First of all, thank you DJ for setting up this site.  It is a tremendous comfort knowing that others can identify with me.

I belong to an HMO who insists that they can do the surgery, as well as any other specialist.  I am very uncomfortable with this.  I am not doubting the doctors' expertise in doing the procedure, however, I am concerned that should a complication arise, will the doctor have the experience to address this.

I have attempted to contact Stanford and the Cleveland clinic to get a 2nd and 3rd opinion.  However was told that I need to be an actual patient.  Can anyone assist me with getting a 2nd opinion with Stanford or elsewhere?  I'd like to send my films and files for others to take a look and I'd like to know if any neurosurgeon can do the job.

Thanks a bunch!
Pooh

Hi
I have moyamoya and have already had my first surgery and I am struggling with my insurance to back out to California to get my second surgery. I have consulted with many neurosurgeons and can honestly tell you that any surgeon will not do.It is important to get the best medical care possible. Good Luck with your search.
                                                                 freckles

I have to say that I feel VERY STRONGLY about this issue with the insurance companies.  (They make me so angry!  )  I am also going to war with my insurance company - I also currently have an HMO.  I had my PCP (primary care physician) issue a referral for my visit to Dr. Scott in Boston.  Of course, because this is out of state, my insurance company (keystone health plan east in PA) denied it and gave me an alternative neurosurgeon to visit.  Well, my neuro hadn't heard of this other doctor.  I called the doctor that the insurance company suggested and found out that he only treats an average of 2 to 3 moyamoya patients per year and has only done 2 surgeries in the 10 years that he's been at his current hospital.  This doctor is not a valid alternative for me.  I'm appealing the insurance company's decision and when you do that, you get a patient advocate.  I promptly called my advocate and gave her this information.

My appeal is being considered a grievance - meaning, I'm stating that it's medically necessary to go out of the network.  The last update I got was that it was going to be reviewed by an independent counsel of doctors and I should be hearing a decision soon.  Dr. Scott's office also said they would write any necessary letters to establish is expertise and help out any way they could.

My advise to you is to appeal your insurance company and keep on top of it - saving any correspondences, names, dates, etc.  Good luck!

pupuki wrote on Nov 8^th, 2003 at 12:33pm:


Absolutely wonderful news Pooh!  Like I said in my earlier post:


DJ wrote on Nov 6^th, 2003 at 11:50pm:


I can not say enough about what Dr. Steinberg has done for Moyamoya sufferers and families from this site!  When I first emailed him back in 2001 when I first was diagnosed with Moyamoya, I also recieved an email from him within 24 hours saying he would treat my condition.  I know several others from this site have had the same experience with him.

I honestly believe I would not be here today if it were not for Dr. Steinberg and his willingness to reach out.  He is an incredible person!  He is an angel!

Please let us know how it works out for you Pooh!

Hey Sharon,

Great to hear Dr. Steinberg is working on your behalf!  I hope your HMO understands the importance of getting a surgeon experienced with Moyamoya to treat you!!  Please let us know how it works out!

Stanford does have some public computers downstairs in the cafeteria you can use plus, you can dial up to the internet with a personal laptop from your room after surgery if you have the capability to dial up to AOL or something like that.

You can also get on the net from the ICU (like I did) after your surgery if you can talk your ICU nurse into pulling over one of their computers!  LOL   

If you do end up making it to Stanford, let me know...  I worked a "special deal" for people from this site at a Comfort Inn a few miles down the road from the hospital that has free, high speed connections in each room so you can connect with a laptop after your released.  They've offered $65 a night to anyone from this site that makes the trip out to Stanford (normal rates are $80+ a night).  It's a very nice, clean, safe place to stay.  I don't think you'll find a better rate anywhere near the hospital!

If it works out and you're interested, let me know and I'll give you the details about the hotel.

Let us know how it goes with Dr. Steinberg!



DJ

There was a conference on my case on Monday evening.  The surgeon we were consulting with first told my husband and I that if he were to do surgery, he would perform the overlay or the indirect surgery.  He advised against the direct bypass because my brain is starving for blood, a direct shot of blood would cause a brain hemmorhage, which he wouldn't be able to control.  However, he felt it best if I work with nature and became more disabled or had a stroke first and then he would operate on me. Ludicrous!!

Then, Dr. Steinberg said that he would do the bypass, and explained how he would do it in medical jargon.  Now the Kaiser Neurosurgeon says he can perform the same surgery that Dr. Steinberg does and has denied my request to go to Stanford. 

I have to take it up another notch and do a medical appeal.  In the meantime, I am meeting with another specialist in Hawaii, who is highly recommended.  But am still hoping to have Dr. Steinberg perform the surgery if I can wing it.

Happy Thanksgiving everyone!  Thank you DJ for creating this site!

~Pooh

Hello, and first of all good luck!!!!!!  Secondly, Timothy's surgery was done at the University of Wisconsin by Dr. Iskandar, so i can not help you out with your question about stanford.  Once again, Good luck

Hi Freckles!

Thanks for your words of encouragement.  Yes, I know that prayer works.  I have seen another surgeron that Kaiser has suggested.  He was very good and very thorough.  He said everything that Dr. Steinberg said, even without knowing what Dr. Steinberg said.  However, at the end of my consultation, he said that he elects not to do my surgery.  He stated that I needed to go to someone who does this type of surgery frequently and was very good at it.

I was really thankful that this surgeon is honest and said what he did, which I believe will help my case.

Good luck with your battle to get to Stanford, too! 

Aloha, Pooh

I would have to agree with what Tommyb said.  If you went through the the HMO's recommended doctor and that doctor said he wouldn't do it himself for experience reasons, I would think your HMO would pay for the out-of-network doctor due to medical necessity.  Perhaps the doctor the HMO recommended would be willing to contact the insurance company with something in writing.  Again, good luck!! - shari