Hi Monica, 

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.

Mar

Hi Monica,

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      

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

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,
             That really pisses me off too . 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

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.

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!    Oh my....

Quote:


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   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!!!  ; Hooray!!!

I'm telling you...this site not only provides so much needed comfort and support, but I'm sure has saved many lives!     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...

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 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

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

Monica,

I am so happy that in the end you were able to seek the proper medical attention! 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...    Monica, I know everything will be just fine. You'll be in my prayers... Wish you were back here in Hawaii, though.  ;

Aloha,
Shan

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

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!

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