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About to be diagnosed (Read 8357 times)
jadleybray
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About to be diagnosed
Oct 9th, 2012 at 11:52pm
 
Little history on my wife.  Asian, 100% Korean, adopted at 8 months, no family history.  Raised in the states and we've been married for 7 years. 
  About 4 months ago, she mentioned that she had a "numbness" in her left arm a couple times.  Then another episode including her left leg.  She dismissed it the first couple times but finally just happened to mention it to me.  I, lovingly of course, told her to go to the doctor.  I silently suspected it was a sign of a stroke and wasn't amused she had dismissed it and not said anything.
  So fast forward to today.  Cat Scan, MRI, brain wave test (can't remember what its called) and several trips to OHSU (Oregon Health Science University-Portland Oregon)  plavix medication in the meantime.  We met with a Neurosurgeon that basically called it out.  The cat scan showed it clearly (what appears to be MoyaMoya) on the right frontal lobe.  The scan shows the left clearly (normal blood vessels) and the right side vessel short and basically ends, with tiny clusters of "veins".   So far seems to be (in my mind atleaset) MoyaMoya symptoms and scans.
  Headed to OHSU Thursday for an angiogram that is supposed to clearly show what I suspect. 
  So basically looks as though surgery is most likely in the future.  Guess time will tell, as will I when the diagnosis is given. 

Brad
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hrsridermom
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Re: About to be diagnosed
Reply #1 - Oct 10th, 2012 at 8:20am
 
Brad, Hope you get good news but if she does have MM you have found a great group here.  Let us know how it goes.
Donna
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Destin's mom
 
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Arianne120
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Re: About to be diagnosed
Reply #2 - Oct 10th, 2012 at 9:12am
 
Hi Brad,

Like Donna said this an amazing site with so much information and amazing people willing to share their experiences as well as great doctors to care for your wife. Smiley Hope all is well... and God bless.
Arianne
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jadleybray
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Re: About to be diagnosed
Reply #3 - Oct 30th, 2012 at 6:47pm
 
Update.  Meetings with Nuerologist at OHSU went well, and we have since had an Angiogram completed.  However, it has confirmed what we suspected, MoyaMoya.
  Fast forward a bit, several more trips for pre-op visit, take blood, discuss medications in the mean time etc.  Currently on Plavix until surgery date.  Typically pre-op patients discontinue the plavix because of increased risk for blood loss during the surgery procedure itself and the inherent risk of lack of ability to clot.  Nuerosurgeon in this case, felt strongly that stopping the plavix may create a much higher probability of moderate to severe stroke prior to surgery.  He explained his first goal is to prevent strokes.  I concur.
  So on our visit 10-12-12 we schedule the surgery for 11-1-12.  Wife gets a phone call today from OHSU, gal says that the insurance has denied coverage!!  Currently waiting on a call from OHSU, apparently the insurance company (Nesika- Bureau Of Indian Affairs health insurance company) is supposed to speak with the nuerosurgeon about it and make a final determination.  We'll see what happens from here I suppose.  Real nice less than 48 hours till surgery and insurance can't figure this shit out.  I've got family driving in to take care of our kids for a week till we get home form surgery, then mother in law for another week at home to help out.  Pisses me off Smiley   Smiley
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Heath
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Re: About to be diagnosed
Reply #4 - Oct 31st, 2012 at 4:40pm
 
brad,  first of all, i wish your wife the best of luck with her procedure...stick with it on the insurance front--often coverage is denied because the carriers don't understand moyamoya, requiring the patient to coordinate between physicians to educate the insurance carrier
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'we are all born with a hint of madness--we mustn't lose it'--robin williams
 
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jadleybray
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Re: About to be diagnosed
Reply #5 - Nov 1st, 2012 at 8:15pm
 
I finally got some information from the insurance today, they are claiming the EDAMS procedure is not medically established in there journals therefor not covered.  I started another thread to discuss this particular option.  Since we found out so late yesterday that the insurance denied the surgery, we opted to cancel the surgery scheduled for this morning.  After a long day of gathering information, we rescheduled for Nov. 12.  Neither of us feel we want to risk a major stroke just for the sake of money.  Regardless, I will fight there decision and hopefully recover the expenses on the back side if need be. 
  In the meantime, I'm going all proactive on the subject.  I've done my research and disagree with there report.  So I took it upon my self and went straight to the man, Dr. Steinberg at Standford.  I've got the MRI, CT, Angiogram, and Ultrasound disc's on the way to him to review.  Hopefully all that can get to him by Monday as that is the day his staff reviews.  Tuesday is there patient follow up.  I guess we are in a bit of limbo till Dr. Steinberg calls.
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Amit
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Re: About to be diagnosed
Reply #6 - Nov 3rd, 2012 at 10:40am
 
Well,
Dr. Steinberg with do the by-pass. He is an expert on that procedure. I have been following your thread,  Insurance rejecting EDMAS is ridculus.. Can you get in touch with the Dr in Boston and in seattle? they always do the EDMAS procedure.. So they will be able to defend this surgical procedure..
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CandSBoat
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Re: About to be diagnosed
Reply #7 - Nov 5th, 2012 at 5:23pm
 
Dr Dogan at OHSU performed a EDAMS procedure on my wife(10/4/2012).  He was fantastic!  Can't say enough good things about OHSU.
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« Last Edit: Nov 5th, 2012 at 5:26pm by CandSBoat »  
 
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jadleybray
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Re: About to be diagnosed
Reply #8 - Jul 15th, 2014 at 2:44am
 
OHSU =  extremely good medical/surgical/nursing team.  Been quit some time since I've posted.  Back in 2012, I moved forward with the surgery for my wife even though the Cowcreek Band of Umpqua Tribe of Indians denied the coverage.  Good news is, Dr Dogan performed a flawless procedure!!!!  Wife has no, No issues whatsoever.  The Cowcreek Band Of Umpqua Tribe Of Indians paid out after I hired a lawyer to fight their ignorance.  Only cost me 15,000$ for something I had already paid for.  Some benefits package. (end rant).
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