery, I am looking at a massive stroke withing the next year, if not months.  I don't want to live like this anymore.  I want to see my children grown.  So, I put all this into God's capable hands.  I have complete faith that he will carry me through this.  

[smiley=hug.gif]  Here are hugs to each of you for all of your support.  I'm giving God another request to bless each of you.  ( If I keep nagging, he won't forget)

Lee,

Wow, lots of information!  Two incredibly wonderful things:  1) now you know what you're dealing with, and how you'll proceed, and 2) you're family is getting it!  I am so happy for you!

A diagnosis of MM is hard to swallow.  Our 17 year old daughter has it . . . diagnosed just this last May . . . fortunately before the occurrence of a "major event".  We had some difficulties with family members, too.  "Why do you have to move forward so quickly with surgery?  Shouldn't you seek several other opinions before proceeding?", etc.   With information and understanding though, they quickly "got it".

As others have written, just pay attention to your body and its signals.  We all have a hard time slowing our lives down, but it's really important.  Know that we are all pulling for you, and will look forward to your updates.  You've found what a wonderful support system exists here, but give your fears to God, too.  Lots of love to you and your family!

Jill

Daisy,
        I am half in tears I am so happy for you,  ;;D your family is on board, the support is so so very important. Keep us updated. Our thoughts and prayers are with you.
                      Nancy ;)

Daisy your story is just like my wife's story.  She had complete occlusion on the left side and 90% on the right.  Her case is also primary, but don't think so hard about your children, it is rare for them to get it even in primary cases.  I have read from an article for the University of Osaka, about skips in multiple generations and cases it did not show up again in some families.  No one can say for 100% about anything.

Everything will move fast for you, but it will be all over soon and you can just move on. Having primary MM has one benefit, there are no other conditions and other illness to worry about that contributes in cases with secondary MM. I read so many stories of head trauma, MS, Sickle Cell, Fibro Muscular Displasia, etc. and they must overcome those issues as well. It is also good that they are moving on you fast, especially since you do not have any blood reserves.  My wife had 30 % blood reserves, but we did not wait around for it to drop further.  The key is to beat the stroke, so you can avoid any permanent damage.  Sometimes after the diagnosis, it takes forever to get into surgery, which is when you kick and scream to the gate keeper of the surgeon’s office or make your hubby do it so you can avoid the stress.  That is when those TIA start making you forgetful.  My wife had her TIA on the left side of the brain, so she would forget her English and I would have to speak to her in Japanese (left side holds the secondary language).  She would also forget how to operate things and add for about 30 min.  That would only happen in stressful and over active times.    

As far as having a stroke in surgery, it is a very small percentage of people who have a stroke.  If it happens it happens at the beginning and ending of general anesthetic.  The way my wife looked at it is, if I do not do this I will have a stroke anyway.  And again it is so rare, and the fact that you are healthy makes it even rarer.  At least you are getting both sides done at the same time.  My wife has only done the more critical side.  Her doctor does multiple burr holes as well as the bypass, so it takes 10 hours each side.  Oh it is good that your hubby turned around, and now you must do something for him, gets as many people to hang out with him during the surgery as you can.  Those hours will be the hardest unbearable hours of his entire life.  I had to do it alone and it was painful.  Anyway good luck and don’t you hate when everyone gives you advice?

Wayne

Wayne,

    Thank you.  And, no I LOVE the advice.   [smiley=laugh.gif]  I will be sure and tell my husband all about that.  He's pretty lucky, because he is close with my family and all my friends.  Of course, right now everyone wants to be there for my surgery.  So, he'll probably be overwhelmed by people trying to smother him.  LOL  

    You have eased my mind about my children.  thank you for sharing your wife's experience.  And, your experience.  Your post sounds so much like my doctor talking, that I wondered if you were a doctor.  It's wonderful that everyone on here can share every bit of information they have gained.  These little tidbits keep the hope (and sanity) alive for each of us 'newbies'.

    Thank you again for being so well informed and sharing it.   would love to talk with you more!?!

Lee

Lee,
I'm glad everything is going forward for you, so glad your family has come around. I will keep you all in my prayers.

Daisy....my heart goes out to you.  I read your first message when it first came on and "know" how you feel.  I don't have MM myself...but my little girl, Cara, does...but I have other problems myself (B12 defiency (has MS like symptoms if without B12 shots)..so am still recovering from nerve damage)..plus now Type one diabetic..so need insulin shots....hard to think about "myself" when my little girl has MM.  And I am also totally deaf (im used to that and don't consider it a problem)...have 3 teenage boys who didn't think their sister's condition was as BIG of a deal at first...as I made it sound....until after her first surgery, a mild stroke that night on her other side...which "took" her spirit that "drove her brothers crazy"...but they miss that in her so very much....wonder "will Cara ever be the same again"....she has come a long way this past three weeks with OT and PT therapy and starting in Kindergarten again.  Everyone in her life has no clue of MM either...and they saw the seriousness of it after interacting with Cara....her second surgery is approaching FAST...to be at the Mayo in Rochester on August 23rd with Dr. Fredric Meyer as her surgeon.  She was 100% occluded on the right and about 30% on the left but since she had the mild stroke on the left they recommend we not wait too long to the left.   Everyone in our family has come around, friends, too with more understanding and realizing how "real" and "serious" this is, how neccessary it was to have the surgery.  I am as a mom more scared facing the second one but more impressed with the recovery she has had the past few weeks and hope after the second surgery it is all uphill from then and on.  So glad you found this board...and yes I feel so at home here....the word "rambling on" doesn't apply..."talk all you need to"...cuz  you do feel better.  :-)

Tight hugs,  CarasMOM

PS  The picture of Cara was taken 3 wks after her first surgery...so shes looking good, feeling good...mind still not quite with it but getting better though.  :-)

Hi Ann! :)

Just wanted to share with you that my daughter Louise had both sides done under the same anesthesia (sp?) and it took almost 15 hours altogether. The longest 15 hours in my entire life I might add: At the time I wasn´t too happy about the long anesthesia but the doctors explained that the risky parts of it is "going into it" and "getting out of it" and they kept track of her condition very closely, ready to take her out of it quickly if something wasn´t going right.
Today, 20 months later I am glad she had both sides done at the same time, saved her time in the hospital and I believe it would have been hard to motivate her to go thru the hole thing again.
I have to agree with Wayne: tell your husband to keep busy during surgery and around people that love him and are ready to support him because the waiting was hell.!!!!!!! :o :o :'( I and Louises dad went christmasshopping during surgery, staying in contact with the surgeryteam on the callphone every hour for reports and I think that stopped me from going insane!! ::)
I wish you the best of luck and be sure we all know how you and your loved ones feel. :-*

Take care and lots of hugs to you! ;)


Annica

Sorry!

I know you´re Lee and not Ann but I am a confused person and awful with names!!
Sorry again Lee (and Ann who I recently posted on this board(Ithink))!! :- :-/ :-[ :-[ :-[

Annica (I think) :-/

Lee -

This is great news!  I'm so happy that you have a support system in you family now!  (And, of course, your MM family!)

You have the right attitude about your surgery.  My attitude was this - I have a problem.  Let's fix it!  I only had a minor stroke - nothing debilitating or damaging - which led to my diagnosis.  However, before my surgery, I felt like a ticking time-bomb!  The wait for the surgery is the hardest part.  Hang in there - it will soon be behind you.  My surgery was with Dr. Scott in Boston.  I had 2 surgeries, a week apart.

Sounds like you have a knowledgable doctor and surgeon and you are on your way to success!!  Good for you!  Keep up the good work and good luck!

-Shari

Hi Lee,

Am really glad and happy for you that things are moving forward and you now have the support that you need. Good Luck with your angiogram and surgeries.

I didn't know there are 'primary' and 'secondary' Moya Moyas. Have just read Wayne's response on it. I'm learning quite a bit on this site!

Best wishes to you and your family,

Roselyn

Hey, everyone.

    Just wanted to chat.  Need a little more help.  Typing may be stilted.  I have lost feeling in my left arm.  UGHH!!  I think I was just handed some 'raw egg' for the cake.  I'm very emotional.  Of course, you all understand how your life gets turned inside out and upside down by this 'lovely' disease.  I just figured out how dumb I am about the surgery.  The EDMS I mentioned is NOT  the direct by-pass surgery.  Not sure what it is exactly, but Dr. Cossell said I need to get in there quick.  Too many black-out episodes recently.  I might be going in right after my angiogram for surgery.  
    Just curious.  Has anyone w/ MM battled with emotional outbursts?  I think I'm falling into a depression.  I've been so mean and hateful lately.  Crying and throwing tantrums.  I'm acting like a child.  I'm ashamed of myself because I'm hurting the ones I love.  I'm trying very hard to stop crying at everything.  Trying very hard to stop being hateful.  It's not my loved ones fault that I have to stop living my life.  I miss my fast-paced life of stress and non-stop action.  LOL  No, I really miss it.  
    I'm having a pity party today.  Anyone want to join in?   :-[  Sorry.

ps.  quitting smoking too!!!  Sorry.

Daisy...hang in there.  My little Cara had her second surgery a week ago.  But after her first one she lost her "personality".."spark of life"...was expressionless and when doing occupational therapy had no patience and wanted to get one task over with and onto the next so fast...very complusive !!!!  so unlike her.   That was after the first surgery on the right and the left had a stroke (possibly two of them)...but after her second surgery on the left....the additional blood flow (and oxygen to her brain) probably helped bring her personality back...shes so with it that has been overdoing things and getting a little TIA here and there for few seconds...lost of right hand for few minutes but she somehow massages it and plays with her hands and it comes back.   I would have to say...your condition is affecting your emotions most definitely...even Cara's Dr. Meyer said that the disease is progressive and there are going to be moments that may not seem right especially after surgery when it takes a while for the arteries to grow and give able blood supply even though you get additional blood supply  (depends on which surgeries you get)...Cara had both the EMS and STA-MCA surgeries on both sides.   Before I was diagnosed with the B12 defiency (which is when your body lacks to absorb vitamin B12 from the food in the stomach...slowly your red blood cells lose the oxgyen it carries throughout your body including the brain)...in my case...I went through so many emotional outbursts but out of my control.  So feel free to vent, get it all out right here....I know how it is (I even have 3 teenage boys to raise along with Cara)...every little thing that was wrong drove me insane....but am much better now..so hang in there, sweetie.

BIG, BIG Hugs to you Daisy,

CarasMOM

Thank you, CarasMom!!

   But, I think you are too nice.  I've been soooo mean lately.  I thank the good Lord that Cara has come through surgery okay.  I also will continue to pray for her AND YOU!!  It must be very difficult to be ill, when all you want is to care for your daughter.  I hope God gives you many blessings on top of the ones he's given Cara.

Lee   ;)

Hey Lee,

Was on vacation with my family for a spell and returned and read your message.  

As far as changes in your personallity, there was a post called personallity changes that I commented on so the message could be listed on the top of the board.  Please read it, because you are not alone.  As far as your family goes, I am sure they will be there and understand that this is part of the illness.  It is tough for family members from the point of wanting their love one to be happy and back to normal.  They want to hug and hold you so bad, in hopes it will go away soon.  It will go away, and you will be back to normal again.  It hurts, but they are all focused on you and will always be there.  It is an adjustment that very few people in the world have to deal with, so there is no standard as far as love goes.  They also want to help you so much and it hurts them that they can not fix it themselves and must rely on someone (doctor) to do the right thing.  ( I sound like a control freak).

I am happy that you are getting more attention from the doctors and a sense of urgency is being placed on you.  I most add it is key you get in there and have the surgery done now.  It sounds like you are going to get the angiogram, so the doctors know how to perform the proceedure and it only takes a few minutes for them to understand what to do.  That is why they may do the surgery right after the angiogram, along with the urgency of the surgery.  

Just get it done and this will all be a blast from the past. Take it easy and stop worrying, that is your families job.  Just get ready for the surgery and you will be able to click your hills three times and you will be back home.  Sounds like a fairytail, but there is a lot of truth to it.

Take care

Wayne

[smiley=huh.gif]

    Hi Lee, your story really touched me so this is for you

    It's common to be at a loss while dealing with our cross.  Around you, you may build the walls of your fort if your dealing alone without family support.  This rare disease is so confusing and scary.  It confounds most doctors and that makes us wary.  Some of us have it and some of us watch it either way it's a pile of poop.  though it's tough for our families to deal with us, face it we're the ones  in the soup. >:( :)  It's easy, I've been there to feel sorry for ourselves when we've been dealt a bad hand. Keep your faith in God continue to pray this is all just part of his plan.  A plan that is best for you in the long run but the road it takes may not be much fun.  Keep it together try to be strong.  But remember it's not what happens to us in life but how we handle the pain and strife.

Take care love ya.  Tom Gallucci

Hey,,, I get what you are saying. My sister, who is 55 yrs, has Downs Syndrome and Mental Retardation, has MM. Found out this past April. She is not a canditate for surgery, and they are astonded she is alive today. Let alone still moving and talking. She had alot of problems with her "leg and hand being asleep" as she puts it. But, she too has had some major mood swings. This is something she never had before. They are steadly getting worse. SHe will be on top of the world one second and shaking, crying and terrified the next. And she doesn't even understand what her broken foot means! She is a VERY great person, just different. This has been very hard on her, as me too. I stay with her 24-7. My husband has been great about it(as we haven't even slept in the same bed since all this happened. We don't go anywhere, or do anything. But,, we don't even mind it! Love will go to extremes, without any problems. It will endure.  We put her on a anti seizure med. Someone on this board told me it sounded like she was having "comples partial sezures". Not ONE of all the docs even considered it, until I asked. The med has helped her alot. Not neat as much "spacey" times,, or "tuning out" for a few. She even felt more her old self after a few weeks on it. We saw a major change, all for the better, in her. I am thankful for whoever told me of that. So,, look it up, and see if the info will help you also.  I don't have this, but I have cared for my sister all her life. SHe is so much a part of me, that it is like I have it also. The difference is, she will leave me because of this. And I will stay. SHe is determined terminal. And it is coming soon. But, because of this site, I am now as OK with it as I could ever be. I will write her story soon. And I hope it will open a door for everyone who has it. I actually have a person wanting to publish it. I WANT this MM known. I WANT it out there!!!!!!!!! And I will make sure it is. It will take me some time, as she is my main "project" for now. But I WILL get it out there. For all of the children, mothers, fathers, etc. who are living with it. The world needs to know about this. I will let you all know when and where it will come out. Then,, they will be looking for all you, to hear your stories also. As the main thing I will put out there is this site. Hang in there all. Life is a WONDERFUL thing, no matter how we have to live it. Sincerely and Lovingly    MJS

HEY  me again,,,,MJS. Sorry, I miss spelled the words I wanted you to really get... It is "Complex Partial Seizures"      again Sorry

MJS,

    thank you for sharing your sister's story.  Tonite, i'll cry for her instead of me.  Your love is amazing.  I'll say a prayer tonite especially for her and peace for you.  Thanks so much.  Look forward to seeing more posts from you.  

Many hugs,

Lee