Hi Jai Li and Family,

Welcome to the MoyaMoya family.

I am sorry to hear of Jai Li's medical issues however, I am glad to hear you are taking Jai Li to Dr. Scott who is a MoyaMoya specialist. He will decide what type of surgery is best for Jai Li, if in fact she requires surgery, as a result of MM. The common surgeries are STA-MCA and EDAS. There is information on this board about the different types of surgeries under medical info. There are posts about the different types of surgeries under MM related information.  Also, Dr. Scott has a web site and it has a question and answer page. Some of your questions may be answered by viewing that page.

I realize this is very overwhelming to you. I am not a doctor but I will share with you my experience with being a caregiver to my brother who has MMD and underwent two STA-MCA bypasses this past May at Stanford.

My experience has been that one can have the classic symptoms of MMD and the collateral vessels not be present or seen. My brother is a prime example of that. He had numbness and tingling in his 30's then had TIA's and then had a stroke and the MM collateral vessels did not show up even on an angiogram at that time. It wasn't until several years later when another angiogram was performed that the collateral vessels were seen. Keep in mind, it is different for everyone. Also, the symptoms of MMD mimic other conditions as well. You are in good hands with Dr. Scott. 

Additionally, Dr. Scott will let you know when Jai Li can travel after her angiogram. I flew almost 3,000 miles with my brother only about a week after having both surgeries. Again, I don't know if Jai Li will be permitted to travel immediately after the angiogram or not. Dr. Scott will have to answer that question.

As for the hair, my experience with my brother having surgery at Stanford is they only cut the hair where they make the incision. They don't cut or shave your entire head. Now that may be different at Boston and it may be different depending on other factors but certainly Dr. Scott can also answer that question as it specifically relates to Jai Li.

Again, I know how overwhelming a diagnosis of MM can be and how the many questions flood your mind. Know that you have come to the right place for help and support. This is a terrific group of people from all over the world and you will most likely hear from others about their experiences. Especially those who have children and who have been to Dr. Scott.

Hang in there and in the meantime, don't hesitate to ask questions. We will answer you the best we can based on our personal experiences and knowledge level.

I hope I have been of some help to you. I definately wanted to acknowledge your post and welcome you to the MM family.

Please keep us posted on Jai Li.

Lore

Hi Stephanie,

I just wanted to welcome you to our MM family and let you know that you and Jia Li, are in our thoughts and prayers.

To answer your question, YES, as Lore mentioned with Kevin, we have seen many cases where an MRI/MRA can miss the puff of smoke and the arteriogram catch it. The Angio is the definitive diagnostic test for MMD. A few members have mentioned that their doctor also said that they do not need the angio to diagnose MMD, but that is how you distinguish the MM expert from the less experienced doctor, IMO. Your type of situation is specifically why we always advise going to a MM specialist, a neurosurgeon who knows the different factors involved from experience and will explore the appropriate avenues to get the answers before any damage is done.

Well, that depends on what type of surgery the doctor performs. Again, another important factor for a MM specialist, for the doctor to know which type of surgery best suits that specific case, and that the doctor has experience performing all the procedures. In your case, IF Dr. Scott performs surgery; he primarily works with children and he’ll most likely take the donor artery from Jia Li’s herself, a “scalp artery” and attach it directly to the brain surface, to induce new blood vessel growth to the brain over time. All the procedures for MMD have the same concept, in that, getting blood to the blood starved brain to prevent a stroke. Some need it faster than others, depending at what stage of the disease you’re at. Many factors are involved with each individual case, and it’s different for each person. Generally speaking though, with the surgery, the patient has an excellent outcome.

We’re here with you every step of the way. Please feel free to ask anything or just vent, we understand. You’re in great hands with Dr. Scott and I’m so tickled you stuck with it and went to a MM expert.

Mar

Wow...you guys are great! Imagine steering thru this alone...it would be ten times worse!!!!

Thanks again...will keep you posted and you are all in our prayers for continued recovery success.

Stephanie