Emily -

Am pretty new to the MM - My daughter Kate had by-lateral vascular by-pass surgery in Sept., but I do know some of what you are going through.  She felt like crap a lot of the time, too.  No one could diagnose her and kept telling her she was "stressed."  She had migraine headaches and tingling and no doctor even gave her anything stronger than Excedrine for the headaches.  She also was exhausted all the time.  When she came home from school, she would sleep for 10--12 hours at a time.  And she took naps for the last 4-6 months before her surgery, something she hadn't done for years!!  This apparently isn't uncommon, as your blood is working so hard to pump and feed your brain.  

Hopefully, after your surgery, you wll begin to feel much better and have a lot more energy.  I will be praying for you that this happens.  Please keep in touch and let us know how things are going.

Hugs,

Cass in Dallas, Texas  

Hi Emily,

Most every moyamoya victim and their caregiver can relate to everything you are saying. You are not alone on this site.

"Return to normal life" I believe is whatever you can do within your own constraints.  If that means take a nap, that means take a nap because that is normal for you at this time. 

Lisa hit it on the head when she mentioned "sensory overload" in crowded and nosiy  places.  Somtimes even the type of lighting in a store or club can have an effect on you.

My brother Kevin (Cubbie) has MM and had a significant stroke about 4 years ago and went misdiagnosed and undiagnosed for 4 years. He had back to back double direct bypasses (STA-MCA) this May.  It is amazing how different and how much better he is after the surgeries. Like, Lisa said, it will get better after the surgery and in the meantime you need to take care of yourself.

Kevin experienced alot of what you are mentioning. It's like a roller coaster ride.  Some days you may look, act and feel very normal and the very next day you can be just the opposite.  When you think about the disease and what it does (occludes the brain) you lose oxygen from the lack of bloodflow. The bodies first instinct is to survive so it is working overtime to supply blood and oxygen.  It's no wonder nor is it a mystery that you feel like "crap".

You ask your "heap" of questions and you will get responses from folks on the board who can relate exactly to what you are feeling and going through. We are here to support you and assist you in understanding things that go on with moyamoya and hopefully help to ease some of the anxiety and frustration that goes along with this disease.

For Lisa, "Whinge" is British and means "to complain or protest, especially in an annoying or persistent manner."

Whinge all you want Emily we're listening. lol

Take care of yourself and let us know how you are doing.

Hugs,

Lore 

Emily,
Good luck with your surgery! As far as reutrning back to the "normal life" ... You will never have it fully back. You have experenced and Survived!! something that most people can never exeperence (execpt those who are on this sight) You will have good days and Bad days but try to get to know your limits. My husband in in an heay metal band so my weekends were spent in bars and clubs alot. But now I just have to watch myself and know when I am getting close to the breaking point and need to go home. Drinking is also a precaution you need to rediscover your limits. What you were before may not ba what you are now.

I know exactly what you are going through I look normal, I feel "normal" most of the time, excep I now have Two part lines and a soft spot to watch out for.  it has been a year after my surgery and I am sick and tirerd of explaining over and over This is my disorder, this is my surgery... Blah blah enough all ready!
I just direct them to this sight and say "if you want to realy know more then go here and you will find out!"

Sorry for ranbing on there. The best of luck to you! I'll be praying for you.
Becky

Emily -

Hope you are having a pretty good day today.  You are on my heart.

I have just learned more new and valuable info from you all.  Kate experienced the "sensory overload" in crowded, noisy places.  She also freaked out at concerts with bright lights, smoke effects, etc.  She was diagnosed with extreme anxiety disorder and obsessive compulsive disorder and put on Lexapro for depression and anxiety, but this only helped a little.  She really hasn't had this problem since her surgery, but is leary of going anywhere that might cause her anxiety, especially to a club to hear her brother's band (he is a drummer in a punk rock band.)  I am forwarding your info to her in OK.  This is SO helpful!!  Thanks all of you all.

Cass

Lore wrote on Oct 28^th, 2005 at 7:50am:


Thank you Lore!  This is my new favorite word!     Sounds a lot better than "whine"  LOL

Lisa

Hi Emily,
Just adding my 2 cents worth!
I want to just say that a lot of people will probably disagree with me on this one, but my life is even more active and fuller than it was before I was diagnosed!
I tended to stumble through life before, taking things forgranted and winging it, but now because of my MM experience I have thrown myself into doing things I probably would have been too cautious to do.
I have since had another baby and am now hitting the gym 5 days a week 2 hours a day and ABSOLUTELY loving life; my husband also treated me to a boob job a couple of months ago as his opinion is to live each day as it comes. It isn't necessarily the MM that is going to get you - we are all fallible,and not just because we have MM.
I believe you have to look at the surgery as a new start. As Lore goes through great pains to always point out, there is no cure  but I don't believe that should stop you living the kind of life that you want to, and surgery will allow you to do this. it is like everything -KNOW YOUR LIMITS. I have everything to live for - 2 beautiful children and a husband whose love has brought me through this.
I really hate to trivialise this but life is what you make it.
Everyone please don't judge me for being self indulgent
I think that when you go through a life and death situation that it makes you want to get the best out of every situation. I am sorry to read posts where people are having a hard time of it and it really makes me realise how lucky I was with all of this.
Kindest regards Moira

Hi Shan
THANK YOU for your support. ;
I get down on all the negativity that surrounds us when we have a condition like we have. One could walk out and be hit by a bus tomorrow and it would have nothing to do with MM. I believe we pass this way but once and have to make the most out of every situation as they present themselves. I remember I used to think I shouldn't be doing this or that because of MM, and when I fell pregnant with Chad I was struck with terror that I was going to endanger my life in continuing with the pregnancy. I phoned my neurosurgeon directly on his mobile and told him of my fears and then asked his opinion and he said " Well Moira, there's only one thing I can say to you - Congratulations!!" and it all went smoothly and I was closely monitored by my OBGYN and neurologist and neurosurgeon, but I suppose what I am trying to say is if I had thought about this and been too cautious, I would never have had Chad and he is a true little miracle!! I also don't want to get to the end of my life and say I wish I'd done that! So Thanks once again for your support
As always
Moira

!!!!!
thanks heaps everyone for your replies! i didn't really know what i was trying to achieve with that thread but i think i got it! definitely feel less alone knowing (even though it sux) that there's others out there that feel the same..

cass you said something that made sense - kate took naps for the last 4-6 months before her surgery, something she hadn't done for years!!  This apparently isn't uncommon, as your blood is working so hard to pump and feed your brain.   
i guess i find it hard to get my head around how much work the body has to do to keep everything running fairly smoothly. although i am noticing more and more things that i can't do.... like add and subtract! and just general logic with numbers...... i'm an engineer! haha... oh well, i didn't enjoy it anyway....

i guess obviously, 'who knows' how i'll feel after my surgery, everyone seems to come out of it differently so there's no point in worrying about that, just going into it as prepared as i can.

my biggest "whinge"  though is that i guess i considered myself to have a pretty darn good outlook on life before all this happened, i'm not really sitting here thinking 'wow i'm lucky to be alive' - because i already knew that! life's friggin fantasic... but oh well... maybe some of the people around me need to know that life's too short and this will help them ?? who knows...

once again though, THANKS heaps for everyone's regular replies and the huge amount of support (so impressed with people who've had their surgeries sooo long ago and still check back here so often, it's fantastic!
cheers!
8) ;

Emily -

So good to hear from you again.  I know everyone is a bit different with mm, but I hope your surgery goes splendidly and you begin to feel much better after it.  Kate has always enjoyed math and even took an advanced accounting class this past summer just before she was diagnosed and treated.  She had a terrible time!!  Don't know if it was specifically with "numbers" but she just couldn't consentrate and/or perform the equations.  Needless to say, once she was dianosed with something other than "stress and anxiety" and than had surgery, she is SO much better!!  By the way, she went to her first crowded concert night before last and really enjoyed it.

You are on my heart. 

Plear keep in touch and let us know when your surgery will be.

Hugs, 

Cass

i was going to start another thread to ask this question but i think cass you might have answered it? after kate's surgery was she able to work out the maths again?

has anyone else lost the ability to do something before there surgery, from a stroke or whatever, and then re-gained that ability once their bloodflow was restored?

admitedly i'm not looking at going back to engineering, i never enjoyed it anyway and have decided to do something "nice", i'm currently working in the music industry which i thought was my dream, but even that has too much negativity and i'm totally over having negativity in my life (so maybe i have gained something from this!  ).... but i'm just curious if this restoration of blood flow will bring thing back...
am kinda excited actually as pretty much the whole left side of my brain is so seriously starved of oxygen and blood and then it's going to all of a sudden have all this blood flow come back, and who knows how long it's been.... is it going to be a sudden big rush? maybe all of a sudden i'll be like totally creative and coordinated and saving the world and all hehe..

anyway cheers once again guys you all rock 

  Just for reference, I'm Emily's friend (also called Em!) in Australia..
----------------

I have to say, I agree with Emily.. this site has been an incredible help and it's great to see people sharing their experiences, even long after their surgeries.  I guess people feel it's their way to give something back and it's so inspiring to see!  So congrats to all of you, you're doing a fabulous job!!

I'm incredibly lucky to be around Emily at the moment.. whatever she is going through, she's got a fantastic attitude, and she's definitely an absolute inspiration to be around.  It's not all easy and of course there are times when it puts strain on her, but Emily looks to every situation to pull something positive out of it.

It's tough on everyone.. one minute life is pretty fantastic and you're loving every minute, and the next second there's a strange disease you'd never heard of and everyone around you is speaking like a neurologist.  It's pretty trippy, and although everyone says it makes you value your life that much more... what if you already did make the most of every second?!  Emily has always thrown herself headlong into every possible opportunity since the day I met her, and she's always been a fantastic person, caring for other people.  So we're sat here wondering where she's meant to step up to now.  I'm convinced that everything that happens in life has a lesson for us all about ourselves, so we're just holding on to find out what is going to be revealed about Emily

It is hard for me sometimes.. Emily is my best friend and yet we live in different cities, 2000kms apart.  Until I'm able to come down to Melbourne full time, there will always be times when I'm a long way away.  I'm in Melbourne at the moment and I was thinking last night how much happier and at ease I am to be able to see her every day and know how she is coping with it.

At the very least, I think Emily's MoyaMoya diagnosis has helped us all to put a few things in perspective: I'd got to a stage when so much meaningless worry was filling up my mind and I was concerning myself with things which really don't matter at all to me.  As soon as we moved into the MM phase, it cleared it all right out of there!  Suddenly I'm able to see things so much clearer.. I for one value other people so much more because I can see much more clearly how little I want to clutter my life up with wasted time.

I guess as with everything, it's only in hindsight that we'll be able to see what we gain from the situation.  For the mean time, we've got to just sit tight and live every moment to the best of our ability.

keep smiling

Welcome Em to the MoyaMoya family.

We are here to support MMers  and their friends, families and/or caregivers. Our hope is to help ease anxiety and frustration and provide factual information about the disease and information on surgeons experienced in dealing with MoyaMoya. We hope to provide a sense of comfort as well.

It makes coping so much easier when one can talk to folks who know exactly what the person is feeling and experiencing. It is apparent, from your post, that Emily has a great support system and a marvelous friend. You are a wonderful and caring friend to Emily. She is fortunate to have you and especially now for support.

It is also apparent to me that Emily is very upbeat and positive. I feel confident Emily will do fine with surgery and recovery.

Often, when we are diagnosed with a chronic or rare condition, I believe it is only natural that we oscillate through all kinds of emotions. It sometimes "wakes us up" to what is and is not important and reminds us that life is precious and to live each day to the fullest.  It sounds to me like Emily lives each day to the fullest. Go Emily!

This site is absolutely fantastic with caring and compasionate people all willing to help each other anyway they can.

Again, welcome and keep in touch. Also, ask any questions and we will respond.

Em, you keep smiling too 

Hugs,

Lore