Problems with Kaiser paying out of plan for Dr. Friedman

[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

[Jill Marie]

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


Hi Kurt,  Good luck with your decision Tuesday! You've done an amazing job trying to get what's best for you accomplished, I hope the doctors and the Insurance company help you achieve that.  Please let us know how it goes!  Jill Marie

[Pleasantonian2]

Well, I finally got this response from Dr Balough.  It turns out that he has a lot of experience with facial nerve issues -- not as specialized as Friedman and Schwartz, but really good nonetheless.  So, I decided to proceed with him.

If Kaiser had more transparency and I was able to see this from the start, it would have saved me a lot of time and stress:

.................................................................

BEN JAMES BALOUGH MD

Sep 5, 2023 at 06:55:00 PM
Message body:
Good evening
 
Let me see if I can answer your questions now that I am done in the operating room for today
 
.....
 
In regards to my background and experience, I have been a neuro otologist for 21 years.  I have performed somewhere between 7 and 8000 otologic surgical procedures over that time.  For the first 10 years I was the ear surgeon for the Navy Marine Corps in the West Coast receiving complex patients from all over the globe including severely injured service members from the war's.  Some of those had facial nerve trauma.  In addition tumors another tertiary level cases were sent to me.  As you know I now work for Kaiser Permanente in northern California and also have a large referral base frequently getting cases such as years of significant complexity or rare cases. 
 
Specifically when it comes to facial nerve surgeries I believe we discussed on the phone that tumors of the facial nerve or other facial nerve type specific surgeries are relatively uncommon.  My estimate was about 5 to 6/year specifically of facial nerve tumors or facial nerve decompressions for trauma Bell's palsy etc. 2 weeks ago as you know our office visit had to be postponed as there was another patient who needed an urgent facial nerve decompression.  Next week I will be assisting one of my partners in decompressing the facial nerve to access a tumor that is at the skull base so that tumor is similar to yours although it is outside the temporal bone not within the confines of the temporal bone but the approach is indeed very similar.  And of course I have your case this week so that is 3 cases within the past month that is a bit more brisk pace than usual.    So 3-5 cases of various types and an average year going back over 20 years at 60-100 cases similar to yours
 
You also asked success rate success rate is a bit of a difficult question to answer because all these cases are different.  In terms of facial nerve decompressions from trauma did see a gentleman last week that I operated on back in February he had a bullet wound to the base of the skull severing the facial nerve which required exploration and repair he had a very good outcome of the House-Brackman grade 3 9 months or so after surgery.  Other cases that involve tumors may require resection of the tumor with sparing of the facial nerve or require transection of the facial nerve to remove the tumor.  In your case we are not removing the tumor rather just biopsying it as we discussed and then decompressing the rest of the facial nerve to prevent progression of the facial paresis.  Thus each case and the expected outcomes are different depending on the underlying pathology initial facial nerve grade and treatment plan.
 
The most important thing for you I think is to arrive at a diagnosis as soon as possible once we have a diagnosis then additional planning for treatment as well as prognosis can be made.  I am sure this is similar to what Dr. Friedman provided when you spoke with him as well as Dr. Tsai and Dr. Yoshikawa. 
 
...
 
In terms of the surgical team typically there is a anesthesiologist or certified registered nurse anesthetist a circulating nurse scrub technician and myself the surgeon.  We are teaching hospital so there are residents around, but none are assigned to my room on Thursday as it is a add-on case and not a regularly scheduled case. 
 
I hope this answers all your questions I look forward to meeting you in person on Thursday let me know if there is anything else I forgot
..........................................................

Surgery went well -- I have a benign facial nerve schwannoma.  My facial function is improving every day.  I started taking Nimodipine pills a couple of days ago and that seems to be helping a lot.

[MarlaB]

Congratulations Kurt! Welcome to the other side.

I hope you continue to heal completely.

Marla B.

[Jill Marie]

Hi Kurt,  I'm glad to hear you had the biopsy, so what's next?  How sad that you had to spend all that time and stress on who should do the biopsy when in the end you learned that Dr Balough has a lot of experience with facial nerve issues. Take Care, Jill