Hi, I was diagnosed with moyamoya yesterday. I've been going to Kaiser Redwood City, but as I'm doing my researching, it seems that there are a lot of patients going to Stanford to attend to this disease. Also, I finished my angiogram last Monday and it hurt like hell. I have to take a SPECT test now and am wondering if it's the same pain? Can anyone please tell me? I'm 23 years old and I'm glad I caught it early before I could get a stroke. I am glad to have stumbled upon this site and know that there are others going through the same stress, worry and concern as I am. Thank you DJ for setting up this site! It really does help a lot!

Tracy,

Sorry you had to find us but certainly glad we are able to be here for you!  One of our "family members" (Connie1) went through the process with the Union City/Redwood City Kaiser offices about a year ago.

She paid for an appointment for a second opinion with Dr. Steinberg out of her own pocket, but I believe she ended up having surgery with Kaiser neurosurgeon Dr. Nicole Moayeri (Redwood City).

You might want to look up Connie's profile and email her personally for some help on dealing with Kaiser.

We haven't heard much from her lately so if you have trouble getting ahold of her, let me know and I'll hook you up with her digits.

Hope this helps!

DJ

Tracy,
I am sorry to hear you had MM, but it is great that you found it before you get major stroke.  As you may have already known, here is the place you can feel secure.  SPECT is much easier than angiogram.  No anesthesia.  Just a couple of injections of imaging agent, similar to MRI but without that crazy noise.  Usually everything is done within a couple of hours.  We are also in Bay Area, and my son (9 yrs) wenr through all the exams and surgeries at Stanford last November.  Best wishes,  Cotadad.

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Tracey,
What a way to start the new year, right?  Thank Heaven DJ has given those of us involved with MM a place to find information, support, and most of all, hope.  My 30 year old daughter was diagnosed in September, 2004.  We were blessed to have a chain of doctors with outstanding medical and moral ethics none of which hesitated a moment to admit they felt they were not qualified to handle MoyaMoya.  I did a thorough research of neurology sepcialists, hospitals, and surgeons even "interviewing" some to see if their knowledge matched their credentials (some did not.)  However, I did discover that 2 surgeons are outstanding, and they are Dr. Daniel Barrow at Emory U. Medical in Atlanta, and Dr. Steinberg at Stanford.  Both have had equally successful results treating MM.  Julie had her surgery (on the right side) December 7th and is going back to work this coming Tuesday.  

And, no, the SPECT scan is not as bad.  In fact, Julie fell asleep during her's!

Good luck, and please keep posting as everyone DOES care about how you are doing.

Hi Tracy,

Ever since I read your original message I have been wondering how you are doing and if you have moved forward with anything?  I'm around the same age as you and you were sticking out in my mind the past week or so....I hope everything is going well with your testing, etc...
My mom is 54 and had a major stroke last April, we are from Michigan and did travel to Stanford recently where she had both surgeries by Dr. Steinberg.  We can't say enough about him and his staff, they were absolutely wonderful and helpful and reassuring (which you need during all this).  We came into many roadblocks with the neurosurgeons here in MIchigan and felt it best to go to "the best in the country"...just something to think about.  Though I know MANY factors go into it all.    So decide what is best for you, everyone here is very helpful and willing to answer questions!

-Connie

Hi Tracy,
 Sorry you have to experience this set back.  BUT IT WILL GET BETTER.  Move though.  I'll give you my 2 cents.  We got Mark to Stanford from New York.  Yes it is the best place and it has the best people.  That's my opinion.  I happened to have the honor of meeting Connie and her mom and dad and watched Kathy go through the recovery period at the hospital.  I have seen some miraculous things happen at this hospital in the last 5 weeks.  These people are the best and I would not want to be anywhere else.  I know there are other Dr.s doing great things out there.  But if you can get here, Dr. Steinberg is the guy.
                              Ron