Friend just diagnosed, non-certified doctor assigned to operate - HELP!

[EEF4E]

Can anybody please give us some ideas as to how we go about obtaining a board-certified specialist in AN surgery while in the Kaiser system?  The surgeon that they have referred my friend to (she has an acoustic neuroma that is 2.5" long and 1" in diameter and it's pressing on her brain stem) is NOT board certified, has GUARANTEED her left side facial paralysis, and only performs this surgery maybe 8 times a year.

Is it possible to get referred to an AN specialist at another Kaiser hospital?  There is an amazing AN surgeon right here in our home town (Vancouver, WA/Portland, OR) that is outside of her network - is there some type of emergency petition that we can file with Kaiser to allow her to go out of their system?? 

She seems completely overwhelmed and has no idea where to turn.  She is about to schedule her surgery with this doctor, although she and her husband both feel it is the wrong thing to do - but they feel they have no choice. 

Any help you can give us with suggestions, etc., would be most appreciated!!!  Thank you so much............

[Jeff]

Hi,
My brother is under a Kaiser plan in Salem, OR. Just last week he had surgery at a Kaiser hospital in Los Angeles. The surgery was performed by Dr. Brackmann and Dr. Hitselberger from the House Ear Clinic, one of the world's premier centers for the surgical removal of these tumors. It took a little time to get the surgery approved, but I can tell you that the House doctors are worth the effort it takes to have them perform the surgery if that is the route that your friend needs to take. The surgery coordinator for the House doctor will contact Kaiser and make the necessary arrangements.  I would start by having a consultation with one of the doctors there. My brother uses Dr. Brackmann, wwhom he likes very well, and I use Dr. Friedman, whom I think is great. They review her MRI scans and call with a recommendation free of charge. Here is a link to the information: http://houseearclinic.com/acousticneuromaconsultation.htm

My brother also had an acoustic neuroma removed last year (he has bilateral tumors) by Dr. Cueva at a San Diego, CA Kaiser Hospital. He really liked him as well.

I hope this helps. Please let me know if I can answer any other questions.

Jeff

[EEF4E]

Thank you so much Jeff!  I'm print this information to give to her.  She is against going out of the area for the surgery but I asked her why??  She's 36 years old and she has family and friends here to help her with her children, and she and her husband can go out of state to get expert care - if that's what it takes to get the best treatment, DO IT! 

Thanks again for the information.  I'm open to hearing any other suggestions from anybody else.  Thanks so much...

Nancy

[Jeff]

You are welcome. I have had 2 AN surgeries myself, and personally, I would run from any doctor who guarantees facial nerve damage.

Best wishes,

Jeff

[Joef]

Yes ! I had my surgery there .. for large tumors .. its THE place to go ..

[dgrummer]

Just wanted to add …

Remind your friend that there is no HUGE rush to schedule the surgery – giving the size of her tumor.  She should consult as many doctors as she can and take the time to deal with the insurance. 

She may not have to go to House – but certainly should find a qualified doctor.  There are other doctors not in California – but they are the world leaders.  I’d do more research on other doctors in your area. There is no reason to rush.

It’s been 7 mts since my husband’s diagnosis in August.  His is 2.8 cm and is pressing on the brainstem and his surgery is next Thursday. Although I might not wait that long (the waiting has been hard) - but certainly take the time needed to reserach options.

I certainly wouldn’t let a surgeon pressure her into a surgery quickly – and I DEFINITELY agree I’d stay away from anyone who guaranteed facial paralysis.  There are way too many stories of folks with tumors even larger than hers that have GREAT outcomes!

[EEF4E]

GREAT NEWS!!!  I just heard that she has gotten a referral OUT of the system and to a specialist at OHSU, who she consulted with today.  The date will be set soon enough - and I'm just THANKFUL that she has an expert on her side. 

Thanks for all the support!!!

[Jeff]

Good news for your friend! Was she referred to Dr. Mcmenomee and Dr. Delashaw? If so, I can share that my father had an AN regrowth removed by them nearly two years ago. They had to "spend hours picking through scar tissue" protect his facial nerve, which they did well. His experience at OHSU was great.

Best wishes,

Jeff

[gdthoms]

Was it Dr. Delashaw and McMenomy? I have an appointment on April 7th to discuss my AN with Dr. Delashaw. I have also been in contact with Dr. Brackmann at House. The only problem with going to House is that as of Feb 01 Dr. Brackmann is no longer contracted with my insurance company. Would like to hear from someone who had their AN removed at OHSU. I am NF2 and Dr. Delashaw removed 2 meningiomas a year ago that were affecting my vision. Thank you.

[Larry]

Eef4e,

Treatment of an AN is a very serious one be it surgery or radiation treatment. I am from down under and have no idea of your insurance situation but follow the advice this forum gives for pre-treatment. And that is, get multi opinions, make sure you read various threads on here for advice and questions to ask (you can do searches for key words).

Make sure that all options of treatment are explored. There is a lot of help on this site and we will be able to point you in the right direction.

cheers


Laz

[Sanddollar]

Yikes!  Guaranteed facial paralysis??!!!

At one point my surgeon thought I might have a facial neuroma and even under that scenario I wasn't guaranteed to have facial paralysis!  This coming from a pretty conservative physician, at that.

RUN!  RUN!  RUN!

[Sanddollar]

One clarification on the last post - initally facial paralysis would have been expected with a facial neuroma, but there was hope for recovery of tone and some movement later.  No guarantee of complete permanent paralysis. 

So glad to hear your friend is getting access to medical care with which they are more comfortable.  That makes all the difference.  My thoughts and prayers are with you both.

Sanddollar

[Skafloc]

I just wanted to add my voice to the votes for House Ear clinic. If the insurance can be worked out go there ... it is THE place to have any AN surgery.... I had my surgery to remove a 3cm AN on June 16th of this year. (Slattery and Schwarts were my doctors).... I came through it with NO facial nerve damage (6 hours of surgery) and was out of ICU in 1.5 days and out of the hospital completely in 4 days.... The House Ear Clinic is across 3rd street from St. Vincent medical center in LA... the hospital has a guest center adjacent to it (Seton Guest Center) that has hotel like accomodations for $50/day... they were wonderful and made this huge mess really easy to deal with.

Skafloc