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anybody know Dr. Fady Charbel in Chicago? (Read 20073 times)
Cherry (LuckyMe)
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anybody know Dr. Fady Charbel in Chicago?
Apr 10th, 2008 at 11:34pm
 
I had a mini stroke on Monday afternoon, and finally diagnosis with MMD yesterday.

My physician said there are not many MMD experts in this country overall, not even mention specifically in Chicago area.
But I did get referred  to Dr. Fady Charbel in Nero center of University of IL.

I read all the posts on this forum, but didn't see anybody recommend him.  I"m trying to make an initial appointment with him next week, but hesitated......

can anybody tell me what's the pro and cons for having the surgery?  Monday was the first time I had a stroke symptom, and my first baby is only 6 months old.  After reading so many stories of having 2nd and even 3rd surgeries, I really don't know if by-pass my only choice?

I feel perfectly fine to do anything before this stroke.......I'm in perfect healthy condition, not on any medication, workout..........is there any conservative treatment?
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Skay
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #1 - Apr 11th, 2008 at 1:28am
 
TTHi Cherrywanzi,
    Welcome to the mm family.  I was diagnosed with mm in 2002 at the University of Iowa Hospitals. I was lucky enough to have a Neurosurgeon there that was knowledgeable about mm.  I have not heard of Dr. Charbel but that doesn't mean he has not dealt with mm.
     I had bypass surgery in 2003. It was my only choice. This disease is a slow progessive disease and the only option you have is surgery. You have been lucky to have just a mini stroke. I am sorry to say that it will get worse if you don't take action now. Mini strokes turn into major strokes and you don't want that.
    There is no conservative treatment. You need blood flow to the brain and the only way to get that is surgery.
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Cherry (LuckyMe)
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #2 - Apr 11th, 2008 at 10:56am
 
Skay, thanks for the replay.

Do you know if there's anyone get totally recovered only after one surgery?

It's still now clear to me why so many people have 2nd and 3rd in short period of time after the 1st. 

I'm still in my 30th, does that mean my skull will be cut open again and again for the rest of my life?
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Cherry (LuckyMe)  
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #3 - Apr 11th, 2008 at 2:29pm
 
Hi, Welcome to our MM family!

I’m sorry to hear you were diagnosed with MM, but I’m glad you found us. There’s a wealth of info here and many people who traveled the road you’re about to take. We’ll be happy to answer any questions you may have and help you in any way we can.

First off, the best advice we can give you is to learn all you can about this disease. You’ll find very few little MM experience in the medical community and unfortunately their advice could possibly put you down a deadly path. Knowledge will help keep you on the best path.

You are one of the lucky ones! Many are not as fortunate and are diagnosed AFTER a stroke. You may be feeling well and seem in perfect health, but the fact is, this is a silent and devastating disease!!! With MM a stroke is definitely coming, you just don’t know when. Your mini stroke was a warning that your brain is not getting the proper blood, oxygen, nutrients it needs. This is a progressive disease and gets worse over time, and so far surgery is the ONLY treatment to prevent that stroke or hemorrhage and or possible death. Surgery is your ONLY choice to prevent that stroke! There is NO conservative approach with MM.

The reason you read that patients have 2 surgeries is because in most cases this disease effects BOTH sides of the brain. (Your internal carotid arteries) Perhaps only one side of your brain is not getting the proper blood flow and so they do surgery to by-pass that blockage, and get you the proper blood flow to prevent that stroke. Then later when and if it progresses to the other side of your brain, they have to do another surgery to supply that side of the brain with the proper blood flow. That’s why having a doctor with MM experience is so vital, so you hopefully won’t ever need a third surgery. Yes, sometimes MM is unilateral and affects only one side, but since this is a progressive disease, you would constantly have to have follow up testing to see if it is progressing to the other side.

If you have an experienced MM neurosurgeon, you have an excellent chance for a perfectly long and normal life without ever having surgery again. The key to success is MM EXPERIENCE. This is a rare disease, so knowing the best approach for your individual case is vital because No two MM cases are alike. So a MM experienced neuro is so important!

I don’t know if you viewed this Stanford video under Links on the website, but if not, this may be helpful in understanding MMD a little better. You’ll also find this to be the best MM program currently anywhere in the entire world. Many mail their films to Dr. Steinberg to get his expert opinion. It’s free and you’d know if you were on the best path. He’s one of only a few MM experts in our country who deals with this disease on a daily basis and has done over 500 successful surgeries.

Stanford video – Moyamoya Disease
http://www.moyamoya.com/stanfordvideo/moyamoya2.wmv

As far as Dr. Charbel, we have a member here from your area who has had several surgeries and still searching for a doctor with real MM experience in and around your area, knowing the key to success in treating this rare disease is experience and knowing the proper approach for each individual case, and IMO, and in her experience, although Dr. Charbel may be a very good neurosurgeon, it’s been our experience over the years that Dr. Charbel isn’t as experienced with MM as we would like or want our doctor to be. I would advise anyone in your area to do your homework and search for a doctor with REAL MM experience.

I’ll keep you in my thoughts and prayers.

Mar
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Cherry (LuckyMe)
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #4 - Apr 11th, 2008 at 4:19pm
 
Mar, I really appreciate your very informative replay.

Yes, I'm doing my homework now. Acutally I spend almost all night last night reading posts and articles about MMD.  Honestly, that made my already bad headache even worse. But I'm glad that I found this website......It helped alot already.

I'll download the standford video and watch it over the weekend.

My hubby also find this
http://hopkinsneuro.org/cerebrovascular/blood_flow.cfm
and this doctor Tamargo in John Hopkins sounds very experience too.  The most attractive point in this artical is that he can combine 2 sugeries into 1. 

Does anybody have experience with Dr. Tamargo?

You know, the wird thing is, today Dr. Charbel's assistant called me couple of times, sounds really desperate to convince me to go there.  Eventhough I kept telling her that I'm still thinking and there's lots of insurance issues I need to figure out before seeing them, but they still insist I go there next.  Of course I didn't say Yes.  But, this made me couldn't stop wondering........Why do they want me so badly?

1)this is an important surgery, therefore means big revenua for them.

2)Dr. Charbel didn't really have many real MMD patients to practice his MMD bypass experience. Now I'm a perfect genia pig?

any thought?
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Cherry (LuckyMe)  
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #5 - Apr 11th, 2008 at 11:02pm
 
First off, the surgery you read about by those doctors at Hopkins was a totally different surgery than any surgery for MMD. What's important to success in beating this disease is if the doctors and staff understand MM "the disease itself" and have experience treating it.  I would bet that any good neurosurgeon could perform the surgery, but there are so many other important factors about the disease and the patient that need to be considered to assure that success. That’s where MM experience is so vital.

For example, after my 20 year old niece had a mild stroke, they sent her from our local hospital here, to the University hospital in the city, where she was diagnosed with MMD. They told us that we had some of the best neurosurgeons in the country there, and that they knew about MMD, BUT they told us she didn't need surgery at this time, that we should wait, so naturally we believed them. Long story short, because she didn't have the surgery, she ended up having 4 devastating strokes that left her in a coma, on a feeding tube, paralyzed, incontinent, etc and fighting for her life. Thank God I found this website. DJ told us to get a second opinion from a MM expert, Dr. Steinberg, at Stanford; so we overnighted a copy of her films (MRI/MRA & Angiogram) to Dr. Steinberg for his expert opinion, and he called us the very next day and said she needed surgery immediately, she had a severe blockage on both sides of her brain, so we had her medically air lifted from Philly to CA and Dr. Steinberg saved her life, but the damage was done and her life will never be the same. That's why I urge people to get a doctor with MM experience, and also to learn all they can about this disease, so that couldn't ever happen to them. When you wait or make a wrong decision, you put yourself at risk for a devastating stroke or death.

IMO, I wouldn’t wait too long. Please see an experienced doctor ASAP.

Today I spoke with the member near you who knows Dr. Charbel. I’m hoping she will post and give you her opinion.

Mar
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moody
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #6 - Apr 12th, 2008 at 1:32am
 
Hi, Dr Tamargo is my surgeon, and he is wonderful, he have a good experienced of MM, he is a director of neurology department, I'm greatful he is my doctor.  When he did my surgery he not only by pass the blood velsel, but he also get some blood velsel to loop around the skull base so they can grow themself over the time to replace the blood velsel damage by diease, he save my life.
Kieu








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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #7 - Apr 12th, 2008 at 2:16pm
 


lovekeanu

you are very lucky to have been diagnosed so quickly and before a major stroke.  i too had a mini stroke and went to my local ER.  Unfortunately they knew nothing of MMD.  my local hospital has a CT scan machine but no MRI machine.  The CT scan showed no problems.   i felt fine after the mini-stroke which included temporary paralysis of my left arm,hand and vocal cords.  i was fine by the time i got to the ER.  Unfortunately i had a  real stroke shortly after my ministroke.  It left my left arm and hand paralyzed.  i have gained the use of it back but still have problems with the coordination in my fingers.  I'm thankful it wasn't worse. My stroke occured in Sptember of 2006.  I was finally diagnosed with MMD 6 months later.  they thought the paralysis was MS.  So you need to see the good fortune you've had in the fact that you were diagnosed so quickly.  Mine is only on the right side so i've only had to have one surgery which took place Sept 2007 one day shy of the year anniversary of my stroke.  My surgeon advised me that i will have to have other angiograms to ensure the MMD is not progressing to the other side and if it is then he can perform the surgery before anything happens.  I don't want to frighten you by writing this but i hope you see the mini stroke as a warning.  i was only 38yrs when the stroke happened.  My kids were only 9 and 11yrs.  You have a young family that need you.  Listen to the advice you receive on this website. the people here know what they are talking about because they or someone close to them has been where you are.  I embraced the idea of surgery because i knew that it was the one thing that would allow me to continue to watch my kids grow up.  Being nervous and scared is normal but try not to dwell on the surgery itself but think about how things will be after the surgery.  Wishing you and your family the best.

Debbie
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Cherry (LuckyMe)
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #8 - Apr 12th, 2008 at 6:34pm
 
I couldn't help tearing while reading all you guys replaies.....I really felt I found a family here. Smiley

I'm not scared of the surgery itself. I was just not sure whether it's my only choice for now.  After doing lot of researches by ourself, my husband and I have agreed that we should go for a surgery.  We can't afford taking the risk of not doing anything.  I don't want my 6 month old son suddenly losses his mommy next time.   Last time when my strok happened, I was laying on sofa waiting for my husband send me to ER, I tried to hug my son but my left arm couldn't move.  He's still too young to understand any of this, he was smiling to me like he always does.  I was very sad at that moment.  I didn't know if I would be able to hold him again.  I really want to see him grow up and calling me mommy. Cry

Anyway, I think Standford should be my top pick. Here's my to-do list for the next week or so.  Please point out if I'm on the right direction.

1) have an appointment with my family physician on next Tuesday 4/15/09.  She's working on referral paperwork.  My insurance company picked a local doctor(not Dr. Charbel) who's in network from Loyola University in Chicago.  They didn't tell me the doctor's name yet, but seems they want me to go to an in-network doctor first.

(ps. Dr. Charbel was recommended by Nerulogist Dr. Maghadam in Edward Hospital who first diagonosed me having MMD.)

In next Tue's appointment, I want to ask for a copy of my MRI/MRA and Heart Altrasound results,etc.  Then send it to Dr. Steinberg.

Also, ask my family physician and insurance, see if they can work something out and officially refer me to Standford.

2)contact Standford as early as possible, find out the total cost.  In-network, outof-network, out of pocket etc.

3)prepare $$$$$$$$....if insurance refuse to pay anything, it's gonna be challange for us

BTW, I'm with Blue Cross Illinois HMO.  Does anybody know if they can cover some Standford cost in the past?

Thank you guys so much!!!
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #9 - Apr 12th, 2008 at 9:20pm
 
Hi, Lovekeanu and Welcome.

You are on the right track.  I commend you for all your hard work and effort to educate yourself about the disease and being your own advocate in seeking the very best treatment.

Sending your MRI to Dr. Steinberg for a second opinion is a good thing. If you have an angiogram, send that too. He is a Moyamoya specialist (only one of two in the USA) and he will render an "expert" opinion at no cost.

The issues MM patients face is the inexperience by doctors with this disease. that's why you hear things like "wait and see" or "come back when you have another stroke". Ridiculous! That's exactly what you are trying to avoid. Most Neurologist can do brain bypass surgery but with MM, depending on the individual, the surgery or surgeries can be different. Depending on the type of surgery performed, it can mean the difference in the outcome and any future bypass surgery that may be required. That's why it is imperative one have a second opinion from a MM specialist and be treated, if at all possible, by a MM specialist.

I don't have any information or know anything about the doctors you mention.  There are many wonderful and knowledgeable neurologist out there but few are educated in MM the disease and the appropriate MM treatment options. Simply because MM is considered a rare disease and many doctors have not had the exposure. My brother's local neurologist had never heard of MM or seen a MM patient until my brother.  I will tell you my brother was ultimatley treated by Dr. Steinberg at Stanford.  Thank God!

Since your HMO is with Blue Cross and Blue Shield and they are all over the USA, they most likely have a national provider network.  Of course they want you to stay in-network because of the cost to both them and you. However, it could cost you both in the long run more than if they agree to let you be treated by a MM specialist. It depends on your individual circumstances and outcome.

Depending on the "type"of HMO you have, will depend on how difficult it will be or not be to go out-of-network.  You may want to check to see if your HMO has "centers of excellence".  Many insurance companies have contracts with such facilities to care for their members who have rare diseases.  Most generally, these centers are specialized in rare cancer cases as an example but I would argue the fact that Moyamoya is a rare disease and there are only two MM specialist in the USA and Stanford is the only certified MM center in the USA.  BCBS may have a contract already in place with Stanford.  It may be that they don't specifically have a contract with Dr. Steinberg but they can negotiate a contract with him at in-network benefits.

Be very careful going out-of-network due to the out-of-pocket expense.  It can get very costly. Usually, if you have an out-of-network benefit the out-of-pocket is capped at a certain dollar amount.  This may or may not be an option for you.  I don't know without looking at your policy.  It is very important that you determine if you even have an out-of-network benefit to start with.  If you have no out-of-network benefit, the cost is all on you. That's why I am cautioning you to find out if you have an out-of-network benefit, if so, what are the deductibles and co-insurance?  If you have no out-of-network benefit, you are on the hook for the entire cost. Even if you have an out-of-network benefit, I would press your HMO to get you in-network with Stanford and Dr. Steinberg by them negotiating an in-network contract.

You have options depending on your decision as to  who you want to treat you.  You can appeal your HMO's decision if you decide you want to have Dr. Steinberg treat you and they won't agree.  Certainly, the HMO should take into consideration this is a rare disease ( 1 in 2 million) there are only two MM specialist (experts) in the USA and that ultimately, it can cost them less in the long run if you are treated by a MM specialist and this is your life.  I would certainly fight to be treated by a MM specialist.  Others on the board have fought with their HMO's and have been successful.

If you feel very strongly about getting treated by a MM specialist and your HMO is uncooperative, you can contact your Congressman who has to respond and will get involved.  I hope you can work this out to your satisfaction without going that route but it is an option if all else fails.

I hope this is helpful to you and I wish you the very best.

Please keep us posted.

Hugs,

Lore            
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Cherry (LuckyMe)
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #10 - Apr 12th, 2008 at 9:51pm
 
Lore,

I've printed out your post and will use it as a guildline when negotiate with BCBS. ;Grin

I'll keep everybody updated after my appointment with family physician.

Thanks!

LoveKeanu
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #11 - Apr 14th, 2008 at 4:24pm
 
You go girl, you're on right track, and Lore is expert in insurance field, good luck on everything and keep us post.
I will keep you in my thoughts and prayers.
Kieu
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #12 - Apr 17th, 2008 at 2:01am
 
Hi there,

It looks like I am a day late and a dollar short and I apologize about that.  I am the one in the Chicago area that Mar spoke about that has had some experience with Dr. Charbel.  I do not have direct experience with him but have met a few Chicago area MMers that had surgery with him.   I was around for their surgeries and post-surgery experiences.  In all honesty, and this is totally my opinion, I would not have Dr. Charbel perform my surgeries.    I don't feel comfortable going indepth on this forum about why I say that but I would happily give you my reasons in an e-mail.  However, I will say that my biggest concern is that he doesn't seem to follow the same schedule of testing (especially post operative testing) that I know most neurosurgeons follow concerning moyamoya - most surgeons with successful outcomes I should say.  As Mar said, I just don't feel he would be considered a specialist in the disease and you deserve a specialist!

Also, I met with or called many neurosurgeons in the Chicagoland area including Loyola in my quest.  I went to Loyola specifically because they said they had experience with moyamoya.  Well, I had an angio there and the neurosurgeon met with me in a room afterward and they told me they couldn't do anything for me.  I never went back.  This was around 2004 though so things may have changed with regards to their knowledge of the disease.  Or not. Wink

I totally think you are on the right track by setting your sights on Stanford.  That is seriously your best bet right now.  And, YES, surgery is the only treatment (there is no actual cure) for moyamoya and nobody does it better, at this point, than Drs. Steinberg or Scott.

Best wishes to you and do not hesitate to contact me via e-mail at any time.
Lisa
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #13 - Apr 19th, 2008 at 10:54pm
 
I  wish I had checked sooner.  I just hope it isn't too late, and that it helps.  My son was diagnosed with MM in 2006 when he was 7 months old.  We live in NW Indiana, and he was transported to University of Chicago Comers childrens hospital.  He had his surgery done by Dr. David Frim.  He did his training under Dr. Scott in Boston.  My only concern is that I am not sure if he does adults, but since there are not many doctors who know the procedure, it wont hurt to try.  My son had his surgery when he was 8 months old and they were able to do both sides in the same surgery.  My husband and I have never heard of Dr. Fady Charbel.  I can e-mail Dr. Frim to see if he treats adults or if he knows Dr. Faby Charbel.
I hope this helps.
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #14 - Apr 19th, 2008 at 11:06pm
 
I just posted about Dr. Frim from University of Chicago.  Dr. Scott from Boston is the one who pioneered the bypass surgery.  As I mentioned before, Dr. Frim did his training directly under him and also worked with him for a number of years.  It is a lot to go through and we found that it is always easier when you are closer to home. I pray I am not too late.

Abbe
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Cherry (LuckyMe)
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #15 - Apr 20th, 2008 at 11:10am
 
Hi everyone, sorry for response so late. As you all can imagine, I was busying on research and other stuff last week.....that's why.

anyway, long story short, I have to jumping through the stupid insurance loop right now.  The only doctor they want me to see locally at this point is Dr. Lorenzo Munoz at Rush Hospital in Chicago.  I called yesterday to make an appointment for 4/29/08.  His assistant was kinda rude.  I only planned to ask 2 questions when making the appointment. The first question was, "how many MMD patients has Dr. Munoz seen?" She anaswered, "less than a douzen." then I was about to ask the secound question which is "how many MMD surgery has he ever performed?"  I believed every patient has the right to ask these two very basic question before decided to see a doctor, right?
But his assistant hang up the phone before I finished my 2nd question.  That made me felt really bad. 

But, it could be a good thing too.  Because all I'm doing now is to collecting enough evidence to show the insurance company that how "bad" these local surgeons are, so I can request to go Standford later. ;Grin

I don't know how long it will take to finish seeing the local MMD "specialists" before I can go standford. But I will keep you posted with any progress.

Thanks, I love you all.
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #16 - Apr 20th, 2008 at 11:22am
 
Lisa,

Would you mind telling me why you don't recommend Dr. Charbel in email? My email address is in my profile.

Actually, Dr. Charbel's assistant called me again yesterday, still convince me to see him next week.  Eventhough I told her that the insurance company only allows me to see Dr. Monuz at this point, but she just doesn't let me go! She said that I can see him first, and they will write a letter to insurance company for me, etc....so I told her that I'll consider seeing them if I need 2nd opinion.........funny thing is, I never met any doctor who's so ugar to see a patient.  It's always the other way around.......anyway, his assistant made me feel like she's a sales person.  ;Grin
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #17 - May 9th, 2008 at 5:16pm
 
update:

Send my MRI to Stanford last week, received call from Teresa couple of minutes ago.  Dr. Steinberg confirmed that I do have Moyamoya, on both side.....and she said it's very bad.  They suggest surgery within the next 2~3 weeks.  But the bright side is that my brain doesn't have any damage from the last mini stroke. This probably give a good base for a successful surgery.

I'm working with my family physician to get the insurance approval.

Since I need to stay in Stanford 3 weeks total, I will need to either stay at friend's or stay in a close by hotel.
Is it OK for me to stay in a hotel alone for 2 weekds during my outpatient period?  My husband needs to go back to Chicago to work between my two surgeries....
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Reply #18 - May 18th, 2008 at 9:26am
 
This is what Dr. Steinberg's diagnosis about mine, "Your MRA scan shows bilateral supraclinoid internal carotid artery occlusion, with moyamoya vessels bilaterally.  Your right P2 posterior cerebral artery appears to be occluded as well. " Embarrassed

but the problem is, my family physician called us yesterday and told us that Blue Cross Blue Shield HMO rejected our request to go Stanford>Sad Angry for the following reason:
they belive that there are enough neurosurgeons in Chicago area who has MM experience and perform the surgery.
If I don't trust Dr. Munoz at Rush Hospital (the first specialist they referred me to see....information can be found from my previous posts), they now give me second choice.....Dr. Charbel at University of IL, and he can arrange surgery for me as early as next week....

my god, goes back to my question at the begining of this posts......who the hell is this Dr. Charbel?

Eventhough Dr. Charbel's staff refused to give me any number on how many MMD patients they've been treated, all of a sudden now, the HMO said that Dr. Charbel claimed that he's been treated 30~40 MMD each year for the past 10 years. "he's doing MMD by-pass surgery every other week, this is nothing new to him.......blah...blah..."

I really doubt in Chicago area there are 30~40 new MMD patients and they all went to see HIM???300~400 patients total? how come I didn't see any of his patient with good outcome said anything about his wonderful job on anywhere?

The otherthing made me very upset is that according to our family physician, Dr. Charbel told HMO director that "his is a good friend of Dr. Steinberg, and they share some MMD knowledge......"  Does friendship with a specilist make you a specilist by defult???? what kind of logic it is! 

I don't know if his so called good friend relationsip with Dr. Steinberg is true, but I don't believe this has anything to do with his profeesional performance.  On the otherhand, somehow I believe a real good doctor doesn't need to brag his relationship with so-and-so to make people trust him more.

Our feeling is that our family physician will not fight for us with HMO.  She even suggested us not to appeal.  But my husband and I still want to appeal, at least we have to try.  But we have no idea about the appealing process.  At this point, we are collecting all the documents we have, and all the log files that I've been saving for each MMD related conversation with multiple "specialists".

Eventhough Theresa from Stanford told me on 05/03 that someone from the registration office will contact me, and collect my insurance information so that they can try to convince BCBS HMO, but so far, all most two weeks passed, still nobody called me.
I followed up twice via email and phone regarding to this issue, but they keep telling me that they are very busy, short handed, but keep promising that someone will call me.........I felt guilty of bothering them too much, so I didn't call last week.  Now HMO has already rejected my request, and Stanford didn't even contact HMO yet, is it too late for Stanford to contact them??

What can I do now??? any suggestion is highly appreciated.
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #19 - May 18th, 2008 at 9:30am
 
oh, another thing bothers me is, when I told my family physician that Dr. Steinberg was highly recommended by lot of MMD patients.  Guess what she said, "well, maybe it's just because Dr. Steinberg's team has a better marketing strategy....., and other good doctor doesn't do that."
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Reply #20 - May 18th, 2008 at 9:32am
 
Lisa,

Again, could you please send an email regarding to your feeling about Dr. Charbel.  I really need to know this now since HMO wants me to see him.

My email address is: cherrywanzi@yahoo.com

Or if you prefer to call, just drop me a line, I can send you my cell phone number.

Thanks a lot.
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #21 - May 18th, 2008 at 6:39pm
 
I just read your last few posts and simply wanted to make a few comments. First off, I’m so sorry to hear your insurance won’t allow you the best MM neurosurgeon possible. I think you deserve that. I don’t know anything about insurance issues, but I do know there are only a few MM experts in the country. MM expert, meaning:

·      Deals with moyamoya on a daily basis
·      Does research, testing, studies, teaching on moyamoya
·      Directs their practice towards the treatment of moyamoya, not just does the surgery because they can
·      Does various versions of the surgery (i.e. EDAS, STA-MCA, EMS), based on each patients' case

Dr. Steinberg is one of those experts and he’s done over 500 successful MM surgeries, with Stanford being one of the largest moyamoya referral centers in the world. That’s NOT marketing, those are FACTS that we as a MM family are aware of and pass on to new members. Unfortunately no other neuro in the country has credentials like that. I wish to God they did.

Over the past 5 years I’ve spoken with MM patients that have had strokes, some severe, and some have even died because of their misdiagnosis, lack of any MM diagnosis, botched surgeries, incorrect approach, etc simply from lack of MM experience. Not because they didn’t have good neuro’s, but because they simply didn’t have enough knowledge of this rare disease. We here simply give you the facts, as we know them. Anyone here who has had successful surgeries will tell you they had to fight to get the proper care they deserved. All we can do is tell you what we know from experience and pray you get that care. So my advice would be to keep calling, keep fighting and go with your gut. You made some really wise observations thus far, IMO. If you feel your family physician isn’t fighting hard enough to get you the BEST care possible. Keep fighting!!! Tell her, this is a RARE disease for God’s sake. Wouldn't she want the best care if she were in your shoes? My feeling on it is, if your physician did any simple research for you, she herself would see that Stanford was the best in the country and you’d think she’d want that for you, don't ya think?? Oh well, things like that usually prove themselves in time. That's so sad.

I sure hope Lisa contacts you with any info that she may have. I’ll keep you in my prayers.

Mar
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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #22 - May 19th, 2008 at 12:46pm
 
Thanks Mar.

Here's the update:

Bob Pullian from Dr. Steinberg's registration office called me this morning and collected all my insurance information.  He said it's not too late for them to get involve.  He'll call the HMO director who rejected my case today and see if he can get a copy of the rejection letter. I doubt that HMO would release that to him at this point.  But I will fax Bob once I receive that letter in mail from HMO.

I also had another episoda last week while I was sitting quitly without any heavy physical activity, my left hand suddenly felt numb. It lasted for 20 minutes and it disappeared.  I didn't go hosptial, just called my family physician and let her put into my record.  Because of this , Bob suggested me to file an URGENT clinic appeal (vs regular appeal which might take longer time to get a feedback.)

So, I called HMO appeal department a while ago.  They only take appeal by Mail/Fax. According to the representative, it might take up to 30 days to make a decision even for urgent clinic appeal. (eventhough it says 24 hours on their website).  Once I have a reference number for appeal, I can pass that to Stanford and see how much they can help from their end.


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Re: anybody know Dr. Fady Charbel in Chicago?
Reply #23 - May 19th, 2008 at 8:15pm
 
Hi LoveKeanu,

Boy are you getting the run around!  IMO, it's ridiculous!  This is your life and it's not a dress rehearsal. And, this is brain surgery not toe nail removal!

You are not only entitled to the best treatment, you deserve it. I doubt seriously that any one of the HMO people making these decisions would not do what you are doing in seeking the best possible treatment for a rare disease by an experienced MM specialist.

For the HMO, it's all about running a business without regard for human life.  By messing around, this could cost them and you far more in the long run.

I suspect your HMO has a national provider network in place they either lease or own unless they are strictly local but they still have to have access to other providers for other rare cases such as rare cancers. So what's the difference?  Why or when would they send another HMO member with a rare disease to a specialist to be treated but not you?  Something is wrong with this picture. I believe they are just pulling your chain or else they are all in bed with each other!

I would be really surprised if your HMO doesn't have access to some type of nationwide provider network.  They can negotiate price with Stanford and Dr. Steinberg so they need to stop the run around and get on the phone with Stanford and negotiate an IN_NETWORK price....period.  That's all there is to it and nothing else other than politics.  It's ridiculous.....this run around! Not to mention it is costing you precious time and energy. This is your life and it isn't a game.

Clearly, if my doctor wouldn't fight for me to be treated by a true well known and experienced MM specialist, I'd be going elsewhere.  What's up with a doctor who is suppose to value human life not fighting for a patient to get expert treatment? Obviously, this particular doctor does not have your best interest in mind. Or, these people are all in bed with each other.

I certainly hope Bobb can be of immediate assistance to you.

I would think your HMO would look at this logically and realize you are in need of treatment ASAP as you are having symptoms and this is a rare and progressive disease requiring expert attention.

When you have a rare disease, it is highly unlikely there are numerous experts or specialist simply because a doctor isn't exposed to the disease when it is 1 in 2 million and believe me, no doctor where I live wants anything to do with MM because in their words " Do you know how many MM patients I see in a year? Maybe one".  In other words, they take no interest in it and therefore have no experience or knowledge about the disease or treatment options. Plus, why would they if they only see one a year? So clearly, there are few (2) true MM specialist that fit the criteria. 

Time is not on your side with MM being a progressive disease and you having symptoms.  If your HMO truly values human life, they will reconsider their decision NOW not 30 days from now to allow you to be treated by a MM specialist.

Keep in mind, you are getting a run around also known as BS from your HMO and you can always contact your Congressman as he/she has to respond.  You can also get an attorney involved.  Some employers offer legal aid and/or insurance or you may want to contact an attorney of your choice if Bobb is unsuccessful in making any headway with your HMO.  Regardless, I would not sit back and wait or continue to play this game of Russian Roulette.  At some point, liability enters the picture. Does your HMO want to debut on 60 Minutes, CNN, or The New York Times?  I don't think so!

Don't let your HMO bully you. This is the USA and we don't have socialized medicine so, what's the problem?

You stand your ground and keep us posted on you and Bobb's progress.

Hugs,

Lore 

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Re: Need help !!!!
Reply #24 - May 20th, 2008 at 12:31am
 
Quote:
I really doubt in Chicago area there are 30~40 new MMD patients and they all went to see HIM???300~400 patients total? how come I didn't see any of his patient with good outcome said anything about his wonderful job on anywhere?

The otherthing made me very upset is that according to our family physician, Dr. Charbel told HMO director that "his is a good friend of Dr. Steinberg, and they share some MMD knowledge......"  Does friendship with a specilist make you a specilist by defult???? what kind of logic it is!  
.


Hi,

I'm going to try and e-mail you again (apparently my first attempt didn't reach you?) and I am hoping we can talk- A LOT!   In the meantime,  Dr. Charbel has indeed seen quite a few MM people in the midwest.  How many exactly I don't know but there are a lot of people with MM in Illinois, Indiana, Wisconsin, Michigan all being sent to "the big teaching hospitals in Chicago".  I've met with 3 MM people who had Dr. Charbel.   The reason he has seen so many is because there were really only 2 surgeons in all of Chicagoland that had any REAL experience with MM so, of course, when people were being diagnosed, they were sent to one of these two guys.  Unfortunately 1 of those surgeons, and the one I would recommend, has moved to Canada (our loss, Canada's gain).   As far as the "good friends" part, well, it is my understanding that pretty much all of these neurosurgeons know each other fairly well from conferences and such.  It wouldn't hurt to ask Dr. Steinberg's staff if they would recommend Dr. Charbel, considering all your insurance issues.  I did just that regarding my surgeon (the long-gone Canadian one).

So, I'm going to immediately e-mail you but I want to leave you with this in closing.   It is an entry from the "guest book" on this site.   Talk to you soon.
Lisa

I am a 42 year old wife and mother of 3 who was diagnosed with MM 2 years ago. My Dr. at University of Illinois at Chicago is Dr. Fadi Charbel. I had my first STA-MCA bypass 8-05. The original plan was to follow with the right side bypass 30 days later, Unfotunarely I wound up with an infection of the left side and had to have the cleanup surgery in 9-05. The right side bypass was done 90 days later in late 12-05. Feeling great now , however in 11-06 had a heart attack they say was due to the MM. A stent was put in and had an angio where they found the left bypass is now not working at all, however the "normal way of flow" is working about 60%. I am to watch for original symptoms like memory loss and poor eyesight and small stoke like symptoms returning. And be honest about them when they return. Then we will go back to the drawing board bypass wise I guess. I hate to put my family through this again,but I know they would rather have me with them than without. Has anyone out there had to have repeat surgeries? How did that go and how far apart were the surgeries? Last but not least Lisa if you are still out there give me a ring.

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