This thread is the best example in my opinion of all the discussion that we've had as to why you need A MOYAMOYA SPECIALIST so they know what the proper surgery for you is. Everyone's experiences and opinions explain why in a nut shell.
                             Nancy
                                          
                 

Hi Yassi,

I think you’re wise to get a second opinion with Dr. Steinberg. It seems to me, (IMO) to be the best and smartest thing for you to do at this point. #1- He’s a MM specialist. He will know the best route for you, weighing all the factors in your individual case. #2- The fact that MMD is a progressive one, you’re right, you should be concerned with the possibility of a major stroke if you wait. Dr. Steinberg will tell you in his expert opinion, if he thinks it wise to wait, and if surgery is an option in your case. #3- You have a large group of people from around the world here, praying for you and giving you support with what ever your decision is. You’ve weighed your options so far, and decided to seek another opinion from one of the best there is, again... wise decision, IMO.

As far as the risk with the different surgeries (direct/indirect) IMO, it's improper for us to say which is a higher risk, because either the direct or indirect methods, it's still brain surgery… there’s a risk no matter how you look at it with all of them, and each and every case is different, with different factors involved with each particular individual. IMO, it's for a surgeon who has experience with each method of surgery and experience with MM the disease itself, and the specifics of your individual case, to say which surgery is best, or riskier, not us. That’s what a second and third opinion with an expert is for, to weigh the facts of everything involved (your specifics) and all the options available to you and decide together what is your best plan of action for you to manage this rare disease.

You'll be in my thoughta and prayers. Please keep us posted.

Mar

Hi Jim,

I'm so glad you sent Kathie's films to Dr. Steinberg for an expert second opinion.

You have worked hard to educate yourself and to seek the best care you could find for this rare disease for Kathie's well-being. I applaud you for all your efforts.

I too am a Dr. Steinberg and Teresa fan. I  have told the story over and over again. When all doctors wrote Kevin off and sent him home to live out whatever life he had left, Dr. Steinberg accepted Kevin as his patient and operated (2 STA-MCA) direct bypasses in May of this year. We are eternally grateful to Dr. Steinberg for giving Kevin a second chance at life.

You know Jim, you made a good point when you mentioned about this is your brain. When I was looking for a doctor who would simply look at Kevin (with hopes they would at least attempt to operate) I had "life saving" and "we don't have much time" on my mind and it didn't even dawn on me, at the time, about the brain being involved. I just knew Kevin needed help and he needed it now. I felt if a MM specialist was willing to take Kevin on, he probably knew what he was doing. I was desperate to find someone to help Kevin. Once I saw the Stanford MM program from start to finish I knew I had not only found a brilliant and  confident doctor who was willing to help Kevin, I felt I had found heaven. In restrospect, I did find heaven. As you mentioned, Dr. Steinberg will render an opinion for FREE. He is not only a superior surgeon, he is such a wonderful, caring and humble person. Wish there were more doctors like Dr. Steinberg.

As far as the type of surgery, Dr. Steinberg will decide that and answer any questions you may have. What's nice about going to Dr. Steinberg and Stanford is they have an entire team of medical professionals from the testing to the surgery (Dr. Steinberg) to the anesthesia and follow-up who are devoted to moyamoya and see it every day and have everything in place and it runs like clockwork. It is truly a complete moyamoya program from start to finish.

Kathie is in excellent hands and I am confident Kathie will do just fine. I have always said, if Dr. Steinberg could help Kevin in his physical state at the time, IMO, Dr. Steinberg can work miracles for others as well.

I will keep you and Kathie in my thoughts and prayers as you prepare to go to Stanford.

Jim, keep us posted and let us know how you and Kathie are doing.

Also, let us know what your family doctor found out about MM.

Hugs,

Lore

Oh gosh, Yassi, I'm sorry you're having to go through this.  I wish I could offer a professional opinion but, as I am not a doctor, I can't.  Being dehydrated as a MM patient, though, isn't good.  I'm glad you were given fluids and feel better, and would suggest that you not over-exert yourself with much of anything at this point.  

I am sure you'll be hearing something from Dr. Steinberg as soon as he is back next week.  The waiting must be difficult, and of course you're scared!  Trust what you're feeling with your body - you're the only one who can possibly know how and what you're feeling.  And certainly don't let anyone tell you you're going crazy!  This disease isn't something to mess around with, and you've done the right thing in seeking the opinion of an expert.

Hang in there, try to relax over the holiday weekend, and know that there definitely is hope!  We'll be thinking of you, and will add you to our prayers.  Please keep us posted as you are able, o.k.?

, Jill

 

Thanks Jill and Lore! It helps to know that there is support out there. I have been drinking water like crazy and it just sems like my body is soaking it all up.  I didn't realize how dangerous dehydration is for someone with MM till the doctor yesterday said he had to find a good vein ASAP and get fluids in me.

You all have been wonderful and I will keep you posted as to what Dr. Steinberg says soon.

Have a great holiday,

Hugs 
yassi

Update as of today.

I got an e-mail from Joli at Dr. Steinberg's and she said they are waiting on another test results to be done. I sent them my records and the hospital here didn't include my angiograms. It looks like I may be having surgery soon.    

I am going to get a copy and next day air them. Let you know when I know more.

Happy Holiday's
yassi