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Problems with Kaiser paying out of plan for Dr. Friedman

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Pleasantonian2:
I have a Facial Nerve Tumor that needs a biopsy according to Kaiser (Drs. Tsai & Yoshikawa).  Dr. Friedman at UCSD confirmed the need for biopsy, however, he wants to enter through my mastoid and decompress the tumor and take a sample at the same time.  Kaiser recommended taking a biopsy through my ear canal. 

According to this short video clip, this should never be done:

https://youtu.be/h3HTFTWlKEo?feature=shared

transcript:
9:52
…  “so the general rule if you're not sure what it is, is to never biopsy this area because you can cause a facial nerve palsy just by performing this a simple biopsy”

For the full video:
https://youtu.be/h3HTFTWlKEo?feature=shared

I've researched reviews, discussion groups, technical papers, etc. and I get almost no data to support the competence Drs. Tsai, Yoshikawa, or Balough -- especially in the case of Facial Neuromas.  In fact, searching for any of these doctors on this forum yields ZERO results.  Yet, Kaiser insists that they are competent to treat me.  How can this make any sense? 

Dr. Tsai tells me there is ~50% chance of facial paralysis from the biopsy alone and Dr. Yoshikawa said the biopsy would almost certainly degrade my facial nerve function.  On the other hand, Dr. Friedman said his approach is low risk. 

Dr. Tsai has no Facial Nerve Tumor experience, Yoshikawa has had a couple of cases with poor outcomes regarding paralysis.  Dr. Friedman has had many successful cases...

Should I just trust that Kaiser will take care of me and accept their coverage or should I pay out of pocket for Dr. Friedman and go broke?

I'm very frustrated!  If anyone can share their experience and advice, I would really appreciate it.

Jill Marie:
Hi Kurt,

I had a Facial Nerve Tumor removed 30 years ago.  I didn't need a biopsy and don't understand why you do?  Why not just have the tumor removed?  Thankfully Dr. Friedman agrees so it's not just what Kaiser wants. Either way it sounds like you would have Insurance issues just as I did. 

I was diagnosed with an Acoustic Neuroma by an ENT. Dr. Charles Mangham of the Seattle Ear Clinic was recommended to me for surgery so I made an appointment.  My Insurance company then told me he was out of network, I couldn't afford that so I called to cancel my appointment.  They wouldn't cancel it tell they spoke with the doctor.  I soon received a call saying that everyone involved in my surgery - hospital, labs, anesthesiologist, doctor assistant, etc. agreed to do the surgery for what my insurance paid them.  I got that in writing and kept the appointment.

I didn't have a month before surgery pre-op appointment as my doctor recommended because I unfortunately had surgery on my broken leg instead, therefore I arrived at the hospital the day before surgery so the doctor could exam me.  He found that I had a Facial Nerve Tumor not an Acoustic Neuroma.  The doctor my Insurance company wanted me to go to had performed very few Facial Nerve surgeries.  As you can well imagine I was very grateful that Dr. Mangham had insisted he do the surgery.

I suggest that you ask for Dr. Friedman's help!  Ask him or someone in his office to provide your insurance company with information that shows that having the biopsy done the way Kaiser doctors want it done will unnecessarily cause damage to your Facial Nerve.  Tell him what you have told us, if you haven't already.  Send emails, make phone calls, write letters to anyone you think can help you convince the Insurance company to pay Dr. Friedman fully so you can have him do your biopsy.  I have battled with the Insurance companies before and won, it took a lot of time and work but I did succeed.  I even got the help of a newspaper that was trying to help people with Insurance problems.

Good luck and please let us know how you are doing!  Jill Marie

Pleasantonian2:
Jill Marie,

Thank you for your words of encouragement.  I've been working on this nearly full time for a couple of weeks now.  I've escalated this through Kaiser and CA DMHC.  I've given them a 48 page document stating my case with reviews and medical journal references.  I then followed up with the presentation video and more journal references that clearly showed the original surgery plan was outdated and dangerous along with references to the current best practice procedure that Dr. Friedman suggested. 

I spoke with and left messages with at least 7 Kaiser Grievance and Appeals reps and asked them for copies of the documentation they used to deny my request and also provide some type of documentation that shows the competence of the surgeons they claimed could perform the surgery.  I only received more rejection letters. 

After almost a month, CA DMHC never performed the independent medical Review (IMR) that I requested.  There was obviously some collusion between them and Kaiser, because they eventually gave me an appointment with Dr. Balough who offered the same procedure that Friedman suggested and told me he performs 3-4 related surgeries each week.  Honestly, Balough sounded very competent and compelling, however, I have no way of verifying his competence, frequency of performing related surgeries, or success rate.  Kaiser can just boldly claim competence without evidence (even when I proved the first surgical method was outdated and dangerous) and there is absolutely no accountability.

I currently have surgery scheduled at both Kaiser and UCSD and will have to make a decision on Tuesday.  Ugh!!!!

If you wiki Kaiser Permenente and look at their track record with kidney transplants, you will see how determined they are to avoid out of plan referrals.  The same group that I'm dealing with let a lot of people die rather than refer them to another medical provider.  Also, they have been cited for appeals violations dating back to 2015 that they haven't fixed.  It is cheaper to pain the fines than provide necessary care.  It is really evil.
I feel like I have a duty to stand up for patients' rights, but first I need to get this biopsy and decompression done.

Okay, enough of my ranting.

thanks,

Kurt

donjehle:
Thank you for responding on this thread, Jill Marie.  You are such an asset for our forums.  Thanks for posting again.

sg_way:
Hi Kurt,

Maybe you can see Dr. Erika Woodson in KP San Diego for your third opinion. She came from the top-notch Cleveland Clinic to KP San Diego last year to assume Dr. Roberto Cueva's (retired) responsibilities in skull-base surgery. If you do the search in this forum, you'll find nothing but excellent comments for both doctors. I've heard someone was referred to Dr. Cueva from KP Northern California so it may be worth a try. 

Good Luck!
Wayne

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