I.... like most people on here... am unfimiliar with this disease. I've just discovered it when we found out that my mom had it. I live in Charlotte NC. The doctors here doesn't know anything about the disease except for what they found out on the internet. Same as I. My mom is only 57 but it's really taking a toll on her. She has been in the hospital ever since it was discovered. First the docs said they would be able to do a bypass, then they said they wouldn't. It's been taking a toll on all of us.... especially my dad...who has been back and forth to work and to the hospital everyday. What I am looking for is any information of a Doctor that is an expert in the disease in or near North Carolina. My mom isn't able to travel because she is bed ridden. I feel that I owe it to my family and my mom to try and find the best people for her. It's hard to see my dad talk about her illness and cry about it. Pretty much my whole family does. It's just frustrating not knowing what to do and having the docs telling you that there isn't anything they can do either. I refuse to see my mom die and not know if there is anything I can do to help her. We haven't told her that the doctors said she is inoperable. It would hurt and scare her too much.... to know that she's slowly dying. So please give me any information that could help. Thank everyone before hand and God Bless you all. ---Danny

Hi Danny and welcome to the MM family,

I know how frighening it can be to receive a diagnosis of MM and have no doctor familiar with the disease. I know as this happened to my brother.  We live in Ohio and I got him to Stanford where he was treated by Dr. Steinberg.  He had two strokes and a dissected right upper internal carotid artery so I know there is hope and it is a matter of moving forward as soon as possible.

Not knowing all the specifics about your mom's current medical state, my immediate suggestion to you is the same as Bobby since I am unfamiliar with any MM expert in your area.  I would go a step farther and suggest to your mom's doctor to contact Dr. Steinberg at Stanford University today via telephone and see if Dr. Steinberg can recommend a Neuro Surgeon in your area to treat your mom ASAP or depending on your mom's current medical condition and state, if he would suggest life flighting your mom to Stanford or another facility closer who can treat your mom ASAP.

Dr. Steinberg's  phone number in California is (650) 723-5575 and his fax number is (650) 723-2815.

Hang in there and know that we are here to support you and your family in anyway we can. Please ask any questions and keep us posted on your progress with getting your mom treated ASAP.

Your family is in my thoughts and prayers.

Hugs,

Lore

Thank you all for the responses. I already feel close to the members of this site. I just don't want my mom to past and me not knowing if I'd exhausted all my resources to try and help her. Thanks again.

Hi!
I just want to agree with what everyone is saying  and tell you that I live in Raleigh, NC.  I went to Stanford for my surgeries.  I was treated prior to surgery by the head of the stroke clinic at UNC-CH hospital.  His name is Souvik Sen.  Best wishes to your family and know that you are in many people's thoughts and prayers.

Take care,
Stephanie

I live in SW Virgina and had my surgery at UVA in Charlottesville. My drs at UVA had heard of MM and the surgeon had done about 10 surgeries for it.  And that was ten yrs ago.   Have u contacted anybody at Duke?

   Hi Danny,  My name is Tom and I live in New Jersey.  I have MM but I have a friend in Charlotte NC with MM  She had her surgery quite a while ago by Dr. Craig Vanderveer in Charlotte. I'm not sure where he works out of now but I'm sure she knows..  If you want to call her let me know and I'll ask her if it's OK.  Try asking your mother's neurologist,  I'm sure that he can locate him.  His reputation is very good and has done this type of surgery for quite a while. 

   Take care and good luck   Tom G.

I’m so very sorry for your loss Danny. I couldn’t possibly have any words of comfort; all I have is a heart that cares and it’s breaking for you right now. I can’t even imagine your pain, God love ya and comfort you!
All I know is the way I handle a heartbreaking story like this, is spiritually, believing that sometimes no matter how hard we try, we can’t always fix things, because ultimately, it isn't in our hands, it’s always been in His hands. He sees the bigger picture and I have to trust and believe in that, and not lean on my own understanding.

My thoughts and prayers are with you.

Mar

Hi Danny,

My sincere condolences to you and your family for your loss.

I know you worked hard to get your mom the proper care she needed and deserved and you are to be commended for your hard work and effort. Not everyone would have done what you did to see to it that your mom got the best possible care. You did everything you could given the circumstances.

I hope you find some comfort in knowing we are here for you and we want to support and help you anyway we can, so please don't hesitate to reach out to any of us at any time. 

My thoughts and prayers are with you and your family.

Hugs,

Lore

I'm sorry, Danny. I know there is nothing I can do to help, but my heart is saddened. You did all that you could, you're a good son.
Kim

Danny,

I lost my mother in 2002 and my father died at a young age and died on my 26th birthday and I lost an older brother in 2004 so I do understand how you are feeling now.

It is only natural to ocsillate through all types of emotions at a time like this but please don't beat yourself up. You did everything you could do and you never gave up hope of getting your mom the best treatment.  It is obvious you loved and cared deeply for your mom and that you were very close and had a very special mother/son relationship.  You are the caring and thoughful son every mother would love to have.   

When my father died at the age of 52, as a result of melanoma cancer, I felt I could never go home again.  I would see my father's chair, the chair he always sat in, and it was empty. It was just never the same. The feeling is probably the same for you when you are trying to help your dad clear out your mom's belongings.  I had a really tough time with that too because it was a part of my dad and I had just lost my dad so how could I discard his belongings?  What I did was, I saved some things that had special memories for me like his watch and jewelry box. When I was growing up my dad would let me arrange the jewelry inside the box and let me put my own special jewelry in it for safe keeping. The box made me feel like I had a piece of my dad with me.  I did the same when my mother passed in 2002.  My father died in 1979. To this day, I still have that jewelry box. My mother was an artist and I have many things she personally made and painted. I feel like they are still close to me and live on in my memories.  You and your sisters may feel that the Mother's day money cards from a year ago is something you want to keep as a memory.

I hope this brings you some comfort in knowing you are not alone and many of us have traveled this road and we do share your feelings and know how painful the loss of a loved one is and how important it is to have support during time of grief.

Keep in mind MoyaMoya is a rare and progressive disease and if it is not diagnosed early and treated in a timely manner, the chances for a good outcome diminsh greatly. It is not your fault.  It is that the word about MoyaMoya has not reached the medical community like we would like it to.  As a group we have more work to do.   

Danny, I believe things happen for a reason.  We might not know the reason but I firmly believe there is a reason you found the MoyaMoya family. Perhaps it is for us to re-think how we promote MoyaMoya awareness to the medical community.   

The lesson learned for me from this is that there is still a lot of work to do in getting the word out about MoyaMoya the disease so that it is diagnosed early before strokes and hemorrage occur and before the chances for life diminsh greatly and that appropriate treatment options are performed and in a timely manner as well.

Please know our hearts are saddend with the passing of your mom and we too feel the pain of your loss and we are here to support you anyway we can. 

You and your dad and sisters are in my thoughts and prayers.

Hugs,

Lore

Danny~

I'm in tears  of grief -- sending comfort  and love
to you and your family.

All the work you did to get help (and answears) for your mom was commendable.

I have mm and am your mothers age.

You'll never forget your mothe and these tough times. I hope you'll find solace as the years go by.

Love, Linda  (LA)

I know how you feel.  I lost my dad when he was 56 from a heart attack.  If I had called 911 for him he might have lived.  He didn't want me to call.  I felt guilty for a very long time.  There is nothing I could do to change it though.  My older brother died at age 47 in Oct. from pancreatic cancer.  The doctors didn't diagnose him until it was too late.  It's a nasty tricky cancer.  It will be hard for a long time.  Then it will be okay for awhile and then it will just hit you like it was the first day all over again.  So don't be sorry you haven't been here.  You will need time for yourself.  I had the dream experience too.  It was so awesome I knew my dad was okay.  It didn't happen right away though.  We are here for you.