S,

Not sure I exactly understand what the question is with this one?

Are you saying your daughter was diagnosed with moyamoya in 1989 and ended up going to a different medical facility for a "more aggressive surgery"... but it didn't happen?  It did happen?

Obviously, I have no idea what you sent to Dr. Steinberg via email, but for 99.999% of the folks on this board who've emailed him for advice on moyamoya, I think I can say he's responded in a VERY timely manner.

sdl wrote on May 14^th, 2004 at 3:59am:

If you're trying to bring up a "personal beef" between your family and a couple of doctors in the San Francisco area from 14 years ago, this isn't the place to do it!  I guess I just don't understand why someone would use this site to email Dr. Steinberg on something other than a diagnoses, or a second opionion, and then ask us why he hasn't emailed her back in a timely manner?

Am I the only one confused here???? Or am I just being over-protective?

Edit:  Ok, let me back up here...  SDL, it was brought to my attention that I was possibly missing the point that you were seeking long term follow-up for your daughter from Dr. Steinberg.  If that's the case, I completely apologize for being defensive and not catching the point when I originally posted.  Just trying to keep an eye out for the family.

I emailed Dr. Steinberg this past Monday about my husband's case.  He emailed me back on Tuesday and his nurse Teresa emailed me again on Wednesday.  They are going to give us a 2nd opinion from what our neurologist says.  He's quicker to get back to us than our local doctors!  Awesome!

Hey I thought it was just me it made no sense to me neither. 
                             Nancy

Whooff!

OK, I was a little vague, since I did not really state my daughter's (Laura) full case history, nor did I spec WHY I was writing to Dr Steinberg.

Also, I only included the past reference as I was AFRAID it might be relevant to my personal response times..... BUT I was hoping NOT.

So....
Let's be a little clearer:

My name is Seaneen, we live in the SF Bay Area, my daughter Laura was diagnosed at age 5 in late '89 with MM by her pediatrician after he ordered an MRI to confirm his suspicions (yes, the man also walks on water in his spare time ) and since he worked in Palo Alto and also taught classes at Stanford that was the first stop for us.

As they did not AT THAT TIME have a full-blown program, and only a few patients they were trying alternative/medicine-driven therapy on, our pediatrician chose to send us on to UCSF and their Chief of Pediatric Neurosurgery.
It seems their Chief was considered an experienced expert on MM, having written the teaching manual on the subject and having done over 50 surgeries at the time (he had also JUST proposed a different much less intrusive/no long-term-risk surgery and it had been published the month before).

Our daughter had suffered a 'small' stroke during her diagnosis, and some TIAs before surgery (modified EDAS bilateral) could be done in April/May '90, but had fully recovered in all ways by her one year appointment.
This surgeon is no longer at UCSF, in fact I believe he has retired since I cannot locate him.

They were much more paranoid about minor symptoms back then, and put her on Tegretol (an anti-epilepsy drug) for and 'indefinite' time; I weaned her off of it by 3rd grade, and her learning and energy level increased to normal ever since.

My daughter is now almost 20 years old, and we suspect she is pregnant with her first child; I know that there is generally no concerns over this, but since she has not been checked by a neurologist or neurosurgeon since one year post surgery, and has had only one additional MRI at age 12 that was compared to her post-surgical MRI with no changes noted, Mom is worried that maybe, just maybe, we should get a local expert's opinion on her own personal physical condition and risk factors.

So, I do current Net research, find many varying sites, like this one for it's current data and heavy user input, and decide our best bet is to contact Dr Steinberg, since it seems he is now on the same track her surgeon was on back in '90.

Since everyone here seeemed to have lightening-fast replies noted, I became concerned when I heard nothing for 4 days during the week and posted my note for input from those in communication with him on non-surgical issues.

My only concern is our Ped is more like a Marine Drill Sergeant towards adults and collegues and has ZERO patience for ANYTHING as well-
I was worried that he had totally rubbed Dr Steinberg the wrong way over our daughter's case-  I have not actually seen or talked to Dr Steinberg since our initial appointment in '89.

Hope this helps clarify my reasons for posting.

Seaneen

PS
Sara, who did your surgery back then? Were you in the Bay Area?!
I find it just amazing, since 'one in a million' seemed to be being too conservative back then! 

SDL,

Hi, Its Sara!

I had my surgeries in Houston Tx. My doc here conversed with Dr. Scott about the surgery. I was the first one the Dr. Laurent did. He is now the head of pediatric neurosurgery at Texas Children's Hospital in Houston's Medical Center.

I am surprised to hear your daughter has not had ANY follow-up at all. I don't have as much as the others on this board. But, I definetely call my doc from time to time with questions. Has your daughter not had ANY problems? If not, that is great!

I have sent you a few private messages. Have you gotten them?

I would love to help with any questions about the situation your daughter is facing now, being pregnant. In my opinion, she REALLY needs to see a neurologist before she delivers. With pregnancy and MM there are concerns.... Blood pressure, blood clotting... and others. Please promise us you will be sure and take her to a neuro doc....

Take care and write me back should you want to!

Sara

Hi All, back from vacation but real busy, so this will be brief.

Yes, the name is indeed Irish.   

Nothing as yet from Dr S- will consider calling the office since it is local to get some advise over the next few weeks...

We are in SJ too. The advantage is that it's a big metropolitan area with lots of medical resources- the disadvantage is that it's VERY expensive to get quality care... and my daughter does not have insurance and MediCal is being very difficult about coverage...

Sara, Laura said she meant to write you via email, but was swamped watching out for her little sister for me this last week- hopefully soon, but she can be an airhead 

Thanks for all the input guys, and I'm a tough little cookie, so no worries about any misunderstandings at first- I can take it!  ;
No really, I know no one meant anything by it, and I take VERY little personally 

S