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Who do you believe!? (Read 10075 times)

calee

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Wyalusing, USA, usa, 480, 105, PA, Pennsylvania
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Who do you believe!?
Mar 4^th, 2008 at 1:12pm

Here is a brief summary since July of 2007. My 27-year-old son, Thomas had symptoms of a stroke and was sent to Geisinger Medical Center in Danville, PA by our small town hospital. At Geisinger they did CAT scans, MRI’s and MRA’s and decided to send him to Thomas Jefferson Hospital in Philadelphia, PA where he could have an Angiogram without waiting for Dr. David Carrington to get back from a conference. There they diagnosed a missing or clogged brain artery, probably from birth that caused three mini strokes because of low blood pressure. They ordered a follow up with the family doctor, put him on Plavix and ordered a CAT Scan to be scheduled for February of 2008.

In January 2008 Thomas had a massive headache, our small town hospital diagnosed a brain hemorrhage and he was again sent to Geisinger Medical Center in Danville, PA. They did another Angiogram and Dr. Carrington diagnosed Moyamoya Disease. He doesn’t do this type of surgery and recommended Dr. Steven Toms who agrees with the Moyamoya Disease diagnosis and recommends an EDAS procedure be done. We had CD’s of Tom’s tests sent to Dr. Gary Steinberg at Stanford University Medical Center where he and his Team reviewed the films and agreed with the diagnosis but recommend STA-MCA and EDAS procedures be done. Here’s where it gets confusing, Tom has Geisinger Health Insurance, which is an HMO, and they won’t pay for Dr Steinberg. They will, however, pay for Dr. Rafael Tamargo at Johns Hopkins Hospital in Baltimore, MD. Dr. Tamargo doesn’t agree with the Moyamoya Disease diagnosis, he thinks that Tom’s brain has done the work of re-routing and wants to see Tom in one year unless he has another stroke or brain hemorrhage. Now we have three different opinions! Where do we go from here?

Smiley

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Re: Who do you believe!?
Reply #1 - Mar 4^th, 2008 at 2:58pm

Hi Calee,

The key to your decision, IMO should be chosing a doctor with moyamoya experience. It's been my experience, that’s what saves lives and the key to success. This is a rare disease and unfortunately not many neuro’s have enough MM experience to make the important decisions for the different MM cases. For example, my 23 year old niece had a stroke and they sent her from our local hospital here, to the University of Pennsylvania in the city, where she was diagnosed with MMD, and they told us that we had some of the best neurosurgeons in the country there, BUT they told us she didn’t need surgery at this time, we should wait, so naturally we believed them. Long story short, she ended up having 4 devastating strokes that left her in a coma, on a feeding tube, paralyzed, 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; he’s one of only a few MM experts in our country who deals with MM on a daily basis. Dr. Steinberg saved her life, but not before the severe damage was done. It could have been prevented had we had surgery before the strokes. That’s why I urge people to get a doctor with MM experience. We didn’t even know that surgery was the ONLY option for treatment; her quality of life may not have been changed forever as it is now. They may have been good doctors, but NOT as far as MM experience or they would have known the risk we were taking by waiting.

MM is a progressive disease, it gets worse over time and you’re ALWAYS at risk for a stroke or hemorrhage with MMD, so prompt treatment is very important! Delay in treatment is the particular pitfall we see here every day because of the lack of experience and understanding of this rare disease in the medical community, and delay in treatment is dangerous and risky. With MMD, you know a stroke is coming, you just don’t know when.

There are different types of surgery for MMD and this decision is vital for success. It’s a personal decision for each patient because no two MM cases are alike, with all the personal factors involved for each person and the degree of blockage for each individual, but never the less, which surgery that’s chosen is crucial.

The “direct” bypass (STA-MCA) provides immediate blood flow around the occlusion and is generally the option preferred for adults. It is usually used when there is a urgent need for blood to the brain. For example, if one or both internal carotid arteries are completely blocked, as was the case for my niece. The ‘Indirect’ type bypasses (EDAS, EMS) take time for arteries to "grow" and provide the proper blood flow. Time varies from patient to patient but it could take anywhere from a month to 6 months to a year to see the benefit. Also the “indirect” type surgery will often be used if the narrowing has not yet progressed very far. You can see why the different types of surgery chosen is so very important and why experience is so vital! These are all important factors that a MM expert would best know from their experience.

As far as the Dr.’s opinion that said. “Tom’s brain has done the work of re-routing and wants to see Tom in one year unless he has another stroke or brain hemorrhage.” That’s unbelievable!!! That immediately tells me and anyone who knows about MM, that this doctor has absolutely NO experience with MMD!!!! My God, wait until he has a stroke or hemorrhage?? Surgery is to PREVENT a stroke or hemorrhage! I’ve seen what a stroke and hemorrhage can do and we’ve even seen death when you wait with MMD. That Dr. shouldn’t even be an option, IMO. The re-routing he’s speaking of are ABNORMAL MM vessels, and although they are supplying blood and helping at the moment, they are weak and fragile vessels and they can rupture or bleed at any time, which can cause a stroke/hemorrhage or God forbid, worse. These MM vessels are not equipped to deliver the volume of blood needed over a long period of time. This is why ALL MM patients are ALWAYS at risk of having a stroke or hemorrhage with MMD.

For what it's worth, If it were me or if we had to do it all over again, I'd beg borrow and steal to get the best doctor in the world, Dr. Steinberg. He has done over 400 successful surgeries for MMD and has the best MM program in the country. Ask those doctors you've mentioned how many successful surgeries they have done for MMD? That may help you decide right there.

Smiley

I will keep you and Tom in my thoughts and prayers.

Mar

« Last Edit: Mar 4^th, 2008 at 3:02pm by N/A »

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The_Mom_of_J_and_K

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Re: Who do you believe!?We
Reply #2 - Mar 4^th, 2008 at 5:37pm

Hi Calee,

I live in the Lehigh Valley area of PA. My daughter was diagnosed with Moyamoya, 12/24/05, at Penn State Milton Hershey Medical Center. Both of her EDAMS surgeries were performed by Dr. Kevin C ckfroft (please put an o in place of the space the firewalls won't allow me to spell his name correctly). He is a wonderful doctor and my daughter is doing very well. She was diagnosed Christmas Eve and by Christmas day the doctors at Hershey had an action plan in motion. We went home, 12/27/05, to wait for her surgeries to be scheduled. Unfortunately, because of the lack of a diagnosis by local doctors, and the pathology of her brain, she suffered a major stroke and we returned to Hershey of New Year's Day 2006. Dr. C. has co-authored a paper on Moyamoya with Dr. Steinberg, and consulted with Dr. Scott on preoperative decisions. Undoubtedly, Dr. Scott and Dr. Steinberg are the experts, but our experience with Dr. C. was wonderful and I found him to be extemely knowledgeable. Hershey is much closer to Danville and Hershey might accept your insurance. Please do not delay treatment, if my daughter had a timely diagnosis she probably would not have suffered the stroke at fourteen years old. When we thought she was having fainting spells she was having TIA's. I will pray for your family and hope my information helped.

P.S. I consider Mar to be an excellent source of information and very knowledgeable of Moyamoya. My dream is to have a country full of doctors that are Moyamoya experts.

« Last Edit: Mar 4^th, 2008 at 7:38pm by The_Mom_of_J_and_K »

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KTiller

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Freeland, USA, usa, 51, 28, WA, Washington
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Re: Who do you believe!?
Reply #3 - Mar 4^th, 2008 at 6:26pm

Hi Calee,
Dr. Steinberg has offered to perform surgery for other moyamoya patients with out-of-state HMO insurance at the same cost as the HMO's contracted rate. You might want to call the Stanford Moyamoya Center and see what arrangements they can make with your HMO.

Dr. Steinberg performed surgeries on both my right and left sides, one week apart, about four months ago. Personally, I would go nowhere else. He and his entire staff are absolutely amazing! He's now performed just over 500 surgeries for MMD. He's also now doing both the STA-MCA and the EDAS surgeries at the same time. As Mar said, the first gives immediate blood flow to the brain which is important if strokes have already ocurred, while the later requires about six months to grow the needed blood vessels. So now, you get the best of both with a single surgery. I've read that the EDAS is not always as effective for older patients, it's thought that younger children may have more of a growth hormone that aids in the growth of the blood vessels.

My previous neurologist also suggested what we call the "Wait & See" treatment, though he called it "Best Medical Management" i.e. aspirin, blood thinner, and when I had my next stroke get myself immediately to the ER. He said there was no question that I would have another stroke. The only unknown was how soon and how devastating. I sought a second opinion from a nerosurgeron in my local area, who had performed about 200 surgeries for MMD. He too recommended and would have performed my surgeries, but I choose Dr. Steinberg. Whether my insurance company paid or not was never the issue for me. I'm not rich by any means, but for this I wanted the best surgeon available. I was lucky, as I found later that my insurance company had paid 100%. My expenses were the travel, lodging and food for three weeks.

I know you must be very frightend and very worried now, but there is treatment available for your son and an angel in the form of Dr. Steinberg who can help him.

Best regards,
Kim

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Lore

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Delaware, USA, usa, 419, 133, OH, Ohio
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Re: Who do you believe!?
Reply #4 - Mar 4^th, 2008 at 9:51pm

Hi Calee,

Welcome to the Moyamoya family. I'm sorry to hear about Thomas but you have come to the right place and have been given very good advice and options and know we are all here to support you in whatever way we can. We all know how scary this can be and you certainly don't need the added stress of dealing with health insurance issues and doctors masquerading as Moyamoya specialist.

Clearly, Dr. Steinberg is the expert in this situation and also when it comes to Moyamoya surgical treatment options. He has successfully treated hundreds of Moyamoya patients over a 15 plus year period of time and has perfected the surgeries and surgical process over that period of time as well. Stanford is the only certified Moyamoya center in the USA.

As for the brain re-routing and correcting the problem is, in my opinion, ridiculous. Those re-routing vessels are most likely the Moyamoya collateral vessels that are trying to supply blood flow but they are too weak and fragile and can't supply the necessary blood flow and that may be the source of the bleed that you refer to or it maybe the carotid artery causing the bleed. I'm not a clinician or a doctor and I don't know Thomas' specifics but to suggest Thomas wait for treatment is absurd. As Mar mentioned, Moyamoya is a progressive disease and to wait is unacceptable and can utlimately spell disaster.

For a doctor to suggest you wait for treatment unless Thomas has a stroke or hemorrage is ludicrous. Why would you wait for Thomas to have a stroke or hemorrage when that's the exact thing you want to avoid? As Mar mentioned, when a doctor is inexperienced with this disease, these are the kinds of statements we hear far too often. Thomas needs the surgery to be put on a level playing ground in terms of having a stroke or hemorrage. I would question how many Moyamoya patients this doctor has successfully treated and if he has successfully treated Moyamoya patients, how did he do that by suggesting they take a wait and see approach?

As for your insurance, it appears you have out-of-state coverage since the HMO will allow treatment in Baltimore. I would fight for Thomas to be treated by a Moyamoya expert. Certainly you have a very good argument in that Moyamoya is a rare disease and there are really only two Moyamoya specialist in the USA and Stanford is the only certified Moyamoya center in the USA. This is brain surgery and you don't want just anyone doing brain surgery and especially if they aren't an expert in Moyamoya disease.

Usually, insurance companies have "centers of excellence" for treatment of rare diseases or specialized treatment for certain cancers, as an example. I would contact your HMO and determine if they have "centers of excellence" and discuss the issue with them and ask if they have in-network provider arrangements with Stanford and Dr. Steinberg. It is possible your HMO has a national provider network in place or a national provider network they lease. My only concern is if your HMO has a national network either owned or leased that you be certain Stanford and Dr. Steinberg would be considered in-network so you don't get hit with out-of-network expenses. They can be very costly. If your HMO doesn't have an agreement with Stanford and Dr. Steinberg, suggest they negotiate a contract. If that doesn't work, you can contact your Congressman to get involved and assist you with this issue.

I went down this same road 4 years ago with my brother that you are traveling with Thomas. My brother went misdiagnosed for 4 years and had two strokes and a dissected right upper internal carotid artery. His insurance didn't want to allow him to go to Stanford or to pay for the surgeries and I fought long and hard for them to negotiate a contract with Stanford and Dr. Steinberg. I had to get our Congressman involved who immediately got on the phone and started working on my brother's behalf. It wasn't easy but it saved his life because he was successfully treated at Stanford by Dr. Steinberg and in the nick of time.

My brother had a local doctor who confirmed the diagnosis of Moyamoya and said he would see my brother in a year all the while my brother was way off balance and misjudging the walls and running directly into them, falling on the ground and his speech was slurred. To this day, I am angry that my brother had to endure such terible trauma only because this particular doctor thought he was a Moyamoya expert and the insurance was more concerned about running a business and watching their bottom line than to properly treat a human in dire need of a Moyamoya expert.

The outcome was worth all the fighting and arguing because my brother was successfully treated by Dr. Steinberg in May of 2005 having both sides done via STA-MCA and I am thrilled to say that my brother today is doing very well thanks to Dr. Steinberg, Stanford and the entire Stanford Moyamoya staff. There is no question that without Dr. Steinberg and Stanford, my brother would not be alive today and we are eternally grateful to Dr. Steinberg and Teresa and Jill and the entire Stanford Moyamoya staff for giving my brother a second chance at life.

I know this must be frightening and overwhelming to you at the moment. Please know we are here to support you and Thomas through this journey and you are both in our thoughts and prayers.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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Emily

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bypasses: Nov 05 Apr
06

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Re: Who do you believe!?
Reply #5 - Mar 4^th, 2008 at 10:02pm

Quote:

“Tom’s brain has done the work of re-routing and wants to see Tom in one year unless he has another stroke or brain hemorrhage.” That’s unbelievable!!! That immediately tells me and anyone who knows about MM, that this doctor has absolutely NO experience with MMD!!!! My God, wait until he has a stroke or hemorrhage??
Mar

funnily enough my dr said the same thing to me... i've had two surgeris but still have more severely blocked arteries that require (are supposed to require) continuous monitoring.. but my dr said (after he'd missed my appointment anyway) "see you in another year unless you have a stroke.... and we wont do anything for you unless you have a debilitating stroke"

reassuring isnt it!!

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moody

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Re: Who do you believe!?
Reply #6 - Mar 4^th, 2008 at 11:22pm

Hi Calee, I'm so sorry for what you and Thomas going throught. You're right about the confusing, I don't know what to tell you because Dr. Tamargo is my respecfuly doctor, I adore him. When I was dx on Jan 06, I refered to him by HMO insurance also, he look at my angiogram and told me I had moyamoya and I have my left side done on april06, and my right side done on november that year, he doen't like to have to surgery to close together because i was very weak at the time and( he like to give time for the heeling), how ever I did have Dr. Steinberg take a look for 3rd opion at the time and he told me it ok I don't have to surgery my right side, keep eye on it and it can be done years later. (my 1st opion is my neuro send to is doctor Kassell from University of Virginia whom is my insurance didn't want to pay, and he said the same thing with doctor Tamargo) I can sit here and tell you all day how wonderful doctor Tamargo is, and how sweet of his team also, and I would recomment my family member come to him if they're sick, but this is your call, you have to research more and learn more how each doctor have experience with this disease, (I don't know how to drag the web site to make link for you but if you google any doctor name, it will come up alot information about that doctor and make your judgement)

Please keep us post, I will keep you and Thomas in my though and my prayer.

Hug
Kieu

Yesterday is past, tomorrow is future, today is the gift, that why we call it present.

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rmbielawa

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Re: Who do you believe!?
Reply #7 - Mar 5^th, 2008 at 6:05pm

My son, Kyle was diagnosed April 25, 2006 (he was 8yrs old). Our neurologist said "he has evidence of moyamoya" come back in 2 months and we'll do another MRI. Kyle woke up the following morning unable to talk, that was it! I went on-line and the first website I opened was this one! I emailed Dr. Steinberg; he emailed me within hours; and Teresa emailed me at the same time. I overnighted Kyle's MRI scans to them. They got them on a Saturday and Dr. Steinberg called me that Tuesday morning and asked if I could have Kyle on a plane tomorrow; he'd do his first surgery Friday! YEP! Unbelievable! I knew at that moment on the phone that Kyle was in terrible danger of losing his life! So, without thinking, I made all the arrangements in two hours (I have 3 other kids, too) and we left Wisconsin and were in San Jose at 10:30am the next day. Kyle had both surgeries within 5 days of each other. And, now we will be celebrating 3 years post-op this May! Thank God for Dr. Steinberg and his team. AND, even though my insurance paid all but the $2,000.00 co-pay, I would have paid the entire bill somehow! My son is worth it.
Renee

Kyle's forever grateful, Mom.

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Reagan

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Re: Who do you believe!?
Reply #8 - Mar 5^th, 2008 at 10:53pm

I want to you to know that I had two opininions actually three if you count the special radiologist who diagnosed my moyamoya. All three opinions were different. I have heard everything to wait until you have a stroke and the moyamoya vessels will grow stronger and support the blood flow. I was diagnosed on January 9, 2008 in missouri and just had a bypass on my left side 8 days ago here at Standford. My family and I are planning to leave Friday to fly back home. When Dr. Steinberg performed my bypass last Tuesday the 26th (just a week ago) my blood flow went from negative (flowing in the wrong direction) to 30% increase with the bypass. Go with your gut. I made up my mind that I was at peace with Dr. Steinberg and it didn't matter if I had to work with the hospital to pay my bill, this is where I had to be. I'm still recovering, but I know this was the best decision I have ever made in my life. It was tough and it happened so quick, but its worth putting this behind me for now. I am 28 and have two small children (3 and 1). My advice is to work with your insurance. Most of them will try to work something out. If not, see what Stanford can do for you. Mine agreed to pay in network in the in end. All I will owe is 250.00 for hospital admissions and some other minor copays. This is just a drop in the bucket compared to life. Dr. Steinberg has the best bedside manner. Teresa, Jill, Jolie and even the nurse who removed my staples today were great. I can't thank them enough for their patience, reassurance and caring about there patients as if they are all individuals. This has made this whole process a lot easier on my enitre family as we have spent the last 16 nights out here in California. I hope this helps some.

Reagan

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calee

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Re: Who do you believe!?
Reply #9 - Mar 13^th, 2008 at 10:57pm

Thank you all for taking the time to write . . . I wanted to wait until I had something worthwhile to let you all know.

We appealed the decision to deny Evaluation and Treatment with Dr Steinberg from Tommy’s HMO last week on Wednesday. Whoever read our appeal decided it should be expedited and scheduled a Conference Call for the following day at 2pm. About 15 minutes after we hung up our Authorized Representative called us back to tell us that the Committee’s decision was to overturn the previous denial. They said that the specific reason for the decision was that although services were available within the HMO, they were not able to confirm that the experience and outcomes of participating providers were comparable to Dr Steinberg. Therefore they determined it was medically necessary for Tommy to go out of network.

We’re flying out to Stanford on March 26th for Surgery on April 2nd so please keep us in your prayers they seem to really be doing the trick!

Thanks so much for all the support!
Carol

PS: Special thanks to Jill and Teresa!

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pasnblu

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Re: Who do you believe!?
Reply #10 - Mar 14^th, 2008 at 12:16am

Hi Calee and Welcome!

I was in an HMO as well (still am) and until I was given a case manager, I was getting nowhere. I think she must have read the documentation from Dr Steinberg and Theresa and realized it was a no brainer (pardon the pun). I got the call from the Case Mgr about an hour after a call from my insurance saying I had been denied follow up tests at UCLA, who I was referred to by my in network neuro in Orange County. The biggest lesson I learned, it stick to your guns, be a pest, don't wait for answers, search for them! It sounds like you are on the right track and I can tell you first hand, you are in the best hands. My two surgeries were in July of 2007 and I am not going to lie, there were some moments I had my doubts, but everything came through with flying colors.

Best of Luck
Sandi - class of 2007 Wink

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cass/kate

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Daughter Kate has moyamoya.

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Re: Who do you believe!?
Reply #11 - Mar 14^th, 2008 at 4:15pm

Dear Calee -

This is wonderful news!! Dr. Steinberg is awsome and Teresa is an angel. As for Jill, she and her daughter Tara (has MM) were mentors to our daughter Kate (23 with MM) when she had her 2 surgeries two and a half years ago. She had the direct Sta-mac bypasses, as Dr. S believes (as do we) that these are much more effective in an adult brain that has stopped normal growth. Kate had some number deficit (had three strokes) but that has completely reversed!! (Last semester she made straight A's, including statistics, finance and financial management.) She will graduate from college this year, only one semester behind! Words don't describe my love and thanks for the wonderful people at Stanford.

We will be thinking and praying for Tommy now and in March. Keep us posted. I believe you are doing the totally right thing.

Hugs and prayers,

Cass, Kate and Jon in Texas

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Lore

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Delaware, USA, usa, 419, 133, OH, Ohio
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Re: Who do you believe!?
Reply #12 - Mar 14^th, 2008 at 6:16pm

Hi Carol,

Good job! Sounds like you have a smart and caring HMO. They were zeroing in on the outcome. They know that although it may be initially more expensive that in the long run it will pay off not only from a financial perspective but also for the betterment of Thomas' health.

Thomas is in good and caring hands with all the Stanford MM staff. Stanford has MM treatment down to a science and everything falls into place like clockwork. It's amazing!

Please keep us posted on Thomas and know that you are both in our thoughts and prayers. We are all here to support you through this journey so please don't hesitate to ask any questions.

Hugs,

Lore

"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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KTiller Senior Poster Offline Posts: 355 Freeland, USA, usa, 51, 28, WA, Washington Gender:	Re: Who do you believe!? Reply #13 - Mar 14^th, 2008 at 10:13pm Hi Calee - I'll remember to say a prayer for Tommy on April 2nd. Your son is lucky to have you - you're a great Mom. Best wishes to you all, Kim
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moody Experienced Poster Offline In all the thing I lost I miss my mind the most. Posts: 207 richmond, USA, VA, Virginia Gender:	Re: Who do you believe!? Reply #14 - Mar 16^th, 2008 at 5:20pm Hi Calee, I just want to let you know that Thomas is in my prayer, every thing will go well, the surgeries will be done and over with before you know it. Take care and keep us posted. Kieu
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Skay Junior Poster Offline I love YaBB 1G - SP1! Posts: 87 Evansdale, USA, usa, 323, 119, IA, Iowa Gender:	Re: Who do you believe!? Reply #15 - Mar 16^th, 2008 at 11:05pm Hi Calee, I will be saying an extra prayer for Thomas and your family April 2nd. As everyone tells you, it will be over before you know it. Godbless and keep us up to date. Sharon
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Who do you believe!? Reply #16 - Mar 18^th, 2008 at 9:26am Hi Calee - Nice work in dealing with the insurance company! I'm glad everything worked out and that Thomas can get the care he deserves! Your entire family will be in my thoughts and prayers! -Shari
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