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 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

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)  .

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 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.

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
Moira

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

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 .

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

That is all my
you all
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

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