My mom is 52yrs old. She was diagnosed earlier this year. She had several TIA's. Her motorskills have improved since.  A neurosurgeon said her moyamoya was too advanced for stent surgery.  She had a SPECT scan done in Oct.  and it showed reduced blool flow in the frontal lobes. We are going to see another  neurosurgeon on Nov. 4th Tues. (Dr. James E. Rose in Houston TX). He  does bypass surgery. Does any one of you have experience or any advice for my mom and my family? My mom is scared she wont be able to have surgery and scared she will have to have surgery!
                                THank you, AMy Beaumont TX

AK - You've come to the right place for support and information for your mom.  This is a great site to read and hear about other people's stories.  The advise I've received by many people is to seek several opinions.  There are different surgeries available.  I have an appointment with Dr. Scott in Boston in two weeks to discuss my options.  Dr. Scott in Boston as well as Dr. Steinberg in California are the two leading surgeons for moyamoya.  From what I've read on this site, your mom can actually send her films and test results to Dr. Steinberg for an opinion.  Both Dr. Scott and Dr. Steinberg are available by e-mail.  Good luck to you and your mom! - Shari

my husband was 59 when diagnosed, we are told being older andmale is atypical.  he had a major stroke in Feb.  another lighter one in June.  They finally operated JUly 30, '03.  He seems to be recovering fine with no more loses.  He has aphasia, and other loses, no motor skills lost, but has a right field cut with his vision  (right side of vision in each eye is gone)  I would say go for the surgery as soon as possible.  We did not consult with anyone other than University of Iowa hospital.  They have had some experience.  Good luck.  

Good Luck on Tuesday ak!

I hope you get some answers so your Mom will feel more comfortable with her options. I agree with Shari. After you find out this doctors opinion, learn all you can about it and get another opinion from a moyamoya expert. My familly had a wonderful doctor, Dr. Steinberg at Stanford. He lectures all over the country on moyamoya. He's the best! All the info you'll need to contact him or Dr. Scott, are right here at the top "Links".  It couldn't hurt and the more you know, the more your Mom will feel confident with her decision, what ever that may be.  [smiley=twocents.gif] There are so many success stories. You all are in my prayers.

Please keep us posted.

God bless,
Mar

Wow! What quick responses. Thank you all for the replies to my message. I cannot wait to show my mother all of your responses. I hope by communicating with others that my mother will not feel alone with this disease.  Dr. Steinberg seems to be very experienced with moyamoya. Thank you D.J. for making a way for all to communicate.

                                Thank you, A.K. :)

You are more than welcome AK!  It's my pleasure to be able to help, trust me!  I hope you and your mother can find some comfort in knowing there are others out there who have been through the same thing!

If either of you have any questions at all... please don't hesitate to let us know!

Take care!
DJ

We are back from seeing a neurosurgeon today. He said that my mother (52yrs) needs to have bypass surgery. He said that he will do both the STA-MCA and the EmS bypass. He will do the right side first. Her right internal carotid is 90-95% narrowed and the left is about 70%. She  is getting a good cardiovascular workover first for preoperative clearance. She is scared.
I have been doing research and have become fairly knowledgable about options. I am trying to get her to communicate directly with other moyamoya survivors. Can you please tell me how long it took you to recover and are you relieved you had the procedure?
Thank you so much!                        ak

Hi again ak,

Thank you for the update on you mother.  I'm sorry to hear she needs surgery, but I'm very happy that they were able to correctly diagnose her!

I know you mom is scared.  Trust me, I know... I've been there.   :-/

Being through two surgeries, I can honestly tell you and your mom...  for me, it wasn't bad at all.  Read "My Story" and look at "My Pictures" linked above.  I was up running around the hospital within 24 hours of each of my surgeries.  I even posted a message to the guest book on this site from my ICU bed within 12 hours after my second surgery!   ;;D

If you or your mom would like to talk with me more about my experience, please don't hesitate to send me an email, or a PM through this message board.

Take care and HANG IN THERE!
DJ

I just checked in after a couple of weeks and saw the message about your Mom.  I will turn 60 in a couple of weeks (UGH :( but would like you to know that I was diagnosed with MM at age 58.  I had many TIA's and one small stroke.  Dec. 1999 Dr. Steinberg did one by pass on my left side,  Jan 8th did the other side.  I am now fully recovered and taking flying lessons.  


The surgery was not painful at all. After the first one I was speaking clearly and better than I had in a long time.  Tell you mother she would be in wonderful hands with Dr. Steinberg.  The nurses are also very caring especially Terressa.  She did all the planning and set up.

If your mother would like to talk to me please email me at JonNJeraol.com and I will give you my phone number.  Will be glad to answer any questions.

All my prayers are with you both.
Jeri

AK,

Not sure if your mother has already had the surgery, but I'll reply anyway.  My father is 66, he had a stoke at age 25 (very rare) and was diagnosed with MM three years ago at age 63 after experiencing some weakness on one side.  A month ago he had a cranial hemorrhage.  Dr. Jim Rose at The Methodist Hospital in Houston preformed a STA bypass.  My family was extremely nervous about the surgery because of his age and the severity of the MM.  The surgery went very well, but my father is not back to 100%, yet.  He goes for physical and speech therapy three times a week.  He has trouble finding his words and his walking is still a little shaky.  All of his side effects could have been caused by a post-opt seizure.  My father has three episodes of TIAs the week before the surgery.  Now the good news, no TIAs or seizures since, speech and physical activity improving.  At his age, this surgery is a quality of life decision.  Unfortunately with MM or people prone to stokes, these side affects are also possible.  I would be more than happy to discuss the surgery, the doctor, the hospital with you.  We choose to go with Dr. Rose verses going to Sanford or Boston because my father had good relationship and trust in Dr. Rose, Dr. Lopez, Dr. Grossman.  Also, I think my father or mother would not have been up to a two to three week stay out of town.  I am thrilled he is still with us today!  DJ – thank you again for your countless hours you have put in on this site. It is a true service for all of us in need of information and support.

ps- my father saw Dr. Rose this week, he wants to do the other side in a few months.  Dad wants to "get back on his feet" before the next one.

I wish your mother and your family the best.

My daughter Mandy is 20 and had STA-MCA in Feb. and March shedidn't have alot of pain and recovery was quick she had hers at Stanford by DR. Steinberg he's the best he was awesome and Theresa his nurse too. We went back for a follow up in Aug. they're just so nice and caring and good at what they do. I'm sure you'll be fine the sucess rate is fantastic. Good Luck, thoughts and prayers are with you. ::) :D :)

AK Thank your heavenly Father for looking after your Mom. She can hv surgery on the road to recovery to the best of yr ability. Praise the Lord. How is she getting on?
What a comfort to know this web site. I have just been diagnised with MoyaMoya on 25th Aug 05 after a rupture of one of the little arteries which by God's blessing it sealed its self. I am 50yrs old. I  was told the dignoses was sickle cell related vascular occlussive pathology. No operation can be done but I HV TO TAKE IT EASY! How do you do that? The only treatment they can offer me is blood transfusins every 3to 4wks.  Has anyone had this experience. I went into hosp on the 20th Aug for them to discover the ruptured artery and was sufferring severe headaches with nausia which kept me in hospital until discharge on 13th Oct.Was told this can happen again any time and can hv a stroke any time.
Anyone with suggestion, what do you not do to be careful if anything? I hv been off work 5 months now. How long does it take for a ruptured artery to heal?

Anyone had a ruptured atery? I hv had no strokes. May be mini strokes which I ignored as I hv had problems with my foot which the doctors did not know how to treat. My right foot ached,swollen at times, went numb at times and basically it was a pain I learned to live with until today.   God Bless all suffers and supporters

Hi,

GUESS WHAT...bingo, I am one year younger than your  mom AND I had my surgery with Dr. Steinberg on my right side 6/21/05. This was the BEST THING I EVER DID.
I was diagnosed 8 years ago, after having MUCHO TIA's etc. but recently the NUMBNESS and this involuntary jerking "said hey YOUR BODY is telling you, time is of the essance." Any way, I was being seen by UCLA for the past 6-7 years but I didn't get it....I didn't know HOW and WHAT MM could really do. So, after many years of denial I went on DJ's web site and decided to contact Dr.
Steinberg. After sending my films over from UCLA Stanford said get down here right away.
I had NO CHOICE, my surgery was scheduled &  within a month and I had the procedure done. I never knew I only had 10% blood flow on my right side...NO WONDER I was 50 in a 150 year old body and could barely drive home sometimes because I would get so TIRED!

So, my suggestion is get that surgery done ASAP before it's too late and have Dr. Steinberg give you his opinion.
They are watching my left side now, but there is no doubt if I need the left side done it will be done by Dr. Steinberg. BTW the ENERGY you feel afterwards is remarkable! I also want to mention I have been a diabetic since 12 years old.

Good luck and DON'T WORRY it's been 6 months now and I was NO YOUNG CHICKITY CHICK when I got this by pass  but now I will PARTY on "New Years Eve!"

LOL,
itsme

    Hi Amy, well you have me, I'm a male just turned 50.  I was diagnosed at the age of 46.
    I know that it's frustrating to keep hearing that it's mostly children and how they usually respond better to treatment.
    I had EDAS surgery 3 months ago and so far, I'm doing OK.
    Hang in there and stay on this site.
    Tom G.

Hello Amy,
I'm 34 with MM had my sta/mca bypass 5 months ago and my mother who is 54 years old has been tested and also has MM all the testing is done we had the final visit yesterday for her with the neurologist. She will now go to see the same brain surgeon I had Dr.Day. I know she will be in very good hands with Dr.day.
The neuro did say yesterday that people with MM are usually diagnosed in their younger years. My mother had strokes back in her 40's but, it was blamed on high blood pressure. It was never looked into to. Then when I was diagnosed, my mother started to tell me one day that she had the same symptoms. Then she began to get the testing done,and diagnosed. Welcome to the MM site.                         Lena.........
   

Amy~

Sending warmest wishes to your mom and entire family.

I was 49 when I had my first stroke. Was severe. The docs here in Humboldt county (Northern California) sent me to San Francisco and Stanford because they were alarmed that a person of my 'youth' (age 49 then) had a hemmoraghic stroke.
Moyamoya was confirmed and I had the bypass surgery with Dr. Steinberg at Stanford, CA.
When I reached the usually dreaded age 50, I was elated!!!!
Then I stroked again and was back at square one.....but I'm now 55 and doing well. Have mobility, my thoughts get scrambled at times but I'm ok and delighted to be alive and aware that many of my struggles in early years was due to moyamoya.
I'm glad to share with the folks on the 'board'.

Again, I hope things go well with you all.

Linda A.
(LA)

Amy,
I'm another "mom" who was diagnosed with mm at the age of 46 (in 1997) after having a severe stroke, then had 2 sta-mca operations with Dr. Steinberg 8 and 10 months later & have been doing quite well since~~ that's  8 1/2 years ago!!  I still have right sided weakness as a result of the stroke but people who see me today after knowing me right after my stroke think it's a miracle that I'm doing so well... (couldn't walk, talk, was almost was put in a nursing home at first & now I'm driving, am completely independent  & haven't even used a cane in 7 years!!)  

I see that you started this post 2 months ago~~ what's going on now??  I hope all is well & that your mom is getting the best care available to her.  ~deb