Wow, a lot has happpend. Laura feels much better now, the fever is gone and she is up and about.

The Insurance company has not been helpful just confusing. All I want is to get Laura seen as soon as we can. Right from the beginning they have been giving me problems. They said they want me to go to Strong in Rochester, where Laura could be seen on Monday. Atty general, then put me through on a conference call with the doctors asst. at Strong. The first question I asked her was,” how many Pediatric patients with Moya moya has he treated?”  (mind you the Insurance company called him a “Moyamoya specialist” they had in network.)

She said maybe 1-2 in his ENTIRE career ! 

so glad the Atty heard that and what Ins. said. 

out of the blue Albany Doctors called (yesterday) and said they could see her today. I asked the Ins. if they were setting her up with Albany now, and they had no knowledge and told me it was unrealistic to get her records to Albany by today. SO i am still going to try to get to Albany today and PERSONALLY bring her records ,first picking them up myself.

What a mess.

Good thing I am focused (With the help of the Atty General) .  

Insurance took me in circles yesterday, trying to get me to say if the doctor I took her to in network, treatment would be the same as syracuse, that I would do what they suggest.

The answer is simple ..

Whatever BOSTON says I will go with THEY are the specialists in this rare disease, OPERATING ON OVER 400 SUCCESSFULLY!

I mean vs. 1-2 in an entire neurosurgeons career?  The doctor in SYRACUSE wanted to transfer her directly to Boston already, then Ins. stopped them and wanted to know what they would do.

The Stent.

http://jnis.bmj.com/content/3/2/160.abstract

I showed her this first asking if this site is a good site, she said yes that they use that site. THEN showed her the article above.  she said “well she is already at risk for bleeding in the brain” . Then she dismissed my concerns. 

WHY INCREASE THE RISK?!?!?!???

read the end result of the stent placement as recent as 2010 in this particular case. (the link above)

Boston no where on their site mentions the use of the stent as the recommended treatment.  (that I can find)

http://www.childrenshospital.org/clinicalservices/Site2156/mainpageS2156P0.html

I am still going to Albany for Insurance to get THE SECOND Opinion for them! (or third)

meanwhile wasting time.

It has been since MARCH Laura has waited , having more strokes in the meantime.

This tells me and any other reasonable person she needs the treatment NOW, and that the disease is progressing further everyday.

My opinion is to go with what Syracuse FIRST wanted and that is directly to BOSTON.

After the Neurosurgeon in Syracuse mentioned the use of the stent, the NEUROLOGIST that wanted to send her to Boston right away, took me aside, away from everyone, and low under his breath said that I am entitled to a second opinion and he would send her records and scans directly to Boston then for me. (where the center of  SPECIALTIES is for this RARE disease.)  He was concerned!!

Just got off the phone with her Primary care and since I had to wait on the Ins. yet again yesterday, I couldn’t get back to them till today, (Ins. called me at 6:30, and the doc office closed at 5) on Albany, so we have to wait to been seen until Monday at 10am in Albany.

But STILL it is sooner then what the Ins. could get me in Rochester.