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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › Deciding what to do . . . where to go

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Deciding what to do . . . where to go (Read 5797 times)

Jacq

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Deciding what to do . . . where to go
Jan 17^th, 2008 at 8:56pm

hi everyone!

I have been reading some posts with interest last night and tonight . . .
I officially found out that I have MM around a month ago- I am waiting to hear back from Dr. Steinberg and Dr. Scott and G-d willing, have an appointment with Dr. Jay P Mohr (head of strokes at Columbia) on Tues. I have been on edge these past two weeks to say the least.

I have also heard both opinions: "If it ain't broke don't fix it" and "if it were my daughter I would treat it/if you lived in japan there would be no question."
so I am preparing myself for the prospect of surgery since that seems to be the consensus on this site and it does make more sense

so here are my questions. (I want to ask them now because I want to be able to make quick decision next week):
is there a big difference between Dr. Steinberg and Dr. Scott - in terms of experience, success rate, etc
also I am from NY - as far as I can tell most of you who have gone to Dr. Steinberg traveled there
a) how does that work for flying back after surgery?
b) how does that work for follow-up visits? can a local NY doctor be in charge of my care? how often do you need to be seen?

not sure what else to say right now other than: "Thanks DJ! This site is great!"
have a great weekend everyone
wishing all of you the best!
--Jacqueline Cheesy

peace. it does not mean to be in a place where there is no noise, trouble, or hard work. it means to be in the midst of those things and still be calm in your heart. (unknown)

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Jacq

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Re: Deciding what to do . . . where to go
Reply #1 - Jan 17^th, 2008 at 9:21pm

just wanted to ask another question -
anything specific to ask the doctor on Tuesday
I do have a list but wanted to hear your suggestions

the top two questions I was told to ask:
What is causing the occlusion?
Is there a quantatative number that can be put on the difference in the blood flow on the right side of my brainbefore/after the Diamox?

Do I need to have to have someone who is experienced with Moyamoya do the angiogram?

have a great night!

--Jacqueline ;)

peace. it does not mean to be in a place where there is no noise, trouble, or hard work. it means to be in the midst of those things and still be calm in your heart. (unknown)

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Mar

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Re: Deciding what to do . . . where to go
Reply #2 - Jan 18^th, 2008 at 1:33am

Hi Jacqueline,

Both Dr. Scott & Dr. Steinberg are excellent MM specialists and deal with this disease on a daily basis. As I understand it, Dr. Scott is primarily a pediatric MM specialist up to a certain age, and Dr. Steinberg is both pediatric & adult MM specialist. Dr. Scott primarily does the “indirect” surgical approach because his patients are so young. Dr. Steinberg does ALL the surgical methods, depending on which is best for that individual case. It would depend on your specific case, which surgical method is best for you, and that’s a very important factor to consider. For example, if one or both internal carotid arteries were completely blocked, the best surgical approach is usually the “direct” surgery if possible, because of the urgent need of blood supply to the brain. The "direct" surgery gives you an immediate new blood supply, whereas the "indirect 'surgery may take 6-12 months for a new blood supply. So you can see why the different methods of treatment is a very important factor for you to consider and also why a MM specialist is so important.

I can’t speak for Dr. Scott, because I don’t know his statistics, but I do know Dr. Steinberg has done hundreds of successful surgeries for MM and has over a 95% success rate. It has been said that Stanford has the strongest Moyamoya program currently in place....anywhere!

I have never heard of a problem when flying home from surgery. I don’t think he’d release you if he thought there would be.

As far as the follow up care. I’ve seen it done both ways. Some had their follow up care with local neuro’s after their Stanford stay and many have flown back to Stanford for their 6 or 12 month checkup, and when they were cleared, they’d follow up locally from then on out. Now a days, follow up results can be sent to Stanford, so it shouldn’t be a problem to have follow up care anywhere. I would think that would be a personal decision, but not a problem.

In regards to your question, “What is causing the occlusion?” The cause of the arterial narrowing is unknown. I wish we did know that one for ya, but no one knows that yet.

I’m sorry, I’m not quite sure what you mean by “Is there a quantatative number that can be put on the difference in the blood flow on the right side of my brain before/after the Diamox” so I can’t help ya with that one.

Yes, IMO, I believe that someone who is experienced with Moyamoya should do the angiogram. I firmly believe that EVERYONE involved with a MM patient's care should have knowledge and experience with MMD. MM EXPERIENCE is the key to a successful outcome!

As far as any other questions you should ask, DJ has a thread at the top of this forum that may be of some help:
Diagnostic process and questions for surgeons
:
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571

My advice to you Jac, would be to keep doing what you’re doing. Learn all you can about MM. By arming yourself with knowledge it will help you to make informative decisions on the road ahead. We’re here to help you in any way we can, so feel free to ask any questions and we’ll try to answer them the best we can.

Mar

« Last Edit: Jan 18^th, 2008 at 1:36am by N/A »

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kimba

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Re: Deciding what to do . . . where to go
Reply #3 - Jan 18^th, 2008 at 2:18am

I agree with Mar about the comparison between the two doctors...that's what I've heard as well.

Also, I agree with her about arming yourself with information so you can make an informed decision on what's best for your situation.

When I was diagnosed, my insurance company (an HMO) wanted me to stay local (in network) for my testing and treatment. However, the neurosurgeon they referred me to had only 18 months experience as an attending physician and had never performed the STA-MCA bypass surgery. I did internet research about the local doctor, and presented that information to my insurance company, supporting my argument to be seen by a specialist with experience in treating the disease. I insisted, and was eventually granted authorization to be seen by Dr. Steinberg, and had bilateral bypass surgery at Stanford in March 2007.

Since my surgeries, I have returned to Stanford for my postop testing and consultation. My MRI and neuropsych test were done locally, and the results were sent to Stanford (my choice, to save travel expenses). The rest of the tests were done at Stanford. Dr. Steinberg did insist on performing my angiogram there, since if it is not done correctly, it will have to be repeated...and it's not a fun test to have to repeat. The other tests that Dr. Steinberg ordered could not be done locally since most hospitals are not equipped for them. My insurance company had never even heard of them!

I have a local neurologist here, but she is not familiar with MM, so had referred me elsewhere when I was first diagnosed. Her information on MM was outdated and totally wrong, which I learned later (she told me that all four cerebral arteries had to be blocked for me to have MM...I'd be dead if all four were blocked!). I guess that's why they call it "practicing" medicine. However, she was wise enough to admit that she wasn't an expert, so I have to give her credit for that.

The main advantage to having followup at Stanford (or any MM specialist facility) is that they see this disease every day...they know what to watch out for, and can recognize if a problem develops. Someone who is not familiar with the disease may not recognize the symptoms of the disease progression, and even if they do, may not be familiar with appropriate treatment options.

If there's one thing I've learned from this experience is that you need a second opinion from a real expert, and you are entitled to it, though you may have to jump through some hoops to do it. You also need to do independent research and stick up for yourself, because, chances are, no one else will do it for you as well as you can do it for yourself.

Teresa, Dr. Steinberg's nurse is a great source of information. teresab@stanford.edu

Good luck!

I hope you get the chance to live like you were dying...

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moyamoi

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Re: Deciding what to do . . . where to go
Reply #4 - Jan 18^th, 2008 at 3:24am

In answer to your comment about "... if all four arteries were blocked I would be dead" There are actually 6 arteries supplying blood to the brain - 2 temporal arteries, 2 middle cerebral arteries and 2 posterior arteries. I know this as I DID have four of mine blocked with only 2 left supplying blood to my brain and I am very much alive, thank you very much!! Smiley

Moira

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kimba

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Re: Deciding what to do . . . where to go
Reply #5 - Jan 18^th, 2008 at 4:34am

It is my understanding that there are only four arteries that "naturally" directly supply the brain with oxygen - the two carotids (left and right), which run up the sides of the neck, and the vertebral (left and right), which run up the back of the neck, and that blockage of any of these four can result in stroke. Some people are born with only one vertebral artery because it never branches off into two like it's supposed to at the basilar artery. The vertebral arteries often compensate by enlarging when the carotids become blocked (as in my case). In doing so, they allow extra blood into the Circle of Willis, to make up for the loss of circulation through the occluded carotid(s), thus preventing stroke.

STA=superficial temporal artery - this is the artery that is used to "bypass" the blocked internal carotid artery in a STA-MCA (middle cerebral artery) bypass surgery. The STA supplies blood to the surface of the temporal area (the muscle and skin), not to the brain itself. As Dr. Steinberg put it, the scalp has "a luxurious blood supply," which is why they can afford to divert the STA to the MCA in most adult cases. Because the STA is a "surface" artery, they have to make a hole in the skull and feed the STA through it, in order to allow the bypass to the MCA.

Therefore, if you have had bilateral STA-MCA bypass done, you would have six arteries potentially supplying blood to your brain.

http://faculty.washington.edu/chudler/vessel.html says:

Blood is supplied to the entire brain by 2 pairs of arteries: the internal carotid arteries and vertebral arteries. As you can see in the figure below (sorry, it didn't copy over), the right and left vertebral arteries come together at the base of the brain to form a single basilar artery. The basilar artery joins the blood supply of the internal carotid arteries in a ring at the base of the brain. This ring of arteries is called the circle of Willis. The circle of Willis provides a safety mechanism...if one of the arteries gets blocked, the "circle" will still provide the brain with blood.

I hope you get the chance to live like you were dying...

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moyamoi

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Re: Deciding what to do . . . where to go
Reply #6 - Jan 18^th, 2008 at 10:50am

I still declare that you are originally supposed to have 6 arteries. I KNOW about STA-MCA Bypasses as I had both sides done over 6 years ago, and I still had 4 arteries blocked BEFORE I had the surgery and lived to tell the tale. Maybe you would like to see my medical notes?!! Everyone is different as my carotids were fine. Please dont presume to lecture me that I dont know what I have gone through as my specialists were well aware of MM (Unlike yours obviously) - and I really take affront to that

« Last Edit: Jan 18^th, 2008 at 11:03am by N/A »

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Mar

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Re: Deciding what to do . . . where to go
Reply #7 - Jan 18^th, 2008 at 12:07pm

Whoa Moria, please don’t make this forum about anything other than information and support. That’s what this website is about. I don’t think Kimba was lecturing at all, but rather informing a new member or anyone needing to know the facts about how the Blood is carried to the brain by two paired arteries, the internal carotid arteries and the vertebral arteries. These are facts that can't be argued. Kimberly was speaking about the 4 main arteries that supply blood to the brain, and you’re talking about branches in the brain. No one could possibly know your case or what you went through and never implied otherwise.

Thank you Kimba for your informative post.

Mar

« Last Edit: Jan 18^th, 2008 at 1:12pm by N/A »

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Jacq

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Thanks!
Reply #8 - Jan 18^th, 2008 at 2:36pm

Thanks Mar!
Thanks Kimba!

I really appreciate the advice and information
I will definitely keep you posted after my appointment on Tues and when I hear back from Dr. Steinberg
my next step is to call my insurance company and figure out what the deal is about coverage
have a wonderful weekend
and if teh wather is as beautiful where you are as it is in NYC enjoy it!
--Jacq(ueline) Wink

peace. it does not mean to be in a place where there is no noise, trouble, or hard work. it means to be in the midst of those things and still be calm in your heart. (unknown)

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kimba

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Re: Deciding what to do . . . where to go
Reply #9 - Jan 18^th, 2008 at 4:30pm

Mar, thank you for further clarifying what I was trying to say.

Moyamoi, I'm sorry if I came across as lecturing - that was not my intention. I, in no way, meant to demean you or your doctors.

Getting a diagnosis such as MM can be a terrifying experience. We fear the unknown...education is a powerful tool to get a grip on reality and understand how to procede. Knowing that MM wasn't a death sentence was reassuring to me. Knowing the cause and effect, I was empowered to logically make the best decision for me.

Jacqueline, you asked how often you'd require followup. It would really depend on your particular situation. Initially, I was told at one week, then approximately 6 months postop, then annually thereafter. However, when I went for my postop (at 9 months postop), they felt I was doing so well that I wouldn't need an angiogram for another 2-3 years. I still have to clarify if I will need an annual consultation in the meantime.

You also asked about flying afterwards. There is bound to be some discomfort involved with such a surgery, even with the pain meds they give you. We actually drove home, which was an 8-hour trip. It was not fun, but I lived. I'm not sure which would have been worse, since I get air sick and discomfort in my ears on takeoffs and landings. But I know several people who flew home after the surgeries and did fine.

I've flown since then, for my postop checkup, and did fine. As a side note - surgical titanium does not set off metal detectors, so you don't need to worry about getting stopped for it going through airport security.

I went through a lot of red tape to get my HMO to authorize a consultation "out of network" with Dr. Steinberg. With the help of a friend in the insurance industry, however, I was able to wade through the process and succeed in getting that authorization. California has a state HMO board that reviews cases, and I did present my case to them, but was approved by my insurance company before I heard back from the state...maybe the copy of my state appeal that I sent to my insurance company lit a fire under them. ; Grin

In addition, Stanford has a contract department, which contacted my insurance company directly to offer to match the local "network" pricing. I'm sure this didn't hurt. So, if you have problems getting your insurance company to come around and see things your way, contact Stanford and see what they can do on your behalf in that respect. They also have financial aid available, and even work with people who have no insurance coverage to make it more affordable. I believe the approximate total for my preop testing and surgeries was $275,000-300,000. I'm still receiving bills here and there, but am told my HMO is supposed to cover all but $2,000 of annual copay, since all my Stanford expenses were incurred in the year 2007. I'm keeping my fingers crossed!

I hope you get the chance to live like you were dying...

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kimba

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Re: Deciding what to do . . . where to go
Reply #10 - Jan 18^th, 2008 at 6:07pm

Jacq, I forgot to mention one other thing...

If the doctor you are seeing is a surgeon you are considering to treat you, it would be good to ask what hospital he uses, and what experience that hospital's ER, OR and ICU staff has with treating MM. Their experience can be just as important as the doctor's experience. As an added bonus, it can take any pressure off the doctor to prove he's qualified to treat you. If he's internally questioning his own experience or ability, he can put off any negativity on the hospital and their staff rather than himself, and still save face.

« Last Edit: Jan 18^th, 2008 at 6:11pm by kimba »

I hope you get the chance to live like you were dying...

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