Part 2

Fast-forward to mid-August, and yet another of the weekly High Risk Clinic OB-GYN appointments with the County doctors and nurses to monitor her pregnancy, and they say 'we got Dr Steinberg's letter, and we will write you a prescription you can fill downstairs for the aspirin regimen.'

Huh?!

She requests and gets a copy of his letter and the prescription immediately, and discovers the following inaccurate statements made in it:
-Dr Steinberg did an extensive and thorough exam of her MM status.
-She is being seen regularly by his clinic.
-She suffers from regular severe headaches and takes Advil often.
-She has been on an aspirin regimen continuously.
-He has scheduled, and she has agreed to, an Angio the first week of November(!).
In the rest of the letter Dr Steinberg basically tells them that she is just fine, and that he wants her taking a baby aspirin once a day starting immediately!

OK, it seems wrong to me to prescribe a blood thinner to a woman only a month and a half from labor and blood loss, and my daughter feels the same way- but remember, these doctors know NOTHING about MM and are relying completely on Dr Steinberg for guidance here.

Laura DEMANDS that I immediately drive her to Stanford to retrieve her scans from them per the promise, and I do so.
But, NO, they refuse to even look for them, insist she needed to make an appointment, ask the nurses first, and get Dr Steinberg's sign-off before she can have them!
What!?
Listening to either logic or their own promises made is not on the agenda, and finally they VERY reluctantly call down to the nurses and one of them comes up to talk to Laura.
She tries very hard to tell her that no, they aren't saying the scans are lost, just that they have no idea where they are in the myriad locales and will have to hunt for them and call us back when they find them.
Recognizing that no way are we getting the scans today, I give her my cell and she agrees to call when they are hunted down.

Yes, they turned up two day's later, and we fetched them back.

The one bright spot in all this?
There is a CC at the end of Dr Steinberg's letter to VMC- to, of all people, Dr Micheal Edwards, Laura's surgeon at UCSF back in 1990!
We puzzle through the abbreviation after his name, and decide MAYBE it stands for Medical Clinic of Stanford University, and ask at the desk in the lobby if they have him listed- YES!
We hike the 400 miles to the far end of the new wing of the Children's Hospital, only to find out he is only in on Thursdays, and has JUST come on staff.

Laura and I stop in and see him later that week, and he concurs that Laura should NOT be taking the aspirin until after post-delivery recovery, and says a regular angio is insane and WAY too high risk, but that a newer scan that incorporates the features of an angio a CT and an MRI but is totally non-intrusive is the current tool, and he would love to see her and do the test and discuss the results with her afterwards.
Yay!


He says she is way to far along now for the radiologists to be OK with doing a scan until after the baby, so we are stuck.
Oh well, at least we have a reason...

He says that Dr Steinberg had stopped him in the halls and told him about Laura's visit and expressed astonishment that she was so healthy appearing and had had no problems so far-
seems they have a still-running difference of opinion as to which is better: Direct or Indirect Bypass.

Dr Edwards is taking over juvenile surgeries at Stanford, and Steinberg is keeping the adult surgeries- but Edwards is seeing his juvenile patients for follow-ups even after they reach adulthood in his mini-clinic in the new Cancer wing.


So....
Just the facts, all the facts, and let the chips land where they may folks...

S

Dear S.

I feel you...as I have experienced the same in other medical situations...with my B12 defiency...a friend HIGHLY recommended this endocrinologist...the best you could find...but my experience with him wasn't good. I won't go in details but had I not kept "at it" like you did...I would have died.  I still have nerve damage but thankful to be alive.
Then with Cara's MM...we were directed to one neurosurgeon who wasn't "concerned" about her situation....we were also directed to Barrows Institue for second opinion..they "wanted to see Cara"...never called us so we called and left msg...still no word.  I had read somewhere the Barrows was the best, most awesome for brain work.  Then I was deciding on which to go to Dr. Scott or Dr. Steinberg when a very close friend wanted me to go to Dr. Fredric Meyers at the Mayo in Rochester...her husband (who died of brain cancer) trained Dr. Meyers.   I decided to go that direction and glad I did...but I also read somewhere that people didn't have good experience at the Mayo.   I think your post is good for all to read because...it happens all the time even at the best place.  The best thing one can do...in my opinion is "keep at it" because you will be glad you did.   As I did just that for myself and am "VERY" glad I did.  Your daughter is "VERY" lucky to have you !!!!!  and so will your future grandchild...much luck and keep us posted....thank you for posting.

Warm Hugs,   CarasMOM

S,
     You are probably the first person I have heard of that has had a problem with DR. Steinberg and his office. I guess everyone is human and there is bound to be at least a few people that will have a bad experience with any Dr. at some point in they're career. Why did she go to Dr. Steinberg when she was unhappy with him to begin with, and not to Dr. Edwards who did the surgery. I personally would never go to any Dr. or neurosurgeon and not expect to pay, why did she not ask how much it would cost when she made the appointment knowing she had no coverage? I'm not real clear on the updating the chart after talking over the phone, no Dr's. office updates your files after talking to you on the phone or was that after he examined her, I'm a little confused about that. Anyway it stinks that you had such a bad experience, and my questions are not meant to be sarcastic. Maybe she should see someone else for any other follow up. When we went out for a follow up we waited a while in the office also but that seems to be in most Drs. offices, and you can tell by the clientele just from this website that he a very, very busy man. My personal opinion is someone that is as good at what he does and experienced at what he does as DR. Steinberg is to ME is worth waiting for. He saved my daughters life when other DR's. would have let her die. I understand were you're coming from. My daughter went to a doctor who was the head of the epilepsey foundation and the top notch most recemeded Dr. in the country and she was horrible and had horrible office manners and I ended up telling her off......and she misdiagnosed Mandy and as a result caused her a chance to prevent 4 major strokes which she will never probably 100% recover from. We all have our bad experiences in life especially with Drs. but I'm just sorry yours was with Dr. Steinberg because I think he is absolutely wonderful as a MM surgeon and as a MM specialist the best there is, again MY OWN OPINION. I wish you better luck in the future.
                        Nancy

Wow! Happy to be a guy in this case.  You certainly have your hands full.  I wish the best of luck and I will be following your story to hear about the new arrival.  My wife, who has MM, had two children before being diagnosed.  That was before the bypass, but it would be nice to know any information you have and will find out on what the doctors instructing her to do as far as diet, exercise, and daily routines.  I think it would be helpful for others and help my wife if she chose to have another child or if any kind of Oops might happen.  ;

It is interesting to hear about DR. Edwards and his chose of surgeries.  DR. Martin at UCLA worked at UCSF for many years and also prefers the same surgery as DR. Edwards.  I am sure they worked together for many years at UCSF. 

Take care

Wayne

I don't know if this information helps anyone, but I have two daughters and perfectly normal pregnancies before being diagnosed with MM.  I had two C-sections, which I have heard from several different places that it might be suspected that C-sections might be a contributing factor to MM.  I know that sounds crazy, but not only my neurologist, but some information that I have read also states that they are suspicious that multiple C-sections might have a link to MM.  Of course, I don't have any proof, but in my personal case, it could be true.  Just putting in my Laura

DJ wrote on Sep 10^th, 2004 at 9:06am:

So, no one has any thoughts on my question???

mpressions wrote on Sep 12^th, 2004 at 12:44am:

I can’t find one single word where anyone was hard on the poster Wayne. I think DJ’s question and point he is making is a valid one. Where does that information help someone? This being a support and information network, where do the issues he mentions in detail help anyone other then to purhaps harm this support and information system for one of the best and few mm specialist in the country, who has saved the lives of countless people? DJ’s and our soul purpose here is to help others and we’re here for that and need to keep that as our goal, not to try an harm anyone’s character or be hard on anyone. We all have had our issues dealing with this rare disease, but our goal here is to help others and I think keeping that in check is all DJ's question is hoping to do. That’s how I see it.

Mar

Hi Mar,

I did not mean DJ or anyones current post, it was more geared to furture post.  It was a little late at night and could have been more specific.  The questioned asked by DJ is in regards to a specific persons post and there will be post that would follow that will be positive and negative.  My point was to convey my thoughts and only my thoughts on what we should also consider when responding to DJ question, so the poster will not be discouarged.  You are right that is not the main reason that this site is here for, but I just think there has to be a medium somewhere. I felt bad about the comment I made in the beginning of the post.  It is sort of like when you are in school and you answer a teachers question in class (we all have had this experience in our life).  If the answer is wrong, the teacher will say, can anyone give me an answer on why we should not do what Jonny said?  Then response after response makes you sink deeper and deeper in your chair.  I know, we are all adults now, but I still feel bad.  Hey did someone just call me a wimp?  ; Anyway I am not being fair now. I am pulling people away from Dj,s question, who deserves to have it answered.

Thanks

Wayne

DJ,
I find this post helpful to me. I had thought I was being too sensitive about the bedside manner of Dr. Steinberg, but now I know Tyler wasn't the only one treated coldly.
I have to say Tyler did have a good experience with such a horrible thing. However, in comparing my experience with what others have posted on their experience with Dr. Steinberg, mine wasn't as good. I know Dr. Steinberg did an excellent job helping Tyler, but I feel he treats his patients differently depending on income.
So, to answer your question: This post lets people know that Dr. Steinberg isn't as perfect as he sounds. He is a good doctor, but he might treat some patients more coldly than others. This post shows the extreme end of his cold treatment, but there are other levels of cold treatment that some of his patients might experience.
Because of my income level I am used to treatment like this from doctors, so I'm not saying Dr. Steinberg is any worse than any other doctor out there. However, all other post made me expect a bit better from him, I now know patient treatment boils down to income level no matter how good the doctor is.
Just my 2 cents. I really had tried to stay out of this, but I was hurt by how sdl was being treated for posting their experience, since it didn't fit with what everyone else on here has experienced.
Rena

yes I think it should be out there because I am amazed at how many people "view" the posts versus how many "reply".   Many people would have trouble voicing that kind of post and I am sure they probably wondering they are the only one having a bad experience since all the posts have praised different doctors but none explain bad experiences...so therefore might be difficult to know if your "bad experience" with one doctor ...send to them personally...maybe not be what they need to hear....but seeing several posts that had bad experience would make people more open....and maybe request bad experiences personally further in detail if needed.

Have a great day,

carasMOM

Hi DJ. I am so glad you posted that about Dr. Meyer !!!  Brings up the point...would you have personally emailed me about your bad experience when you saw I was thinking of using him?  I hadn't heard from you in the beginning of my postings but figured you were busy but now I know.     It wouldn't have swayed me because our experience with him in June was very good in fact better than most of my horrible doctor experiences for myself.  And I am sorry you had that experience.   Thinking about that post....sdl probably felt so overwhelmed with all the things going wrong, and to be treated differently by that doctor when everyone else got better treatment that she had to get it out without thinking whether thats the type of post that should be there...but she did say...it may cause some to go on the defensive side....those things always do.  I wonder...if you had a post about problems with doctors.... we would find that every doctor on the good list may also be on the problem list...and yes making a first timer more confused and their decision to go with a certain one more difficult but then that is something they can "ask"..."how are you in patient relations?" (difficult to ask...yes...but sometimes it shows doctors that people will find out that they may treat one patient better than the other...especially on moyamoya.com.  We are not out to harm them but to continue to make them more human, too.

Thanks DJ.   

carasMOM

I don't think asked how is your patient relations of any Dr. they'll say I suck I treat people like crap, I'm sure they all think they are good with the patients. Getting an honest answer on that is not gonna happen. ANY NEGATIVE POST about ANY DR. to answer a question is not gonna help ANYONE coming to this site for help. Like they say if you can't say something nice don't say anything at all. If they want to know what people think about a Dr. go to the link where people can post they're experience. This page is to HELP PEOPLE OUT.
                         Nancy

I'm all for supporting anyone for making the best choice for their situation and apologize for going off the track which was not my intention..sorry.

thanks,  carasMOM