After reading a bunch of different topic on here, I was wondering if......when have you all contacted Dr. Steinberg for a second opinion....

Right now, I have the results (and slides) from my MRI and the report from a CT-Angio (CT with Tracer...and, I can get the films). Should I be talking to Dr. Steinberg now or after having the Angiogram.

Thoughts? Ideas?

Thanks a million,
Greg

Hi Greg
Being in Australia, I haven't dealt with Dr. Steinberg, but I would be getting all the information to him now as, what you have (the ct-angio and MRI) will already  tell him if you have MM. An angio will just confirm it.
That is my 2 cents worth
Moira

Hi Greg,

I too was not Dr. Steinberg's patient, but my  [smiley=twocents.gif] is that I would recommend you sending whatever tests results available to him now, and then send the angiogram when that becomes available.  The sooner he is able to reivew your films, etc., I feel the better. Of course, this is my  [smiley=twocents.gif]  ;).

Hope all goes well with your results and angiogram.  ;)

Take care,
SHan

Hi Greg,

My brother Kevin (Cubbie) is a patient of Dr. Steinberg.  We live in Ohio.  Kevin was diagnosed in Ohio with moyamoya but only after a significant stroke. I was told to take him home and to let him live out whatever life he had left. NO WAY was I going to settle for that.  I sent his films (including angiogram) to Dr. Steinberg.  Within 72 hours, I received a call from Teresa, Dr. Steinberg's nurse, confirming the diagnosis of moyamoya and that Kevin needed surgery on both sides and needed it soon.  Kevin is probably an extreme case and has also been labeled "unique" in that he also had a dissected right upper internal carotid artery at the bifurcation.  

Kevin had two STA-MCA direct bypass surgeries at Stanford by Dr. Steinberg in May of this year.  Kevin is doing wonderfully.

Dr. Steinberg is one of two well known moyamoya specialist in the United States who has significant expertise in moyamoya and has devoted his life to moyamoya. He is a brilliant surgeon and has perfected the surgeries over time. You can go to the Stanford website and see his credentials.  He has also done, probably by now, over 200  moyamoya surgeries not to mention all the other brain surgeries he does.  I think it goes without saying had I not sent Kevin's films to Dr. Steinberg, Kevin would not be alive today. We are eternally grateful to Dr. Steinberg and Stanford for giving Kevin a second chance at life.  After all that, I personally would send the angiogram although the MRI can give him information on the moyamoya, the angiogram (IMO) signs, seals and delivers not only the diagnosis of moyamoya but to what degree.

l'm sure you will hear from other Dr. Steinberg moyamoya patients and their experiences with sending their films and which films to Dr. Steinberg.

Greg, best wishes to you and please keep us posted.  I am anxious to hear what Dr. Steinberg recommends.

Hugs,

Lore          

They will do an angiogram at Stanford, even if you send them films of another one.  I would recommend sending your films now, before you have an angiogram.  I would suggest you have as few angios as possible---they are terrible!
Stephanie

Stephanie,

I didn't have an angiogram done again before surgeries.  I had my angiogram done done a few months before I went out for surgeries and they didn't have another one ordered when I got out there for the surgeries at Stanford.

Greg - I would go ahead and send out your scans now.  It certainly woudn't hurt.  And they will be able to tell if you have it with the MRI/MRA.  And then when you get the angio done, then you can send those out as well.  Teresa is very good about getting back to people with the diagnosis in  timely manner.  I heard back from her within 72 hours also.

Michelle

Hi Stephanie,

I was told that angiograms should be done only if necessary, like you mentioned...before surgery.  The risk factor I was given was 1 in 1,000.  Anyway, if he does have an angiogram in his hometown, and if he is able to see Dr. Steinberg right away, would he still need to do another one?  I guess if MM is progressive, and depending on what stage we're all at when we're diagnosed, then I understand that things may change if an angiogram is done too far in advance of a surgery.  Am I on the right path?  [smiley=huh.gif] I guess I'm wondering, how long are they good for?

Take care,
Shan

Greg-
I'll just second what Michelle said.  I had surgery with Dr. Steinberg and they did not do a second angio at Stanford (not until my follow-up 5 months post-op).  I sent him my films after having an MRI/MRA and Diamox Spect Scan.  I'd send them now.  Worst case scenario they say they need more info and wait for the angio.
Hugs~Chelsie

    Hi Greg,  Tom G here from Howell.
You can send your scans to Stanford, But you need to become informed about the 2 types of bypasses that each place specializes in.
Dr Scott in Boston and Dr. Connolly in N.Y Specialize in the EDAS indirect by pass surgery. Dr Stienberg at Stanford specializes in the direct by pass surgery.  
    There are advantages and disadvantages to both types.I know from my own research that the direct bypass is a Much more invasive and risky procedure.  
Yes the results are immediate but this surgery should only be done if your arteries are severly occluded and immediate results are necessary.  Otherwise why take the risk ?

Think it over Greg while I go put on my body armor and brace for the attack.

Take care all of you!   Tom G  

Thank you all for the responses.

Unfortunately the only things I have at home are the films from my MRI/MRA. However, once I finish with this message, I will be calling my neuro and getting everything else...then a message of to Dr. Steinberg.

Thanks again....and I'll keep you all in the loop.
Greg

Hey all:

Just want to clarify (contradict?) TomG (no need for the body armor - everyone has their opinion, this is just mine).  

Firstly, Dr. Steinberg does BOTH indirect and direct depending on what he sees fit for the patient.  Furthermore, based on my research, direct bypass is no more riskier than indirect.  I had to do this research b/c when Dr. Connolly recommended no surgery for me, Dr. Scott and Dr. Steinberg did - but Dr. Scott recommended indirect (as he only does indirect) and Dr. Steinberg recommended direct (although he does both - in my case he did not think indirect would be beneficial).

So I had to decide which was the better alternative.  The impression I also got was that indirect is not always beneficial for adults b/c it doesn't always take.  This is why it is primarily used in children b/c it takes longer to develop (and is used in adults depending on what stage they are at with moyamoya).  

I was also told by both Dr. Scott and Dr. Steinberg that the biggest risk in either surgery is being under anesthesia for 7-8 hours, as it would be any surgery where you are under for that long.  

We too had heard from Dr. Connolly that direct is riskier as the immediate blood flow could be dangerous, and cause stroke.  We brought that up with Dr. Steinberg and he indicated that in all the direct procedures he's done (has Dr. Connolly done any direct?  I'm curious), he has not seen that happen due to the immediate blood flow.  

That being said, I believe Greg you should get as much information as possible.  If you send ur films to Dr. Steinberg, and he says to do direct bypass, you need to ask him as many questions as possible as to why, pros and cons, benefits, downsides, success rate, etc.  And you should do the same if someone recommends otherwise (no surgery, indirect, etc).  

Trina

Definitely no body armor needed,  Tom!  As Trina said  everyone has their own opinion . . . .

Trina's input is invaluable though, because she has met with both doctors and had lengthy discussions with each of them.  She weighed their opinions in regards to her particular case, and proceeded accordingly.  Every case is different, so it is important to keep that in mind.  

The mindset I've never understood is that of "the collateral vessels are doing the job just fine, so there's no need for surgery".  My impression has always been that this is why MM patients are at risk for stroke, because the collaterals are not equipped over a long period of time to handle the volume of blood needed to supply the brain.  

Greg, I'm sorry if I've added to an already confusing situation for you.  I agree with the others' posts - send whatever you have to Dr. Steinberg.  He'll definitely let you know if he's able to give an opinion from what you send, or if he needs more.  Let me know if you need help with contact info!

Warmly,
Jill    

It's great to hear/read what others have heard about MM... So I'd like to share what I've been told by the medical professionals I've spoken to.

- There are more options for children regarding surgery; however, children tend to have "indirect" procedures more often than normal.

- Direct bypasses are the "preferred" choices for adults; however, each surgery must be looked at on a case-by-case basis.  I know of adults who have had only "indirect" surgeries..and I myself had 2 direct and 1 direct bypass.  

There's so much factors that have to be considered...I'm guessing the amount of occlusion, how progressed this disease is, the available "good" arteries that are available for a bypass, etc. would all play a factor in what type of surgery one would need.  For me, I recommend sending films, etc. to as many MM specialists you feel comfortable with...then review all of them and make your decision from there.  ;)

I think, like Trina had mention, there's other things like anesthesia and just the whole surgery iself (like any other surgery) that has a great amount of risk involved.

I had heard some jingling in my pockets, so I thought I'd throw in my  [smiley=twocents.gif]... ;)

Take care,
Shan
p.s.  HA!  Tom...I didn't catch on to what you were saying about the body armor until just now!  [smiley=laugh.gif]

Greg,
            My daughter Mandy's story is alot like like cubbie's, thank God we had the good sense to get that 2nd opinion from Dr. Steinberg or Mandy would not be with us. Direct by-pass to me just makes good sense instead of waiting 6 months to see if surgery works all the while being able to still have a stroke. I understand every surgery is not for everyone and everyones brain situation is different thats why there is different surgerys used. We were told in a Phila. hospital that the direct was more risky and HIGHLY HIGHLY not recommended only to talk to Dr. Steinberg and find out that in fact it is not, and the sucesses rate is wonderful, not that the indirect is not sucessful. It just makes good sense to me, if your not at more risk to get something thats works faster than slower go with the faster. Dr. Steinberg will know what is best for you be it a direct or indirect, he will definately know what you need. Send those films asap and he will let you know weather to get an Angio at Stanford or not. In Kevin and Mandy's case I'm sure the fact that major strokes had already occured the direct by pass is what made more sense. My opinion is to send what you have and send the rest later if need be. This is all just my opinion.
                            Nancy

Greg,

I have a little bit more to add to my earlier post.  When MM is suspected and an angio performed to confirm the diagnosis, it is imperative that studies are done on both the internal AND external carotids.  I've learned that many hospitals only look at the internal carotids to confirm the MM.  For instance, when Stanford does an angio, they do studies on both the internal and external carotids to look at potential donor vessels as well as confirm the diagnosis.

As other people have said, there are many factors involved for each individual patient.  If you have an angio scheduled though, it would be great if you could make sure they are studying both sets of carotids.

Just some more info for you to digest.  Good luck as you move forward with this process!

[smiley=hug.gif], Jill

::)Sorry Greg and Trina my friend (Ireally mean that)
First I would like a quick poll (and I don't mean a fast Polish runner) [smiley=laugh.gif]

Has anyone in our MM family had an indirect by-pass done by Dr. Stienberg? [smiley=huh.gif] (just curious)

I have talked with Dr Connolly from NY, Dr Oglvy from Boston and my brother and his wife. (he is a pediatric thorasic surgeon and his wife is a Neuro anestisiologist)

  Yes there is the anesthesia risk in both types of bypass but there is no question that in speaking of the surgery itself, the direct is far more risky.  It involves digging into the brain, finding and clipping off the artery then cutting the artery then sewing the temporal artery to the corotid artery.
  In the indirect the brain is not touched at all except to lay the temporal artery over it then close.

Don't worry trina I wont mention which method lasts longer but maybe Renee can tell us how long her EDAS has lasted thus far.

  Oh well my EDAS is a little over a week away I hope that I'm not putting the wammy on myself ::)

Take care love you all     . Tom G

Hi Tom,

Off the top of my head, I can think of at least 3 patients who have had the indirect surgery by Dr. Steinberg. Will check the log I keep to see if there are more, and let you know if the # is different.  (Of course, this is just from the surgeries I've attended, not a complete reflection of all of Dr. Steinberg's surgeries.)

No wammy coming from here, just discussion, which is good . . . .

Jill

Hi, TomG, Greg (and everyone else! ;) )

To answer Tom's poll, my daughter had bilateral indirect bypasses done by Dr. Steinberg back in March -- she was only 18 months old, and at that age indirect is the only option, because the arteries are just too tiny to do a direct bypass.

Her angiogram a couple of weeks ago looked awesome.  Her grafts took wonderfully, and there is all sorts of new blood vessels growing throughout her brain  ;;D  We couldn't be happier.

For Daphne's surgery, Dr. Steinberg seperated her STA from her scalp, with a cuff of tissue around it still intact, and laid it on her brain.  He then folded the dura in, so that the vascularly dense side was placed against the brain.  I'm not sure, but this (the dura folding) might be something that is unique to Dr. Steinberg.

I also believe I remember reading that the direct bypass surgery is more techinically difficult and requires more time under anesthesia, so it is a more challenging procedure, although having an experienced surgeon and anesthesia team makes a big difference.

And, finally, I agree with the other responses... that Greg should send what he has to Dr. Steinberg now.  The sooner you get the ball rolling, the better, and after talking with Dr. Steinberg, you might decide to get the angio done at Stanford.

Good luck!

Jenny

Hi Everyone - I am jumping into this discussion and here's my 2 cents worth. As said everyone has their opinion and from my observations from this site the people who have had the indirect bypass usually experience more problems. I had 2 STA-MCA Bypasses and would not have gone for any other options. As a result of that surgery my blood flow was established straight away and I now live a very active full life, which I don't believe would have happened if I had the indirect surgery. My neurosurgeon has basically told me to only see him if I experience any symptoms and my next MRI will probably be in 5 years. I am a gym junkie now and have since had a baby after my surgery. But I respect that everyone is different and the damage they have sustained from MM is different but I think that if you are going to undergo brain surgery, the risk is there anyway so you might as well go for the method that guarantees the results. Don't worry - I have just put my hard hat on too as I am sure that you may disagree!!
Moira

Hi all  [smiley=hiya.gif]

Wow, I didn't think that I would spur such a debate. Thank you all for the information. Luckily I logged on earlier in the day and started to see the varous responses.....YOU HAVE ALL CONVINCED ME.

Late this afternoon, I placed a call to my Neuologists office to get copies of the various reports and to inquire what test films he has (seeing that I only have my MRI/MRA films). After leaving that message, I immediately called the test center who performed my CT-Angio and the two hospitals that performed my TCD, SPECT, and EEG. I left messages with the various assistants/nurses to inquire about getting addtional copies of my films and test reports.

Hopefully they will respond within the next few busniess days and that I can get things rolling next week.

Thank you for the kick in the butt that I needed. I'll keep you all posted.

For all of the other threads...I need to reread these about 10 more times to digest.

Thanks again.....need to run, as it is after 8pm and Survivor is on.

Regards,
Greg

Hi Greg,

Hope tonight's episode of Survivor is good. [smiley=laugh.gif]

I simply want to let you know that Kevin (Cubbie) and Mandy's surgeries where in an effort to save their lives. Meaning they both had had significant strokes. They are probably two of the more extreme cases. Just to give you an idea, Kevin (Cubbie) had a minus 2 blood flow on the left and only a plus 15 on the right.  At the time, I could tell he was "brewing" for another stroke as his ears were purple, skin gray, speech and balance worsening.  Dr. Steinberg informed me Kevin's arteries (both internal and external) were absolutely horrible.  For these reasons, direct bypass was the only way to go- period. Meaning in an effort to save his life. He had gone undiagnosed for several years. My point is what the others have said and that is every case is different.  There are so many factors to consider.  Although Kevin had had an extensive angiogram (lots of pictures and I mean lots of pictures) in Ohio, Stanford still did an angiogram. I was sitting outside the angio room and could hear the doctors say "WOW, look at that"!  Also, Kevin donated samples of his arteries to research as he felt that was his contribution to mankind. Before going to Stanford, Kevin was not expected to survive.  So, you can see why I am so grateful to Stanford and moyamoya.com for giving Kevin a second chance at life and why I believe you should leave no stone unturned. Education is the way to go and like Trina said, ask any and all questions of any doctor before having such a procedure.

I simply want to see you and others get the proper treatment so you don't have to be or become an extreme case like Kevin.  He had no time for an EDAS to take.  He needed blood flow now.  He got a plus 42 on one side and a plus 46 on the other.  That's a tremendous amount of immediate bloodflow.   He did not stroke as a result and if you could meet Kevin today, you would be amazed that he was ever in the horrible condition he was prior to Dr. Steinberg's surgical intervention. Just ask Jill as she was there when Kevin had boths surgeries.  And to think other neuro's sent Kevin home to die. You have to be your own advocate. You simply need to do what you think is best for you.  I'm not a doctor and like I said, every case is different. I continue to read and educate myself as best I can.  I believe you are working hard to educate yourself about moyamoya and available treatment options and my hat goes off to you.

Additionally, I believe, and Jill may be able to verify, that Dr. Steinberg may have done both direct and indirect on the same individual....meaning direct on one side and indirect on the other?  Like I said, I'm not sure about this.  Jill may or may not know if this is correct.      

Only the very best to you Greg in your journey for the proper moyamoya treatment for you.

Keep us posted.

Hugs,

Lore    

Hi All:

Firstly, Tom...thank you for bringing your opinions to light.  I am glad that we're getting so much input and involvement in this peaceful discussion.  I think it's important for everyone to see that this disease can bring about various opinions & procedures of treatment by various doctors.  

That being said, I respectfully disagree that direct bypass is a riskier procedure.  I think Jenny said it well when she pointed out that if you have the right surgeon and teams in place, a direct bypass is no greater risk than indirect.  My concern is that you have continually heard that from one surgeon who does not necessarily have the experience of doing a direct bypass (and as we all know, there are no randomly controlled studies to confirm that one is better than the other - inside joke ;) ).  When I went to Dr. Scott, even though he does not do direct (primarily because he does children), we asked if he thought there would be any cons to getting the direct procedure.  He felt at my stage, that I could benefit either way and that the risk was the same.  

I too can think of one adult person (who's probably on Jill's list) who had indirect with Dr. Steinberg, and I knew of Daphne.  I don't know the exact numbers as I know they've changed, but Dr. Steinberg also does both children and adults (last I saw it was about 70% adults, 30% children) and my *guess* would be the majority of children had indirect and the majority of adults had direct.  But again, he reviews each case individually.  This is also not to say that EDAS isn't successful in adults - Shari's a great example of that! ;)  I'm just saying that every individual case is to be reviewed and both direct and indirect are viable options depending on the case.  

Jill, I agree with you that I don't understand the mindset that if the bloodflow is good, then one should not have surgery.  I did great for 33 years, and then a vessel hemorraged.  I was lucky that I did not have lasting effects, but what if did?  I still had that vessel hemorrage when my bloodflow was good.  Even though my bloodflow looked good, I was stage 4.  Surgery isn't a guarantee but the risk of either surgery in my opinion, is worth it compared to the time bomb we could be living with.  

Again, I want to emphasize that everyone is different AND has different circumstances (i.e., maybe everyone can't go out to have their surgery by Dr. Steinberg).  But he is available for free opinions, and anyone who is going for surgery as treatment for moyamoya should go to as many experts as is feasible.  

My  [smiley=twocents.gif],
Trina

Hi everyone!
This is a lively and extremely interesting topic.  I just wanted to clarify my statement about having the angio. done at Stanford.  After sending my films to the Stanford team, Teresa, as always got back to me very quickly.  I had been given an angio around 4 minths prior, but Steinberg was unsure if the MM had "spread" to my left side.  Instead of performing an angio in North Carolina to establish if it had "spread" Stanford said they would do it.  As Jill explained angios need to be performed in a certain way and Stanford wanted to ensure this would happen by doing it themselves.  Others who did not have an angio done at Stanford, they must have been satisfied that you definitely needed surgery?  Who knows?

Just to add my opinion, I would think that the direct would be more risky.  I am basing this on the fact that two vessels are being cut and then sewn together.  It seems more likely that a bleed could come from this graft. But this risk would most likely happen after the surgery, not during. When you read the info on the surgeries, the highest risk during the surgery is in keeping the blood pressure regulated while under anesthesia for so long.  I worship my anesthegiologist as much as Steinberg!

Take care all,
Stephanie ;;D

tiomasai wrote on Sep 22^nd, 2005 at 9:34pm:

This is also not to say that EDAS isn't successful in adults - Shari's a great example of that! ;)  I'm just saying that every individual case is to be reviewed and both direct and indirect are viable options depending on the case.

Yes, I was a 29 year old (at the time of my surgeries) in a children's hospital!!!  ( [smiley=laugh.gif]).   Gotta love that!  Sorry....tangent.....

Anyway, this is a very interesting thread and I wanted to add my two cents in here....

The determination of which surgery, direct or indirect, is done is really the culmination of a lot of factors.  One of those factors includes what the condition of the patient is before the surgery...which is why this is such an individualized choice for your doctors.  I was lucky, I was in a position that I COULD wait to have the blood vessels grow into place as a result of the indirect surgeries that I had.  In other words, I didn't NEED the immediate results that others needed.  Although I did notice some immediate differences immediately after my surgeries.  Other patients do not have that luxury and need the benefits that the direct bypass provides.  Don't get me wrong, MM is a progressive disease - it will get worse, not better.   But the immediacy for surgery varies among patients.

Lets face it, brain surgery is risky no matter what procedure is being done!  There is always a risk of subsequent stroke and/or other complications.  I did have a stroke following my second surgery.  But these are the benefits and risks that you need to consider when making your decision....as Lore said, you need to be your own advocate.  Hopefully, we've provided you with information that you can use to arm yourself with questions that you can use when you meet with your potential surgeons.  

My thoughts remain with you....

-Shari

Hi... after reading Lore's post, I also wanted to add that Daphne was also in a very serious condition before her MM surgeries.  She'd had two, major strokes, and had been sent home to die with hospice care from Philadelphia.  She also had a very serious seizure disorder since she was three months old (Dr. Steinberg and Teresa think Daphne had MM in utero)

As I mentioned, she couldn't have a direct bypass because of her age, but - for her - the indirect prevented further strokes, and has dramatically restored blood to her brain.

Just kind of reiterates that each type of surgery has its unique benefits/risks for each individual, and that is why having an experience MM specialist is so invaluable.  One thing that we liked about Dr. Steinberg was that he had experience with both direct and indirect (and even omentum transposition, which is just fascinating IMO)   :)

Jenny

This thread is the best example in my opinion of all the discussion that we've had as to why you need A MOYAMOYA SPECIALIST so they know what the proper surgery for you is. Everyone's experiences and opinions explain why in a nut shell.
                             Nancy
                                           
                     

Hi everyone,

I just got in contact with Dr. Steinberg again for a second opinion about my MM that was found in my neck. My neurosurgeon tells me to wait and see what happens in six months and he is scared too do  angioplasty on the blockage. He is scared I will have a stroke on the table. The blockage is 80%.  He also says that I have good blood flow on my left side the side of the blockage and I will be okay. If he does surgery it wont take. So is it better for me to wait and see or go ahead and get Dr. Steinberg to give me a second opinion?

I decided to get the second opinion. If he says for me to have the surgery. My parents and I will fly to Stanford for the surgery and if not then I will just wait and see. Anyway, without the second opinion I am really scared. I have been lucky I haven't had a stroke till now. I want to hopefully keep it like that.

I don't know what else to do?

yassi

Hi Yassi,

I think you’re wise to get a second opinion with Dr. Steinberg. It seems to me, (IMO) to be the best and smartest thing for you to do at this point. #1- He’s a MM specialist. He will know the best route for you, weighing all the factors in your individual case. #2- The fact that MMD is a progressive one, you’re right, you should be concerned with the possibility of a major stroke if you wait. Dr. Steinberg will tell you in his expert opinion, if he thinks it wise to wait, and if surgery is an option in your case. #3- You have a large group of people from around the world here, praying for you and giving you support with what ever your decision is. You’ve weighed your options so far, and decided to seek another opinion from one of the best there is, again... wise decision, IMO.

As far as the risk with the different surgeries (direct/indirect) IMO, it's improper for us to say which is a higher risk, because either the direct or indirect methods, it's still brain surgery… there’s a risk no matter how you look at it with all of them, and each and every case is different, with different factors involved with each particular individual. IMO, it's for a surgeon who has experience with each method of surgery and experience with MM the disease itself, and the specifics of your individual case, to say which surgery is best, or riskier, not us. That’s what a second and third opinion with an expert is for, to weigh the facts of everything involved (your specifics) and all the options available to you and decide together what is your best plan of action for you to manage this rare disease.

You'll be in my thoughta and prayers. Please keep us posted.

Mar

Hello all,

My wife was diagnosed on December 2nd.  I got on this website and read many opinions that same night.  I did my reasearch to see who has the most experience with MoyaMoya.  Everything always pointed to Dr. Steinberg and his staff at Stanford.  We have an appointment with our family doctor tomorrow to see what he found out about MM and who my wife should is getting referred to.  Yeah right!!!!!!

I emailed Dr. Steinberg on December 7th and he responded that same day.  Teresa emailed me on the 8th.  I picked up my wifes MRA report and films on the 8th and they were in Dr. Steinbergs hands on the 9th.  Kathie is scheduled for surgery on the 10th and the 17th of January.

Do I know what type of surgery Kathie is having??  Uh, no.  All I know for sure is Kathie is at high risk of having a stroke and I am not waiting around to see what happens.  Waiting is not an option.  I know I will never have to say, "I should have been on top of this qucker.  I should have sent Dr. Steinberg Kathie's report and Films to him for his opinion (especially since it is FREE!!)."

This is the BRAIN we are talking about.  Indirect or Direct bypass means nothing to me.  Having my wife with me healthy and stroke free is what is important.  Leave it up to the EXPERT to decide.

I wasn't sure about going around my family doctor to find out what can be done about my wife.  I was scared he would be mad or upset.  Well, whatever.  I saw it as my duty to get my wife the best care as quckly as possible.

I'll be real blunt here.  It would be very FOOLISH to not send Dr. Stenberg your report and films for his EXPERT opinion.  Come on people it is FREE.

May God be by my wife's side all the way through her recovery.  May God be by Dr. Steinberg's side and all of his staff and keep guiding the hands of those that saves people's lives.

Jim

Hi Jim,

I'm so glad you sent Kathie's films to Dr. Steinberg for an expert second opinion.

You have worked hard to educate yourself and to seek the best care you could find for this rare disease for Kathie's well-being. I applaud you for all your efforts.

I too am a Dr. Steinberg and Teresa fan. I  have told the story over and over again. When all doctors wrote Kevin off and sent him home to live out whatever life he had left, Dr. Steinberg accepted Kevin as his patient and operated (2 STA-MCA) direct bypasses in May of this year. We are eternally grateful to Dr. Steinberg for giving Kevin a second chance at life.

You know Jim, you made a good point when you mentioned about this is your brain. When I was looking for a doctor who would simply look at Kevin (with hopes they would at least attempt to operate) I had "life saving" and "we don't have much time" on my mind and it didn't even dawn on me, at the time, about the brain being involved. I just knew Kevin needed help and he needed it now. I felt if a MM specialist was willing to take Kevin on, he probably knew what he was doing. I was desperate to find someone to help Kevin. Once I saw the Stanford MM program from start to finish I knew I had not only found a brilliant and  confident doctor who was willing to help Kevin, I felt I had found heaven. In restrospect, I did find heaven. As you mentioned, Dr. Steinberg will render an opinion for FREE. He is not only a superior surgeon, he is such a wonderful, caring and humble person. Wish there were more doctors like Dr. Steinberg.

As far as the type of surgery, Dr. Steinberg will decide that and answer any questions you may have. What's nice about going to Dr. Steinberg and Stanford is they have an entire team of medical professionals from the testing to the surgery (Dr. Steinberg) to the anesthesia and follow-up who are devoted to moyamoya and see it every day and have everything in place and it runs like clockwork. It is truly a complete moyamoya program from start to finish.

Kathie is in excellent hands and I am confident Kathie will do just fine. I have always said, if Dr. Steinberg could help Kevin in his physical state at the time, IMO, Dr. Steinberg can work miracles for others as well.

I will keep you and Kathie in my thoughts and prayers as you prepare to go to Stanford.

Jim, keep us posted and let us know how you and Kathie are doing.

Also, let us know what your family doctor found out about MM.

Hugs,[smiley=hug.gif]

Lore

   

Hi everyone,

I just got back from the hopsital again. It just seems like I am there every week. Last week I went in because I had real bad pain in my leg. My feet were burning and I thought I am having another TIA.  The doctors thought I had a blood clot and they did ultrasound and found out everything was fine. They sent me home with Talwin and Neronton. I am okay now.

Today, I go to my primary doctor because I have real bad headache. I was sensitive to sound and light. I walked into the doctors office with sunglasses and a winter hat. The doctor comes in and says that I smell like I am dehydrated 30%. So he says I need IV fluids. They cannot start an IV there because I am so dry and they send me to the ER. They start one in the ER and within an hour I feel much better.  

My mom and the doctors think I am scared because I haven't heard from Dr. Steinberg yet. Am I really going crazy or  am  I just scared. When I go to sleep I am scared I will have a stroke. I feel like my arm is tingling and my hand is going numb. Can someone give me some hope about my situation.

I sent my films to Dr. Steinberg but he is not in this week. My nerves are shot!!!  :'(  :(  [smiley=confused2.gif]

Oh gosh, Yassi, I'm sorry you're having to go through this.  I wish I could offer a professional opinion but, as I am not a doctor, I can't.  Being dehydrated as a MM patient, though, isn't good.  I'm glad you were given fluids and feel better, and would suggest that you not over-exert yourself with much of anything at this point.  

I am sure you'll be hearing something from Dr. Steinberg as soon as he is back next week.  The waiting must be difficult, and of course you're scared!  Trust what you're feeling with your body - you're the only one who can possibly know how and what you're feeling.  And certainly don't let anyone tell you you're going crazy!  This disease isn't something to mess around with, and you've done the right thing in seeking the opinion of an expert.

Hang in there, try to relax over the holiday weekend, and know that there definitely is hope!  We'll be thinking of you, and will add you to our prayers.  Please keep us posted as you are able, o.k.?

[smiley=hug.gif], Jill

 

Hi Yassi,

I'm sorry to hear of your recent ER visit. Dehydration is often mentioned in posts. It is very important to keep yourself hydrated. Drink lots of fluids. I too am not a doctor I am just speaking from my experience with Kevin.

You are not going crazy. It is only natural for you to feel anxious about hearing from Dr. Steinberg. I'm sure you will hear from Dr. Steinberg as soon as he returns. Like Jill mentioned, try to relax. Take a deep breath and know that you will hear from Dr. S. soon and your MM family is here to offer any support we can. Like Jill mentioned, I too am not a doctor so I can't offer a professional opinion.

I realize it is sometimes easier said than done but being stressed out isn't helping matters. The waiting and anticipation is most likely working on you. Again, it's only natural and you have done the right thing by seeking immediate medical attention. You mentioned you felt better after receiving the IV fluids.  Keep drinking fluids to stay hydrated. Again, I'm not a doctor however, some of Kevin's meds caused him to get dehydrated and we found keeping hydrated helped him a great deal.

Yassi, I hope you can relax and enjoy the Christmas holiday.

Please keep us posted on how you are doing.

Hugs, [smiley=hug.gif]

Lore

 

Thanks Jill and Lore! It helps to know that there is support out there. I have been drinking water like crazy and it just sems like my body is soaking it all up.  I didn't realize how dangerous dehydration is for someone with MM till the doctor yesterday said he had to find a good vein ASAP and get fluids in me.

You all have been wonderful and I will keep you posted as to what Dr. Steinberg says soon.

Have a great holiday,

Hugs  [smiley=hug.gif]
yassi

hi everyone,

I was asked by someone if i knew of a moyamoya center in Toranto Canada? Has anybody heard of this center.

Happy holiday,
yassi

Update as of today.

I got an e-mail from Joli at Dr. Steinberg's and she said they are waiting on another test results to be done. I sent them my records and the hospital here didn't include my angiograms. It looks like I may be having surgery soon. :(  :(  :(

I am going to get a copy and next day air them. Let you know when I know more.

Happy Holiday's
yassi