hey all... i haven't read too much on this site yet, i just (today) left hospital after a bit of an emotional rollercoaster of a week......
checked in last monday with several nasty symptoms (about 8 strokes in total i later found out, 2 being fairly major) and under-went a lot of nasty tests (LP and the cerebral angiogram being the worst by far!!) and then finding out i have this crazy disease!! being 23 and or english/irish background puts me in the minority it looks......
anyway i am seeing a neuro-surgeon at the end of this week to discuss surgery options..... so far we've been through the option of bypass surgery.... as well as a muscle transplant onto the brain?
anyway i guess i'm just registering my interest here and preparing for a lot of research, i currently know pretty much nothing about the condition.

i've been on hepron for a week.. and am now on asprin and plavix (spelling?) while awaiting surgery (will be off these for at least 7-10 days before the procedure).... am currently still experiencing symptoms (lack of motor skills/coordination in right limbs and often forget things/lose track of though etc..) is this normal?

i dunno.... in general just wanting contact! i'll start some reading now.. hehe...

edit: oh and pathetic as it sounds.... how much of my hair will i have to lose? i have a huge head of dreadlocks, halfway down my back that i've been growing for years.. gulp.......

Hi Emily,

Welcome to our family!  I'm sorry that circumstances led you here, but you've come to the right place for information and a wonderful support group.  

I have an 18 year old daughter who was diagnosed and had her surgeries when she was 17.  We were fortunate to land in the hands of one of the premier MM specialists in the U.S., Dr. Gary Steinberg at Stanford.    Though we were scared to death, knowing that Tara was in the hands of an expert was indescribably comforting to us.  She is now 16 months post-op, and doing very well.

I know you're reading everything you can which is good, because the more you know, the better off you'll be.  One of the most important things to do for yourself is to find a neurosurgeon with lots of MM experience.  There are many great doctors out there, but the ones who see MM the disease on a DAILY basis are few and far between.  

A couple of other things to remember:  1) Each patient is different.  There is a wide range of experiences you'll read about on this board, but each patient has had a different starting place.  Outcomes are dependent on many factors (has there been a debilitating stroke or hemorrhage prior to surgery, expertise and knowledge of the medical staff, other contributing medical factors, etc.)  2) MM is a progressive disease.  You'll definitely want to move forward with educating yourself (sounds like you're doing that!) and getting appropriate treatment as soon as it is feasible.

You asked about hair.  There is a range of how this is done also, and it seems to differ from institution to institution.  (Tara had waist-length hair and was terrified about this as well!)  Speaking for Stanford patients, the hair loss is minimal, and really not even noticeable unless you're looking for it.  The section of hair Tara lost was about 4 1/2 inches long by about 1 1/2 inches wide on each side of her head.  Once she was able to wash her hair, the hair above the shaved part completely covered what was gone.

Please feel free to continue asking questions, as you'll have an instant family here.  People are glad to share their experiences, offer their opinions and provide whatever support you may need.  As scary as it is to hear the words, having MM definitely isn't a death sentence.  With proper treatment, you should have many more decades of good-quality life!  We'll be here for you whenever you need us!

Warmly,
Jill      

Hi Emily,

Welcome to the moyamoya family.

I too am sorry you are having difficulties but you have come to the right place to seek factual information as well as individual stories about experiences with strokes, surgeries and treatments related to moyamoya.

My brother Kevin (Cubbie) has moyamoya and had a significant stroke 4 years prior to being diagnosed with moyamoya.  He too had surgery in the U.S at Stanford University by Dr. Gary Steinberg, who is an expert in moyamoya in the U.S., just this past May.  Kevin had two back to back STA-MCA (direct bypasses in the brain). There are different surgery techniques and also some on this site have had surgery on one side only and others have had surgery on both sides. Folks and this site are of all ages and from all around the world.  As for your hair- don't worry about it.  At least in the U.S, they don't cut all your hair off when having brain bypass surgery.  They only cut your hair where the incision will be. For someone like you who has been growing your hair for a long time, that is probably a relief.

Emily, feel free to ask questions. Chances are, someone on the site has experienced what you are experiencing and we are all here to support you. You can come to the site and simply vent frustration.  God knows, we've all been there with this disease.

Again, Welcome. Please let us know how you are doing and please ask questions.

Hugs,

Lore and Kevin (Cubbie)    

Hi Emily,
Welcome to the site - It is AWESOME!!
I cannot add anything that the others haven't already covered but just wanted you to know that I am in Perth Western Australia, and if you need to ask any questions please feel free to email me - I keep in touch with several others in Australia - Helene (Patch) has just found the website and will be going through surgery shortly, and there is also Emma in Victoria that I keep in contact with
Moira

Emily:

I also am so sorry to hear you are going through all this. But, you did come to the right place! I am 24 and was diagnosed with MM when I was 8. I had 2 bypass surgeries and have led a normal life since then!

I have a new baby and work full time and am married. Please just realize you need to take care of your self, have the surgeries and then move on. This is NOT a death sentence!!! You are very lucky that the doctors diagnosed you properly so quickly.

Please feel free to email me or ask me any questions you have!

Sara

Hi Emily,

Welcome to the "family"...  You will find a wide range of people here from all over the globe, who either have this disease or know someone who does - be it their child, a spouse, etc...

The people here are warm, encouraging and extremely knowledgabl...  knowledgibl...  knowlegabl... SMART and will help you in many different avenues.

There's *TONS* of information here, so sit back, put on an extra pot of coffee and dive in.   :)

I'm sorry that you had to find us in this way, but we are still very glad that you found us!

-= Dewski =-

Hi Emily,

Welcome to the "Family".  I for one, cannot say enough about this website   [smiley=thumb.gif].  It has helped answer some of the questions I had and given me tremendous support.  It sure makes me feel better that I'm not alone.  

Aloha,
Jan [smiley=hug.gif]

Hi Emily,

Welcome to the "Family".  I for one, cannot say enough about this website   [smiley=thumb.gif].  It has helped answer some of the questions I had and given me tremendous support.  It sure makes me feel better that I'm not alone.  

Aloha,
Jan [smiley=hug.gif]

Hi Emily,

My daughter's name is Emily too, and she is 23.....Good name & good age, hahaha.

Any way I am the mom and I had the surgery on the left side 5 months ago. I had the surgery in June and went back to work in September and doing good.

I had my surgery at Stanford with Dr. Steinberg and YES
it was the best thing I did.  My symptons were similar to yours and I took all the medications you did too. BTW, I also have long hair and  everyone is surprised because it looks like I never had the surgery. I have to show my friends and collegues the pictures to show them my insicion etc.

Please don't worry, you have many friends on this board that's been through it. We all survived and are doing better than before. I know you will be on the board after your surgery "all good" and ready to conquer the world!

Keep us posted Emily and I am so happy that you are getting the treatment.

LOL,
itsme

Emily

MY name is michelle and I was just diagnosed nov.4, 05
I know about the emotional rollercoster you went through cause I'm going through It now. I'm sorry to hear that you have had eight strokes and are on the fast track to surgery. I'll pray for the both of us and I hope you and I can talk soon. :)
Michelle

hey michelle..... wow sorry to hear you got diagnosed.... well actually glad to hear you got diagnosed and you can now know what to do but sad to hear it's mm!
and so recently too, luckily you found this place - it's been a godsend! i've asked a million questions (as you'll notice from my multiple posts!) and pretty much all of them have been answered here... been fantastic...

as for the hair.... well the dreads make it exceptionally hard for them to get at my scalp, i'd have to cut off well over a third of them just to be able to get at the required area.... and seeing as i'll need another op on the right [hopefully soon] and maybe more... i've decided to go-the-whole-hog and cut them off and go baldie for a bit :)
not exactly something i'd planned to do any time in the near future but oh well... it's supposed to be a liberating experience! and if all else fails and i'm totally not into the short-hair business then i'll bring out the needle and thread and re-attach them...

one week to go!