I know it's been a relatively short time since my STA/MCA surgeries (10 and 9 weeks) but for those who have had some speech problems after the surgery on the left side - how long before it all cleared up? When I'm tired or stressed I find that my speech slows down and I occasionally slur a bit - I really hate this  :-[  I doubt I could win a verbal argument with anyone!
I also find when I type I often write their for there and your for you're and such - didn't used to do this.
Everything else is going great! I'm back to work in the shop full-time. Fortunately (or not), there aren't many customers this time of the year so I'm not stressing. I've been doing an hour of water aerobics and swimming laps nearly every day for the last couple of weeks. I'm adding a lap a day - now up to 10  :) My goal is a half mile, 17 1/2 laps. When I swim, Dr. Steinberg is my inspiration. I think of his self-discipline and dedication. He can't just not show up for surgery because he's having a bad hair day  ;). So I go to the pool, practice my guitar every day (just started lessons), today signed up to learn how to knit socks, and am sewing scrubs hats during the evening (instead of TV) for the women moyamoya patients at Stanford. I was pretty self-conscious of my scars when out in public - esepecially during the week between surgeries. Finished the first prototype last night. I have four bolts of bright, cheery fabrics and had a sewing lable made that says
Made with love
For a moyamoya sister
From a moyamoya sister
I might later do another for men that says
Brain rebuilt by
Dr. Gary K. Steinberg
From a moyamoya sister
or maybe
Brain remodel by...
Any ideas for the message would be greatly appreciated. It can be up to three lines with 24 characters per line max.

I've had my surgeries almost two years ago and I'm still slurring.  I have a bad habit of speaking tooooo fast and my mouth goes faster than my brain.  I usually try to catch myself when I start to slur, so don't feel too bad.  It will take some time.  I'm still working with my speech.  I know I have to be patient.  I'm sorry if it's not what you wanted to hear, but I had to say my piece.   ;)

Aloha,
Jan

I had my surgeries over 6 years ago and my speech is fine until I am stressed then i stumble over my words and don't say the right thing. I still cannot remember the right words to say sometimes, but I have learnt that I would rather be alive than to be as eloquent as I once was. It isn't important any more.
You may get your full speech repertoire back or you may not, but either way you will learn to adjust and live with how you are now. Congratulations on all the things that you are doing to positively enforce yourself.
I myself have just completed my extreme poledancing course!! I have done beginners, intermediate, advanced and now extreme and am waiting for the follow on course called insane!!
The key is to get out there and live - you will never be the same again and I don't mean that in a negative way. Even if you get to be exactly the same as you were before surgery, you have survived brain surgery and that in itself changes your whole outlook to life.
Moira

I lost the ability to speak after my second surgery, among other things (typing, writing...).  I still find I slur words sometimes - like you said - when I'm really tired.  It took a good six months for me to feel comfortable in a regular conversation.  I had speech therapy though.  I also found it was helpful to actually be in a converstation with someone to exercise your brain - the more you use it, the easier it will get.  Also, doing crossword puzzles, word seeks, and reading helped me....word recognition, etc.

-Shari

It has beed 3 yreas post surgey for me. Stress/oversleepy=speach slurs. I also have a notecble limp when stressed or over tiered. i read a book aloud and that helps keep me talking.

Thank you, thank you, thank you, Jan, Moira, Shari and Becky for sharing your experiences with me. Somehow it helps to know that I'm not the only one having this trouble. My family says they notice it very seldom - but I think maybe they're just being kind or maybe they appreciate being able to get a word in once in awhile now  ;).
 
Jan, even if it's not what I wanted to hear, I'd rather know the truth. I can live the the fact that it may not get better. Of course I hoped to hear that it would be back to normal within 6 months.

Moira, extreme pole dancing?!!! Wow, that takes a huge amount of energy and flexability. I have a lot a weight to lose before I even dream of trying something like that. Good for you! I never was all that eloquent a speaker, so no great loss for me there. And you are so right about being different after surgery. I am doing things that I kept putting off and loving and enjoyig my life more than ever before. It helps tremendously to have my energy levels restored and everybody likes that I don't snap and overreact to little problems like I was during the six months before surgery. I was not at all happy. Now, when the alarm goes off at 6:30, I roll out of bed and can't wait to start my day (OK - truthfully I do hit the snooze at least once)  [smiley=snore.gif].

Shari, I always heard that work was good therapy. I work nearly every day in my retail shop where I get to talk to people all day long. If, I'm still having trouble come May, I think I will try speech therapy. If that doesn't fix it, then that will be OK too.

Becky, were the limp and speech problems a consequence of the surgery or did you have strokes beforehnd that may have caused them? I had three very small strokes before the surgeries and had no speech problems, though my left hand and lower arm are a little bit weaker. And I didn't have any trouble after the surgery on the right side; just after the left side.

All of your words again reinforce my belief that moymoya survivors are tremendously caring, strong and brave people. Thanks, I feel better.
Kim

I soooo want to thank you for coming up with the idea of making "special" hats for us gals! [smiley=hug.gif]  

I could use one soon, as I am schdl'd to have my 1st surgery on 2/5 & 2nd on 2/12.. my entire family is shocked that I am actually looking forward to all of this...  

everyday I have TIA's.. Dr Steinberg will be doing the surgery.. we are flying in from North of Chicago area on 1/29 so we can drive to the ocean.. hey! gotta have some kinda fun while there rite?!   [smiley=cool2.gif]

I was hoping alot of the symptoms I have now with the TIA's would go away but from the look of things here on this site, they may NOT go away..  my speech is getting more slurred when I have them & now my feet shuffle one way, when my brain says to go forward!  has that happened to anyone else?

Does the hospital give us some kind of cover up for our head when we leave there?  Gee whiz Beaver, I sure hope so !  [smiley=crackup.gif]

I had a stroke prior to my diagnose of MM. It has improved drasticly since the surgery. I used to have migeains every day but now I am luck if I get one once a mounth.

Hi,
It's been 8 months since my surgeries, I don't slur my speech, but sometimes the words don't come, which is very frustrating to me...I have daily headaches that vary in intesity(I think I have tried every headache med, nothing works except when they get really bad is to sleep it off) fatigue and some memory problems, oh and the jumping feeling in my legs...my general doctor says what ever you get back in a year is probably gonna be it....but don't be discouraged...everyone is different....
It is very thoughtful of you to make the scrub hats, I left the hospital bald as a cue ball...LOL...I had my niece bring me a bandana that I had bought, but I would have loved to have gotten one from the hospital...

Tia

Its really great of you to take the initiative to make these hats but I must confess I am confused about why in the USA they shave your whole head? I had a wedge of hair removed from each side, so little in fact that you would not know that I had just had brain surgery. I have long hair and I  never even had to contemplate having it removed. The other thing that confuses me is my staples were removed a couple of days after surgery so I went home without them and no problems at all in regard to the scar afterwards, but from some of the posts I have read in the past, the staples in America are left in for a couple of weeks after surgery. You guys must have a more radical way of dealing with brain surgery over your way than here down under [smiley=laugh.gif]
Moira

Hi Moira,
I think I am the exception to the head shaving thing, I did ask before the surgery and I was told they would probably shave a strip on both sides, imagine my surprize when the badages came off.... :o
The nurse said it was because they had trouble finding the veins...so they just shaved it all in case they had to do surgery elswhere...

I to had looooong hair, all the way to my butt... ;;D
but when I had my hemmorage, they had to drill a burr hole to release the pressure, I guess I told them to cut the rest off, but I don't remember  [smiley=huh.gif]
I was thinking of cutting my hair anyway, but I kept chickening out...

I didn't have staples, I had regular stitches that I had to have taken out probably a week or so later, I was only in the hopsital for 3 days, to soon to take the stitches out...

Tia

Hi there:
I am actually here at Stanford for my 6 month follow up and everyone is glad to see my speech is fully regained.

I lost my speech the day after my second surgery on the left side (surgery Tues, speech and swallow problems Wed).  Then two days later it came back (Sat), the right before I was released on Sunday I started having problems again.  My speech came and went (usually at inopportune times), but my mom insists there were several expletives I used on the freeway that I had absolutely no trouble shouting  :-[, what can I say, mind over matter!

Speech was for the most part fully regained in about 2 weeks, but when tired or dehydrated, I still to this day stumble over words, get thick tongue or forget the word I am looking for.  I just turned 40 so all of my friends remind me that happens to them all of the time too, but i think they are trying to be nice ;-).

Everything else is back to normal.  I am running in 5k and 10k and training for a triathlon, so keep up the swimming, it is great exercise!

As far as the hats go, I think it is a great idea.  I would wear loose baseball caps, but quite honestly, the scars went hand in hand with the black eye and the bruising, which was always a conversation starter allowing me to explain my soon to be ex husband did not give those to me, Dr Steinberg did! ;-)  I am not self conscious of my scars, to me they are a badge of honor and I have educated many people about moya moya with them.  But that is a personal preference.  I think anything you can do to help women feel good about themselves as they head out in public is a very commendable effort.

Good luck with the speech...and if all else fails, try singing what you are trying to say (Remember the stutterer in A Fish Called Wanda?)

Take care
Sandi

Hey Kim:

I have to say that I'm both encouraged and scared at the same time reading the posts about experiencing and then recovering from being tongue-tied and getting bad haircuts.  

The encouraged part of me is really anxious to get this whole thing behind me and start swimming laps, doing water aerobics, or running in 5K's.  It's amazing to me that after such a short time post-op, there are people like you and the others who are moving forward and enjoying a better quality in their lives.  

I'm scared because I don't want to have scars on my head or lose my hair anymore than the next person, but in the big picture scars heal and hair grows back.  That stuff is temporary.  The verbal issues might just mean that I'm going to have to think before I speak!! What a novel idea!!!  My family will be thrilled.  ;)

Sheila

I have my tongue tie and MM left me with some other isue but what the heck, I'm alive and that is matter, to those who is get on with their live and healthy and strong I really happy and congrat and admired, to those who on the same boat with me I'm happy and congrat and admired also because you went bravely through major brain surgery or surgeries and then trying to live our normal(moyamoya) life, oh boy, that is alot, how many peoples have a change to do that [smiley=laugh.gif] [smiley=laugh.gif] [smiley=laugh.gif].

Now, to my knowdlege, this site DJ kindly created for us so we supported each other to deal with this deadly diease, so please no judging.  Every surgeon have their own way to do surgy( to what they studies) and try their best to save life.  Through this site, it many of God send doctors from all over the world succeses with their surgeries.  I'm very proud of my doctor-Doctor Tamargo at Johns Hopkins Hos.- who is shave half of my head each time I'm in surgery to minimize the change of get infection.  When I got home, I shave my whole head, and gladly to be bald to be alive.  Hair will grow back, my hair grow thicker and prettyer [smiley=thumbsup.gif]

That is all my [smiley=twocents.gif]
[smiley=hug.gif] you all
Kieu

Kim
I wish you near by because I can use a hat ( I still wearing it for winter time to keep my head warm ) or you can show me how to making it.  What the great idea you have.
Kieu

Hey Susan!
I'll be sure to get the first batch of scrubs hats to Jill in time for your surgery in Stanford. Nothing like a deadline to get me moving  ;). I wasn't offered any kind of head covering when I left the hospital. My first surgery was on Halloween, so I felt a bit like Dr. Frankenstein's monster  ::). I'm waiting for the sewing labels to get here. Soon as they arrive I'll stitch them to the hats and send them off to Stanford. I haven't sewn since I made toddler clothes for my son - he's now 36! This has been quite a relearning experience for me - good exercise for those brain cells!

My prayers and good wishes will be with you during your surgeries. Say hi to my freind Sheila when you get there. She'll be sharing the adventure with you.
This may sound trite, but try not to worry. The care you'll be receiving is the best in the country.

Oh, by the way, here's a travel tip. Be sure to visit Half Moon Bay on the coast. It's a 20 mintue drive from Stanford and really a neat little town. There's a funky little seafood restaurant on the left side just before the road intersects hwy 101. The service is great, and the fish is fresh, tasty and reasonably priced. We drove south to Pidgeon Point lighthouse and talked with a wonderful doscent there. Watching those waves crash against the shore and the sea lions play in the surf truly soothes the soul.
Good thoughts coming at you,
Kim

Sandi -
You make me smile ;). I'm sure my singing would get a lot more attention than my speech deficit - my audience would surely run for the hills!  ;)
You're doing a triathalon?! - WOW! That's fantastic!
I used to always put myself last (which means I seldom ever got around to taking care of myself at all). It feels good to do something for me first thing every morning - it makes the whole day feel brighter. Too bad it took brain surgery to wake me up  ::).
Kim

Hi Sandi, WOW!  I'm glad to hear you are feeling so good that you can train for a triathalon!  How is your testing going?  Call me when you get back so we can get together again, and compare notes.  

I'm nearly 10 months postop and still slur a word or two here and there, but not sure I can blame it on MM...sometimes my tongue just gets lazy.  HA  

Kimberly