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lflores

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addison, USA, IL, Illinois
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very frustrated
Sep 22^nd, 2008 at 7:23am

My son has been dx with mmd for over a month. He is asymptomatic however because he has cerebral palsy, no one knows what is the mmd or cp. Anyway, we need to see a Dr. Yamini at U of C in Chicago because that is where our insurance sent us (Blue Cross Blue Shield HMO). The doctor said it would probably mean surgery but would need to do an MRI with profusion. When we had the test done, the nurse called back to let us know that the test was not done, that they did a regular MRI/MRA. A week later, she called and said that is was done but not very clear and that another test will have to be scheduled. In themean time, she said that it looks like Brians brain is getting enough oxygen from the collateral vessels, (perMRI report) and that surgery may not be needed at this time.!!! I told her what I know about that and she contradicted me! The doctors only meet on Wednesdays to discuss cases, so waiting is getting to us here! I'm supposed to trust these docs with my sons health? In my opinion, the test not being clear is a cover up for someones screw up! I would love to go to STanford (already sent him info) but HMO is hard to get things covered like that.

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Mar

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Re: very frustrated
Reply #1 - Sep 22^nd, 2008 at 9:19am

I feel you have a right to be concerned. Something doesn’t sound right, because thinking those collaterals are doing the job is the danger! Those collaterals are in fact helping with the blood flow for now, but for how long?? Those collaterals are ABNORMAL, fragile and weak MM vessels, and if they don’t see the danger in waiting, omg, that’s scary! This is a progressive disease.

I definately see your concern and your frustration. All I can say is, be aggressive and fight to get the answers that make sense. Don't be affraid to stand up to the medical personnel with the facts of this disease, and continue to arm yourself with knowledge, and then they won't be able to steer you wrong.

I hope and pray you get the appropriate care and treatment needed for your son.

Mar

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KTiller

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Freeland, USA, usa, 51, 28, WA, Washington
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Re: very frustrated
Reply #2 - Sep 22^nd, 2008 at 7:56pm

If you want to go to Stanford, then talk to Bob in Dr. Steinberg's office. He knows the insurance company lingo. He'll talk to your HMO for you. He can work miracles when it comes to getting a difficult HMO to approve the surgery in Stanford, even though it may be out of state and/or out of network. Give him a call.
Best wishes,
Kim

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LisaH

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Be thankful in all circumstances

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ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: very frustrated
Reply #3 - Sep 22^nd, 2008 at 10:03pm

Funny, I just met this Dr. Yamini in the cafeteria at U of C last week. I've been going there for years, never heard of him and was curious.

Anyway, U of C is not lacking in knowledge or or patients of MM. However, it does sound to me that the wrong test may have been done. What nurse called you back? Dr. Yamini's nurse? I am extremely surprised at the "getting enough oxygen from the collaterals" response! The neurologists and neurosurgeons that I have met with there all know better so I don't get where that is coming from. I am floored really. Regardless, I would definitely switch doctors and see Dr. Frim there instead. He has a lot more experience. I know others here on the board have had great experiences with Dr. Frim. Keep trying to get to Stanford too.

Oh, and I wanted to ask who ordered this test to begin with? I usually have CT angios, CT perfusions or SPECT. Something just seems off to me.

Best wishes and let me know if I can be of any help at U of C.

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"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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lflores

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Re: very frustrated
Reply #4 - Sep 22^nd, 2008 at 11:40pm

Thanks,
Dr. Yaminis nurse kelly is who I have been dealing with. We needed a CT scan with profusion but they did another MRI/MRA instead. Now that I am talking more with my referral person at my doctors office, it may have just been a mix up between the radiologists and what the referral said. I guess our referral has said to do an MRI/MRA not sure why. Dr. Yamini ordered the test.

Do you go to U of C for you or your child? Dr. Yamini seemed like a very knowedgeable doctor at the time, but I really think his nurse talks out of her ..... head.

Thanks,
Linda

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amy1992

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Re: very frustrated
Reply #5 - Sep 23^rd, 2008 at 1:38am

I thought the only way to definitely diagnose MM was to have an angiogram done? I may be wrong. With your insurance what I have heard is that alot of doctors can do the surgery and are good at ir, but Dr Steindurg and Dr Scott are the only dr.'s that have done enough surgeries to actually have statics. Now that is only what I have heard. Some dr.'s are not very familiar with this disease, so they don't really know what tests to do. My dr' old be we were gonna try channel blockers and that the surgery would not workon me because all my main arteries were blocked and that surgery was unsuccrssful. so how the heck is 95% unsuccessful. We'll 95% is good enough for me. Your family is in my prayers. E-mail your congressman and don't stop there!

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Shan

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MM Survivor ~ May 27,
2005

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Honolulu, USA, usa, 376, 346, HI, Hawaii
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Re: very frustrated
Reply #6 - Sep 23^rd, 2008 at 3:40pm

Hi Amy,

I understand that you have received much of your information from "here say" but at least you are doing your best to find out more about this "rare" disease. As for doctors diagnosing MM, they do NOT have to see a patient's angiogram results to make this diagnosis. I was diagnosed based on my MRI/MRA results. I believe medical professionals who are familiar and experienced with this disease are able to appropriately make this diagnosis based on their experience, education, and research of this disease.
As for MM experts, I believe it all depends on who you speak to. All of us who have successfully had surgery, whether a bypass or EDAS, will attest to their own medical professional's expertise. And why wouldn't we? They literally saved our lives! ; Grin

When people come to me and ask me for my opinion or advice, I don't try to steer them in one direction and try to convince them to make the travel to North Carolina as I did--to my neurosurgeon. I share my story and personal situation.

I do; however, press upon them the importance to seek the opinions of MM experts and tell them to make their decision from there. I also understand that we all have other things to consider such as finances, family, etc., which may prevent someone from traveling across the country... I do have to admit that I firmly believe in what I was told by my neurologist...

"it's important and worth it to have it done right, the first time"

as he sees many MM patients who have received surgery from various surgeons, including those who are considered by "MM experts" and who have had to return for additional surgeries Undecided

Sometimes things happen...we are all individual cases.

You mentioned your dr. being old...and him saying surgery wouldn't work on you. Again, I would recommend you seeking additional opinions, and soon. Wink

Remember, you DON'T need to have an angiogram to be diagnosed. If you have MRI or MRA films, that should be sufficient (to obtain opinions and be properly diagnosed). Call the offices of the neurosurgeons you are interested in, and they will provide you with additional information. ; Grin

Take care,
Shan

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« Last Edit: Sep 25^th, 2008 at 1:54pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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Shan

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MM Survivor ~ May 27,
2005

Posts: 849
Honolulu, USA, usa, 376, 346, HI, Hawaii
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Re: very frustrated
Reply #7 - Sep 23^rd, 2008 at 3:53pm

we all have the gift called "gut instinct." if you feel that something is not right...it probably isn't. living in America, we have the FREEDOM to seek opinions from as many medical professionals (in this case, preferrably MM Experts) we so desire....

some may hesitate as to not offend their current medical support team...but it is YOUR life! i don't think we can stress it enough, as i've seen many of us in numerous threads continue to encourage others to seek the opinions of MM experts. trust me, it works, many of you here are a living testimony!

do not settle for less...especially if your GUT is telling you that something is NOT right! ; Grin

okay..that's all...

the end. Wink

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« Last Edit: Sep 23^rd, 2008 at 7:51pm by Shan »

"Love, Accept And Respect All Things And All Situations In Life … They Are Especially&&Designed For Your Personal Learning" ~Howard Willis

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DJ

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Been there, done that...

Posts: 721
Wichita, KS
Gender: male

Re: very frustrated
Reply #8 - Sep 24^th, 2008 at 8:27pm

Shan wrote on Sep 23^rd, 2008 at 3:40pm:

As for doctors diagnosing MM, they do NOT have to see a patient's angiogram results to make this diagnosis.

Shan wrote on Sep 23^rd, 2008 at 3:40pm:

Remember, you DON'T need to have an angiogram either. If you have MRI or MRA films, that should be sufficient.

And my experience would be to say that, in the majority of cases, an angiogram IS required to make a diagnoses of Moyamoya.

Shan, I would think that your diagnoses with only MRI/MRA results would be the exception rather than the rule when concluding a diagnoses. If there was one thing I would hope someone new to the site would understand is that they SHOULD have an angiogram to confirm a diagnoses of Moyamoya.

Here are just a few examples of what other resources say about angiograms:

Stanford University

http://www.stanfordhospital.com/clinicsmedServices/COE/neuro/moyamoyaDisease/default
Cerebral Angiogram - This is the definitive test that confirms the diagnosis of moyamoya.

Brain-aneurysm.com

http://www.brain-aneurysm.com/mmd.html
A regular CT head scan and MRI head scan (with diffusion weighted imaging or DWI sequence) can show strokes and hemorrhages associated with moyamoya disease. A CT-angiogram or MR-angiogram may show the abnormal vessels (blockages and microvessel proliferation) and any aneurysms associated with this condition. However, the gold-standard for evaluation of moyamoya disease is cerebral angiography.

Wikipedia

http://en.wikipedia.org/wiki/Moyamoya
Conventional angiography provided the conclusive diagnosis of Moyamoya disease in most cases and should be performed before any surgical considerations.

Columbia University Medical Center

http://columbianeurosurgery.org/ct/moyamoya_disease.html
Computed tomography (CT) and magnetic resonance imaging (MRI) scans may provide initial indications of the disease. If the disease is suspected, cerebral angiography, a test that creates images of the blood flow through the brain, is conducted to establish the diagnosis

You can see more of my thoughts on what tests should be performed by reading my post here: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1086889571

DJ

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Adversity does not build character... it reveals it... I help my neighbor and my neighbor helps someone else. Life is a wonderful circle!

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amy1992 New Poster Offline I love YaBB 1G - SP1! Posts: 25 Columbia, USA, MO, Missouri Gender:	Re: very frustrated Reply #9 - Sep 24^th, 2008 at 9:06pm Thank you DJ for making that clear for everyone. I wasn't sure if that was the proper way to diagnose.
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lflores

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addison, USA, IL, Illinois
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Re: very frustrated
Reply #10 - Sep 25^th, 2008 at 11:20pm

My son is not going to have an angiogram (at least not yet) he is having a ct scan with profusion on Tuesday. This was set up today. This is to check his actual blood flow throughout his brain. We know that there are collateral vessels flowing to the right side of his brain (where the MM is) however we want to know in more detail.
Thanks all for your input. I will let you know how his test turns out next week.

Linda

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LisaH

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Posts: 261
ArlingtonHts, USA, usa, 358, 120, IL, Illinois
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Re: very frustrated
Reply #11 - Sep 26^th, 2008 at 12:11am

Linda,

I am an adult with MM. Unfortunately, I have many odd medical issues so I'm at University of Chicago a lot.

Here is some info about the CT perfusion:
Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

I just had one, along with a CT angio, a week ago and it took about 45 minutes total (not counting the wait time). Nothing to it. One of the best things about U of C is that they have some top of the line diagnostic/radiology equipment. I will never again have to suffer a traditional angio. I've called many other hospitals, closer to home for me, to see if they offer the same tests and they don't. Until they do, my husband takes the day off of work and away we go for the day to U of C. If you have any questions while you are down there for this test (or any other tests) try to talk to Cliff. He's very nice and in charge of something or other down there and will be helpful.

I wonder why they can't do the CT perfusion and the angio at the same time for your son as they do for me? Maybe it's different for children? It would be nice if they could do that- one less trip for you. Maybe you should ask before you go. Can't hurt to ask. Sometimes the doctors are just not thinking. They forget we also have lives outside of all this!

Good luck and do keep us up to date.

Lisa

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« Last Edit: Sep 26^th, 2008 at 12:14am by LisaH »

"Two roads diverged in a wood, and I--I took the one less traveled by, and that has made all the difference." - Robert Frost

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