Michele from South Dakota has posted on the Surgens with bypass experence looking to go to the Mayo Clinic in MN. Her current nurologist IS HORRIBLE!!! She sent her info to Dr. Stineberg and when she showed it to her nurologist he LAUGHED at her!!!!!

My question is has ANYONE had DR. Stinegberg work with their insurance so she can get the prpoer HELP? And Can we get the info to Michele ASAP!!!!!
Becky

6 months ago my nuero told me I had 100% blockage on one side.    I went back 3 months later and told my nuero I was getting worse, now have symptoms on BOTH sides.  He then redid the MRA and diagnosed moyamoya.  He told me I needed to get my blood pressure under control and referred me back to my primary care Dr. for blood pressure mamgement.  In the mean time, I found this site and sent my MRA'a and MRI's to Stanford.  Eventually I got a letter back saying probable bilateral moyamoya, need an angio to confirm and and surgery on one side for sure, possible both sides pending the outcome of the angio.
Now, another 3 months later, I go back yesterday to my neuro, tell him I am STILL getting worse and he tells me it's because my blood pressure is TOO LOW now!  I am on the lowest strength medication there is, and it hasn't even lowered my BP any.  (I have been keeping a blood pressure log).  The numbness, loss of sensation, etc. is getting very unmanageable.  When I showed the neuro the letter from Stanford, he literally laughed and said of course he recommended surgery, he's a surgeon!    I asked my neuro if he thought I needed an angio (trying to get him to order one) and he said absolutely not, we already know what's going on in there.  It would be a waste.  My neuro appeared to be offended that I had sent for a second opinion, I also had a packet that I requested from NORD with me.  I wanted him  to know that I KNOW what I am dealing with here.  He has told me NOTHING about moyamoya, other than it's because I smoked for 20 years.  When I told him my 1st cousin had 2 strokes last month and is going to mayo, he aslo seemed offended/arrogant, etc.  He didn't seemed concerned at all about a possible family connection.  His plan is for me to decrease my BP meds and return in 3 months.  My symptoms are progressing so fast that I'm not sure I HAVE 3 months.  He also told me that there were surgeons at the same facility that could do the sugery, but when I asked for their names, he went off about how there is no proof the surgery helps and it could make things worse, etc. 
As far as me having surgery, I have no medical insurance and I DO NOT qualify for medicare  or medicaid.  I have covered all that under the financial resources section, so I don't want to repeat all that again, except to say South Dakota has some weird requirements and I do not qualify.  I also am  not YET disabled, which I have also covered in the financial resources section.  I appreciate all the care and concern by all of you who are also dealing with this disease.  If anyone has any new ideas...I'm game!!!  I do know that I am  not giving up.  I had to pull into a rest stop on my way home from my Dr. appt yesterday because my right side was "gone" and my left side isn't the side that was 100% blocked!!!  I KNOW I am getting worse, much worse.  ALso, in the past my neuro told me to lay down when I go numb, etc. so the blood can more easily get to my brain.  I am  now waking up in the morning with numbness.  Lay down, take an aspirin a day, and monitor my blood pressure for "treatment" is gonna kill me.  I could keep going on about my worthless Dr. but there would be no point, I just need some help!

Thank you to everyone!  Im not going to give up, thats for sure!

What a wonderful day!  I went to my family practice doctor today and explained to him everything that has been going on with my neuro in Nebraska and showed him the letter from Stanford.  He said if I was his sister he would recommend a third opinion.  I told him that is exactly what I want, and that I want to go to mayo.  He immediately sent a referral to the Mayo clinic in MN.  I told him I wanted to go to Dr. Meyer as Becky recommends.  I am waiting for mayo to call me to set up the appointment.  My doctor also told me he is not gonna charge me a DIME for anything I need from him...how many doctors would do that in this day and age???  I didnt get a bill from him last time I went to him, but I thought it was a billing error and it would catch up with me.  He said I have enough to worry about and won't charge me anything.  What an angel sent from above for me.  I am so greatful!  Thank you to all who have been supportive and offered prayers for me!  I feel like such a weight has been lifted from my shoulders, knowing I can finally get to a doctor that may be able to help me!  Again, thank you all.  I cannot express how helpful you have all been.  God Bless You ALL and God Bless Dr. Weber!!!

If something is too good to be true...IT IS!!!  Someone from mayo just called to get some information and let me know that they can't make an appointment for me unless they know that I have the $5,000 downpayment that is required before I can get an appointment with a neuro there.  Also, after I make the downpayment and get an initial consult with a neuro, if it looks like the downpayment will be depleted quickly, they will give me an estimate of costs and work out payment arrangements prior to care.  When I asked why their website says they dont refuse care to people regardless of their ability to pay, the lady just said that's not true.  She gave me a number that my doctor can call to ask their doctor if he would provide charity care.  If that all happens, and their doctor agrees, then it is sent for administrative review.  If the doctor agrees and the request passes the administrative review, I can get an appointment.  Its a good thing tears are free, I wouldnt have anything left.

The Mayo gave me problems too. They did a test that my insurance said was a hosplital where they called it out of network, but my surgery was done at a diffrent hospital down there that was in network. I had troubel getting them to play ball and say that the test before my surgey should be concidered in network.

Go up the aministration chain and find out why this lady said what she said. That is just silly it is a life or death situation it shouldn't be denyed!!
I will pray for you
Becky

OK, I saw someone posted on here about a Doogie Howser type Doctor at St. Joe's Hospital located in St. Paul MN and also a Dr. at the University of Iowa.  I found some email contact info for both, and sent each an email with a short overview of  my situation.  I asked if either hospital was aware of any Dr. or hospital that would be willing to help me in my situation.  I got an email back from St. Joe's right away.  Followed by a couple more emails and they called today.  Said they may be able to help, and that they absolutely would not refuse me medical care if I could not pay.  I also saw the mayo number on my caller ID, but have not called them back.  Now, today I got an email (actually 2) from the University of Iowa.   U of I said they are conducting a clinical trial and that if I participate my Dr. visits would be covered.  Is anyone familiar with this trial?  I am so thankful it is starting to look like I might have some options here.  The lady I spoke with from St. Joe's (Tess) said to not worry at all about the bills, we will figure something out.  How wonderful.   God Bless you all!