Hi Everyone!

I’m 24 years old and was diagnosed with Moyamoya last month (August) and I’m still in shock.  It doesn’t seem to be a reality yet but then again, after suffering a stroke on my right side affecting my leg, arm, and speech, plus having TIA’s, the reality is starting to sink in.  I just want to say that reading everyone’s posts really helps comfort me and reminds me that I’m not alone.  A BIG thank you to DJ for this great website!  

I’m American but living in Germany.  The health care is good here; however, my doctor thinks surgery is too risky.  He wants to re-test me at the end of September to see the progression.  He was saying that I could stay on blood thinners…I disagree! I feel like a walking time bomb.  I’m scared of having the one “big” stroke that will take my speech away and leave me in a wheelchair (My stenoses is on my left M-1 segment A Cerebral Artery). So, I have sent my files to Dr. Steinberg at Stanford and to Dr. Schmiedek, a Moyamoya specialist in Mannheim.  I'm just waiting to see what their opinion is.

Monica

Hi Monica,  [smiley=wave.gif]

Welcome to our MM family.

Yes, those words, Moyamoya disease can put anyone in shock. We certainly understand, and I remember all too well, but I have to say, you're heading in the right direction in reading all you can; knowledge saves lives with this rare disease.

You are making a wise decision, IMO, in getting a second or even third opinion from doctors experienced with MMD. You go girl! It’s easy for some doctors to ask you to wait, but they’re not at risk for the devastating stroke. If more specifics were known about this disease, I’d say perhaps waiting is an option in some cases, but we just don’t know when a stroke will occur, and unfortunately for you, the facts at this point speak for themselves; it’s a progressive disease, you’ve already had a stroke… wait for what?? Although blood thinners may help, no medications prevent the arterial narrowing process from progressing or keep the moyamoya vessels from developing. Those are the facts at this point. So waiting is a scary thing.

We're with you all the way, and we'll be by your side whatever your decision.

Please keep us posted. You’ll be in our thoughts and prayers. [smiley=hug.gif]

Mar

Monica,
I want to congratulate you for following your gut reaction and for being so proactive in your medical treatment.  One of the clearest lessons I have learned these past years is that we are each responsible for our own health care;we cannot depend on our doctors all the time. But, you seem to know this already!

I also want to say that sending your info to Stanford was probably one of the best decisions of your life.  You should hear from them shortly.  I heard in about two days.This website has tons of resources for a possible trip to Stanford.  I started a thread in June called (?) "What to expect in Stanford".  People wrote great info...you should check it out!  I just had my surgery in July, so if you have any questions about surgery, feel free to ask any questions.  

I am sorry that you had a scary stroke and have MM.  It is indeed a scary disease.  I remember feeling like I had a time bomb in my head.  However, you have found a great site for support and info.  Good luck with Steinberg!

Stephanie ;;D

Hi Monica, [smiley=wave.gif]

Welcome to the moyamoya.com family.

I'm glad to hear you have sent your films to Dr. Steinberg.  My brother Kevin's (cubbie) story is much like yours wherein he was "finally" diagnosed (4 years after a significant stroke) and pretty much sent home to live out whatever life he had left.  It wasn't until we found moyamoya.com and Dr. Steinberg that Kevin got attention.  We sent Kevin's films to Dr. Steinberg and had an immediate response.  The rest is history. In May of this year Kevin underwent two direct bypasses and is doing very well.  He is still in speech therapy but has progressed marvelously.  The thing you will read and hear most here is about getting a second opinion from a MM specialist and reading all you can about MM to educate yourself.  We are soooooo glad we sent Kevin's films to Dr. Steinberg and are internally grateful to him for giving Kevin a second chance at life.

Kevin felt the same way you do now before he went to Dr. Stenberg.  He felt he was a walking ticking time bomb. That has changed now that kevin has been treated and his blood flow restored.  Kevin's bloodflow before surgery was in a negative on the left and only a positive 15 on the right side. We also realize every MM case is different.  There is a "common" thread but yet it depends on a lot of variables as to what treatment is best at the time based on your symptoms and condition.  We all admit we are not doctors but certainly we have all been through a lot with this disease.  Some worse than others afain depending on many variables.  

We are all here to support you and wish you the very best in dealing with this disease and will anxiously await your response to Dr. Steinberg's evaluation of your films and tests.

Keep us posted on your progress and don't hesitate to ask questions.  Chances are, someone has experienced whatever it is you are experiencing.  

Hugs,

Lore      

Monica,

Welcome to the group.   I am glad you found us!  It sounds like you are already on the right track by sending your films to two moyamoya specialists.  You are absolutely right in not wanting to wait for surgery!  The surgery is MUCH less riskier than having untreated Moyamoya disease.

Just to share my own experience: My 22 month old daughter, Daphne was diagnosed with Moyamoya disease this January, after suffering two strokes.  We were told that Daphne would not be a surgery candidate, and that she would eventually die from more strokes; however, we got a second opinion from Dr. Steinberg, and Daphne had her surgery in California this March.  She had two surgeries a week apart (one on each side), and has recovered really well.  She is doing new things every day, and has regained use of her arms, legs and hands, and has been babbling up a storm  :)  We are so glad that we got a second opinion, and were able to find a doctor who could help her.

The surgery for MM becomes much less of a risk when you find a doctor who has a lot of experience with the disease.  I am so glad to read that you are seeking out experienced surgeons... that is the best thing you can do for yourself, right now.

Please keep us posted.   I hope you get some reassurance from this group... this is a wonderful group of people.

Jenny

Hi Monica -

Welcome to the family.  I have to give you props for taking the lead and doing the right thing.  When I was first diagnosed I was also told that I didn't need to have surgery right away.  But, like you, I felt like I was a ticking time bomb just waiting for a stroke - one that  would be a lot worse than I had experienced at the my diagnosis.  The more and more I read, and with the help of this wonderful site, I made the decision to go ahead with the surgery.  I'm a patient of Dr. Scott - on the east coast.

Please know that we are here to offer support and to try and answer questions to the best of our ability.  Welcome, and good luck!

-Shari

Hi Monica!  

I'd also like to extend a warm welcome to our MM family.  You've received such great advice from Mar, Stephanie, Lore, Jenny and Shari, that I really have nothing but my welcome to add!

I can empathize with your reaction of shock.  We felt the same way when my daughter was diagnosed 15 months ago at age 17.  She had her first surgery at Stanford just 2 weeks after diagnosis, as her occlusion was pretty severe.  The second surgery was a week later.  Looking back at the experience, it (in a way) feels very surreal, like it was all a dream.  The good news is that Tara is now doing very well.  She's active, in her freshman year of college, and just loving life!  (By the way, Dr. Steinberg is a master at what he does - our opinion of course, but he's one of the few who deals with MM on a daily basis!)

Not knowing your specific history, I am not able to comment on whether or not the risk of surgery outweighs the risk of stroke.  Again, the best thing you can do is to seek the advice of a specialist, and it sounds like you're doing exactly that.  Good for you!  We'll be anxious to hear what is suggested, and what plan of action you decide is best for you.

There are many experienced people here . . . please feel free to come to us with any questions, as we've all "been there" in one way or another!  Hang in there sweetie, and you'll be in my prayers.

Hugs from California,
Jill

Thanks for all the great support.  I never realized how much support groups can help a person go through tough times.  It's nice to be able to talk to you guys who have been through or are going through similar situations.

Well, I got another SHOCK today.  The moyamoya specialist in Mannheim Germany got back to me today.  He says that I do not have moyamoya but I need surgery as soon as possible.  I asked him why he thinks it's not moyamoya, considering 3 doctors at the first hospital all agreed it was moyamoya and I'm no expert but I have a CD with my angiograph and it definately looks like moyamoya.  He said it's too difficult to explain to a lay person but that it is not moyamoya.  He wants me to come in immidiately for extracranial bypass surgery (EC-IC).  I don't know what to do...except, to wait to hear what Dr. Steinberg says.

Thanks again for all the support!
Monica  

Monica wrote on Sep 7^th, 2005 at 2:39pm:

He said it's too difficult to explain to a lay person but that it is not moyamoya.

[smiley=furious.gif]  Grrrrr!!  That statement really got my goat!  Some doctors attitudes.... [smiley=hammer.gif]

Anyway, if you don't have MM then why exactly (in his opinion) does he want you to have the surgery and what ailment (again in his opinion) do you suffer from that necessitates immediate surgery??  I guess though he wouldn't answer you because you're just a dumb "lay person"? [smiley=mad.gif]  I mean, who knows, maybe he is correct and you don't have MM but geez, at least give some other explanation.

Well, hang in there Monica and I certainly will pray that you hear from Dr. Steinberg as soon as possible.  It's all the uncertainty and waiting that's so difficult.

[smiley=hug.gif]Lisa

Monica,
             That really pisses me off too [smiley=furious.gif]. Like you would just run in there and say o.k. give me brain surgery and I won't ask why nor do I need to know, what does he think your an idiot. Some doctors are really to much. You will feel much better after hearing from Dr. Steinberg I'm sure. Unbelievable I had to read it twice to make sure I read it right. Hang in there I know its frustrating but it will all work out in the end. Keep us posted. Thoughts and prayers are with you.
                                               Nancy

Wow Monica, I’d be shocked too if my doctor said that to me. Please don’t get me wrong, I’m not a doctor, and I don’t know your specifics, but it still seems to me, either you have the puff of smoke or you don’t. (??) I’d certainly insist on some answers to that one, and please share it with us if you do. What else bothers me is… if you don’t have MMD, (the puff of smoke) as the 3 other doctors first diagnosed, why on God’s green earth would this doctor suggest brain surgery, and not explain why?? This just doesn’t make sense to me. I agree with Lisa and Nancy, how insulting to say you wouldn’t understand without first trying.

I hope and pray this all falls together and you get some answers ASAP. My thoughts and prayers are with you girl.

Mar

You raised a very good question. It would be excellent to have a doctor here explaining a little. From my reading I have understood, that not all cases where arteria in the area of Circle of Willis get narrower and form, to compensate, collateral networks, should be diagnosed as moyamoya. I may be wrong, though.

Hi Everyone!

The Mannheim Specialist and I argued on the phone for so long until he finally agreed to see me and run tests without surgery.  He was insisting that the only way I could come in for more tests (for him to be sure) before he told me why he thinks I don’t have MM, would be if I had surgery the next day!  That’s Ridiculous!!!!!  After I tried to explain a million times that I need to digest the information, think about it, research it, not to mention tell my family I’m having surgery, he finally agreed to see me.  I really don’t understand his logic or his motives behind all this.  

In the mean time, Dr. Steinberg got back to me.  He said I definitely have MM.  He was so nice on the phone, took his time explaining things, ahhhh I can’t tell you how nice it was to talk to him after the last doctor!  An interesting side note- My present doctor has me on an aspirin a day plus Plavix (a blood thinner).  Dr. Steinberg said that Plavix hasn’t been proven to prevent strokes and that it thins my blood too much.  That was interesting because my dr. told me that I won’t have any strokes on Plavix but I have had a few long-lasting TIA’s.  

So, I have scheduled my surgery for Sept. 27th at Stanford with Dr. Steinberg.  I am still going to see the Mannheim jerk this Wed. but that’s just more for curiosity than anything else.  I want to hear his diagnosis.  I'll keep you guys posted!

..and again, thanks for all the replys and support!

Monica

Monica,

Amen!  I am so happy to hear that you heard back from Dr. Steinberg and have scheduled your surgery.!  ;)  I'm sure that speaking to him has provided much needed relief and a better understanding of your situation.  I am also so thankful that you did not take the advice of the Mannheim Specialist who suggested you have immediate surgery!  :o  Oh my....


Quote:

Dr. Steinberg said that Plavix hasn’t been proven to prevent strokes and that it thins my blood too much.

Just wondering, did he suggest you take something else instead of the Plavix in the meantime?  I'm curious because I too was taking Plavix but have changed to Aggrenox.  My neuro also mentioned that Plavix has more benefits for  [smiley=heart.gif] related issues and therefore made the change.  (My first two neuorologists had me on Plavix.)

Once again, I am so happy to hear the great news!!!  ;;D Hooray!!!

I'm telling you...this site not only provides so much needed comfort and support, but I'm sure has saved many lives!  ;)  [smiley=twocents.gif] Amen!

Take care,
Shan

p.s.  Hopefully others in similar situations may read your posts and realize how important it is to seek the advice of a MM specialist, which is what the others who have previously responded to your post have been strongly recommending... :D

Hi Monica,

Wow, you've had a crazy few days!  I'm sorry for the rollercoaster ride you've been on, but it sounds like you're on a clear path now.

One of the wonderful things about Dr. Steinberg is his "bedside manner".  Not only is he a MM specialist and an incredibly gifted neurosurgeon, he's also a nice person, who will take the time to explain things to you.  I think you've made a very wise decision to come to him!

Which leads me to my next point . . . my family lives in San Jose, about 1/2 hour from Stanford.  We would love to be of support to you and your family members while you are here.  We have spent time with a number of families as they've gone through the surgery process, and it has been pretty inspirational for people to see Tara (my daughter) and how well she's recovered.  As for my husband and I, we just love providing support.  Surgery is a frightening prospect, and we don't want anyone to be alone as they go through it.  

Anyway, I'd love to talk to you about your trip out here!  Please feel free to send me a private message, and if you or any of your family members would like to talk on the phone, I'll send your our phone #.

Good luck with your Wednesday appointment with the Mannheim doctor.  I, too, will be interested in hearing what he has to say . . .  Hope to talk with you soon!

Warmly,
Jill  

Monica,
I am thrilled for you!  How amazing you have been, standing up for yourself, against the almighty doctors no less!  You have found your own way to a treatment.  

Along with many other people on this site, I had my surgeries at Stanford.  I am only 2 months post-op.  If you have any questions at all, please ask.  I am eager to be as helpful as I can!  

If you have any questions regarding travelling to Stanford (Palo Alto) let me know.  My family and I stayed at a great hotel called The Creekside Inn.  They should offer you a medical deal if you let them know why you are coming into town.  If this doesn't work for you, there are other great resources on this website for finding a place to stay.  

The hospital is very well run and strangely beautiful.  I was very worried before my surgery, but the MM family really helped.  I started a topic called "What to expect in Stanford", on page 4.  I bet the messages there will be helpful for you as well.  

Remember, please ask me any questions you might have.  I am not working yet, so home most of the day....have tons of free time!

Take care and good luck with your other doc, ;)
Stephanie

…Ahh, what a waste of time to Mannheim doctor was!  He was just as arrogant and rude in person as he was on the phone.  He told me that I don’t have moyamoya because the stenoses is only on one side of my head, and MM occurs on both…WRONG!  He also said I don’t have the small blood vessels (puff of smoke); although, I saw them on my angiogram when my doctors first diagnosed me.  When I asked the Mannheim doctor, what that was then, he replied, “I don’t know but it’s not moyamoya.”  He also said, that it’s really uncommon for people to have MM that aren’t from Japan.  I can’t believe this guy is considered the MM specialist for Germany.  It sounded like he read one MM report when it was first discovered, and now claims to be an expert!  He said I had a stoke due to my stenoses like any 70 year old person would have had but that it’s just uncommon that I’m so young.  He said, he recommends surgery before I have another big stroke.  He tossed a pamphlet for EC-IC surgery across his desk and told me to read it and ask questions only after I have read it.  I asked him what could have caused the stenoses at my age?  He said, he doesn’t know.  I asked, if I had the surgery, if he thought another stenoses would develop somewhere else since he doesn’t know what causes them.  He response was, “this is medicine, there are know guarantees.”  It went on and on like this….there was so much unbelievable things this guy said and did, I could go on forever.  

Well, this will probably be my last post for awhile.  I am flying out of Germany on Sept 21st for my surgery on the 27th with Dr. Steinberg in Stanford.  Thanks to all of your posts about what to expect and recovery, I am not too scared and I am pretty optimistic….at least for now ;)

Monica  

Monica,

I am just catching up on the posts in this thread.  Wow, you certainly have been through a lot in the past few weeks!

You will be in excellent hands with Dr. Steinberg!   Keep us posted on how you're doing, when you get a change.  We'll be thinking of you  :)

Jenny

Oops... I meant "chance", not "change"  [smiley=blush.gif]

Clumsy fingers!

Monica,

I am so happy that in the end you were able to seek the proper medical attention! :D I guess this should be a lesson for everyone...that just because a doctor may "claim" to be a MM specialist, they infact may not be one.  I hope that by seeing you, you have sparked the Mannaheim doctor's interest in finding out more about MM, especially if he is known to be a MM specialist in Germany.  Just imagine others with this disease in Germany who haven't found this site and who may not know of any other MM specialists!  :-[ To me, the best advice I feel I can give others when I am approached by someone seeking advice, is to encourage them to seek medical opinions from as many MM specialists as possible.  Opinions are free, and after they gather all of the various information and opinions, then they can probably make a better, more informed and thought out decision on what to do next...  [smiley=twocents.gif]  Monica, I know everything will be just fine. You'll be in my prayers... Wish you were back here in Hawaii, though.  ;;D

Aloha,
Shan

p.s. Did Dr. Steinberg advise you to take anything else to replace your Plavix?

Hi Monica,

I'm so glad you are coming to Stanford to see Dr. Steinberg. I had MM for 8 years and finally had my surgery done 3 months ago on my right side.

Prior, to my surgery I had Tia's galore and I was just very lucky I had my surgery with Dr. Steinberg before the BIG ONE. It was he who said it's now or NEVER,
I was walking around with 90% blockage and wondering why I jerked everynight and felt sooo tired
the moment I woke up till I hit the bed in the evening.
He's an amazing doctor.

I was also a MM patient at UCLA for the past 8 years too. BUT, it only took one appointment at Stanford and one hour to decide I HAD TO HAVE THIS SURGERY.

It was the most challenging decision of my life at the time and now I am ready to go back to work Monday 9/19th. Your MM friends and I will pray for you and wish you a fast recovery.

I am so thankful to everyone on the board as well as Dr. Steinberg and his staff. Rest asuure you will be just fine.

You will look back on your surgery like most of us and realize this was the best thing that ever happened to you. No more "time bombs" to deal with.

Lots of love,
itsme

Thanks for all of your encouragement and support!

Shan-
No, Dr. Steinberg said I don't need anything to replace plavix.  I just take one aspirin a day, 300mg because Germany doesn't have 325mg, which is recommended.  I am happy to be off an extra blood thinner.  I bruise and bleed enough on just aspirin but the Plavix was causing big, extremely dark bruises that I couldn't remember where they could have come from.  I also bleed a lot when I brushed my teeth.  I still bleed a little but I used to spit out mouthfuls of blood with plavix.

It can be confusing because when I told my doctors in Germany that my American doctor (dr. Steinberg) told me to get off of plavix, they were extremely against it and wanted me to stay on it.  Another German Doctor told me it doesn't matter if you take 100mg or 300mg of aspirin, it has the same affect and told me to just take 100mg of aspirin a day.  I decided to follow Dr. Steinberg's advice, especially because he will be doing the surgery.

..and yes, I could definitely use a nice little vacation break in Hawaii!

 

Hi Monica,

Thanks for your reply...I was just wondering what he recommended.  Like I mentioned earlier, I too was initially put on Plavix by my first 2 neuros...but am now off of it.  I'm glad you're taking the advice of Dr. Steinberg...a MM specialist!  At this point, I'm not too sure if I'd listen to the advice being given in Germany.  (Just because of the recent conflicting advice being given to you.)  I know you're far from CA, but Dr. Steinberg's office is always just a phone call away.  ;)

You'll continue to be in our prayers...

Take care,
Shan

Hey Monica.  I figure you'll check in here once you get over jet lag and find an internet cafe.  What can I do besides beaming general support in a northerly direction?  Let me know--Debra in Monterey

Hi Debra  ;;D

Welcome to this site.  It's awesome that you're here to support Monica!  What a great friend!  Knowlege is power and this site has provided me many answers and insight to questions I have regarding MM.  Please do feel free to post any questions you may have too!  ;)  And..we'll do our best to answer them.

Take care,
Shan

I know some people from this list met with Monica, her dad and friend Sigrid for dinner the night before her surgery.  

I just talked to her dad and Sigrid on the phone--Monica is just now coming out of the anaesthesia and the doc says her blood flow to the brain has increased 4x and it looks great!  You folks have been a big help and relief to her, I know! :) :) :)

Debra,

Please send Monica my best.  Let her know that she's in our thoughts and prayers.  4x?  Wow!  What great news!  ;;D  I'm soooo happy!  Please tell them to give her a big  [smiley=hug.gif]!...and tell her to get better soon so she can come back and visit Hawaii!  

Thank you too, Debra, for being such a great support to her. You're an awesome friend!  ;)

Take care,
Shan

Hi Debra,

So nice to know that Monica has a "local" friend!  We (my husband and daughter) were with her, Thomas, Randy and Sigrid on Sunday evening.  We also had another recent Stanford surgical patient (Katie) and her family with us.  We had a great time getting to know Monica and her family/friends.  Today was a long day for everyone, but it was awesome to have Dr. Steinberg come out with such a good report!  When Randy called tonight, he said she was talking and feeling pretty good, which was wonderfully encouraging to them.  Hopefully Monica's recovery will continue smoothly.

Will you be heading up to the hospital at all?  It would be great to meet you!  I'll be back and forth to Stanford over the next few days, so if there's anything I can do for you, please don't hesitate to ask!

[smiley=hug.gif], Jill

Thanks for the updates, Debra and Jill!  I'm glad to hear that Monica's surgery was such a success!  Please let her know that she continues to be in my thoughts and prayers and I'm sending wishes for a speedy recovery.

-Shari

I just called Monica's dad at the hospital--and he said she was reaching out to take the phone from him--she's feeling better!  She sounded just fine; I'm going to visit on Thursday afternoon for a little bit.  

Jill, I'm so happy that you folks could all get together and share info and support--that makes all the difference in the world.  Thanks, everyone.  I'll pass on the good wishes and post an update after I see her.

~~Debra

Hi All,

I just got back to this thread today and was appalled at what Monica has had to go through in Germany. Whew!! And I thought I had it bad when I couldn't get Kevin (Cubbie) taken care of here in the states before getting to Stanford and Dr. Steinberg.

Isn't it great to have Jill as the moyamoya ambassador when going to Stanford for major surgery?  I don't know what I would have done without her and Michelle and Shane and Trina and her family and David and Terri and Mark and his family. Kevin and I traveled nearly 3,000 miles and didn't know a soul.  It's so very comforting to have such a terrific support group.

Debra, I'm sooooo glad to hear Monica is doing well. Please let her know she is in our thoughts and prayers and want to keep informed on her progress.

Hugs to all,

Lore

Debra  here.  I spent the afternoon at Stanford University hospital with Monica, her dad and boyfriend, and passed along all your good wishes.  She and they are so grateful for everyone's support. Here's the scoop:

I had prepared myself for a wan, hollow-eyed invalid.  Wrong.  Two days since the surgery, and she looks and acts EXACTLY as always.  I saw no sign of any stroke damage (she says she sometimes can't quite find the word she's looking for, but I didn't hear any verbal fumbling.)  She's got a few bruises from IV needles and a dashing 5-inch swoosh running from her temple up just inside her hairline, accented by bunches of very punk stainless-steel staples which are due to come out next Wednesday.  They shaved only about 1/2 inch to either side of the incision, so she's still got That Wonderful Hair.  She's really in very good shape--I was astounded.  Right now she's taking some meds for headaches, all very much expected, but if all goes according to plan, when she's released--probably this Saturday--she'll be taking only aspirin.  She expects to fly back to Germany on October 11.  Everyone's ecstatic and relieved all at once.  She sends her thanks to everyone for their support and good wishes.........

Thank you, Debra, for your very descriptive (loved it!) update on Monica.  Sounds like she's doing great....I'm very happy for her!

-Shari

Debra,

Thanks for the complete update on Monica.

Sounds like she is getting along quite well.

I'm so glad she was able to get to Stanford for treatment and to have you and Jill by her side.

Tell her we are all thinking of her.

Keep us posted on her progress.

Hugs,

Lore