Keck Medicine of USC Acoustic Neuroma Center - California

[GattoMarte]

Would anyone care to share their experiences at the Keck Medicine of USC Acoustic Neuroma Center in California? Looks like this is the place where I will be having a family member treated for an AN. Thanks.

[Sheba]

Hi you can find many Keck AN center cases on this site by going to the "home" page of the AN discussion board first, then search on terms like Keck, USC, Friedman, Giannotta - there are quite a few people who have gone to Keck.

Focus on cases since Sept 2013 since this is when Friedman moved to Keck, teamed w/ Giannotta to build AN Center at USC.  They have been growing their volumes steadily - doing 3 cases tomorrow.  Seems like they are tracking well over 100 / year now.

I am having my surgery there tomorrow morning - will come back w/ my experience afterward.  I traveled from Texas.

Also check out facebook Acoustic Neuroma pages, they have many Keck patients there.  3 of the 4 AN groups are private but you can request access.

[GattoMarte]

Hi you can find many Keck AN center cases on this site by going to the "home" page of the AN discussion board first, then search on terms like Keck, USC, Friedman, Giannotta - there are quite a few people who have gone to Keck.

Focus on cases since Sept 2013 since this is when Friedman moved to Keck, teamed w/ Giannotta to build AN Center at USC.  They have been growing their volumes steadily - doing 3 cases tomorrow.  Seems like they are tracking well over 100 / year now.

Yes, I tried that and wasn't sure how far back in time to go to get to the existing staff.

I am having my surgery there tomorrow morning - will come back w/ my experience afterward.  I traveled from Texas.

Wow, Keck is that good to travel all that way? Looks like a great place for my wife's AN to be treated.

Also check out facebook Acoustic Neuroma pages, they have many Keck patients there.  3 of the 4 AN groups are private but you can request access.

Will do. Best Wishes and Thanks for all the help!!!!! 

[researcher]

Good luck, Sheba!!

[GattoMarte]

Yes, hope all is well with you Sheba!

Wife and I heard from Keck today. After their review of the MRI images they advise to W&W. We will make an appointment to go and talk with them as soon as we can, but this is not an emergency situation. They want a second MRI in January 2017.

[researcher]

Glad you can W&W. The AN is small. Meanwhile, you can continue to research what to do if the symptoms get worse and the AN grows. Hopefully, your wife will be so fortunate as to never have to deal with surgery or radiation. Take care.

[GattoMarte]

Glad you can W&W. The AN is small. Meanwhile, you can continue to research what to do if the symptoms get worse and the AN grows. Hopefully, your wife will be so fortunate as to never have to deal with surgery or radiation. Take care.

Yes, hopefully the darn thing will just stay that size forever. Looks like I have a new hobby: AN education  Thank You

[tonyc]

W&W is a very reasonable approach at this size. Hope your wife's AN maintains a stable size and never have to deal with surgery or radiation.

I can share some of my AN story. I went through W&W for my AN (size 9mm) about six years ago. For the first half a year, MRI results showed a stable size. Five years later, it grew to 13mm. I consulted with both the Keck and the House to plan a surgery. Dr. Friedman suggested the retrosigmoid approach which I worried about the headache side-effect the most. The surgery would take 3.5 hours. But he did say if my AN size were 9mm, he would suggest Middle Fossa approach. His threshold for Middle Fossa is that AN should be fully inside IAC. The limit is probably around 10mm. Beyond the limit, he would go with retrosigmoid. My AN had some extensions in CPA by then.  At the House, Dr. Brackmann and Dr. Schwartz suggested that my AN was in a very favorable size and position to go with Middle Fossa to preserve my hearing with less chance of headache side-effect. Dr. Schwartz could get the full view of the AN through different angles even though there were some extensions in CPA. The 5.5-hour surgery went through successfully. I'm glad I consulted with both the Keck and the House before I made the decision.

[GattoMarte]

W&W is a very reasonable approach at this size. Hope your wife's AN maintains a stable size and never have to deal with surgery or radiation.

I can share some of my AN story. I went through W&W for my AN (size 9mm) about six years ago. For the first half a year, MRI results showed a stable size. Five years later, it grew to 13mm. I consulted with both the Keck and the House to plan a surgery. Dr. Friedman suggested the retrosigmoid approach which I worried about the headache side-effect the most. The surgery would take 3.5 hours. But he did say if my AN size were 9mm, he would suggest Middle Fossa approach. His threshold for Middle Fossa is that AN should be fully inside IAC. The limit is probably around 10mm. Beyond the limit, he would go with retrosigmoid. My AN had some extensions in CPA by then.  At the House, Dr. Brackmann and Dr. Schwartz suggested that my AN was in a very favorable size and position to go with Middle Fossa to preserve my hearing with less chance of headache side-effect. Dr. Schwartz could get the full view of the AN through different angles even though there were some extensions in CPA. The 5.5-hour surgery went through successfully. I'm glad I consulted with both the Keck and the House before I made the decision.

Thank You for your reply. We appreciate you sharing your experience to help us and others.

[Sheba]

Hi GattoMarte -

I did a few posts since surgery but did not reply back to you here -

My retrosig surgery at Keck was great - they got 100% of the tumor.  I had very little pain (dull headache for a few days after the steroids wore off);  I did have nausea for first 5 days and needed a walker, but was fine after that.  My only disappointment is they were not able to save my hearing, but I knew the odds were 50/50 when I chose to have surgery, so I understood it could happen.  For me - I am finding that deaf in one ear is not really a problem - my other ear is so good that I thought the AN ear was maybe still working, until we did proper testing. 

I took six weeks off from work, and I was very diligent about exercising every day - walking and some cardio.  I started back to work last week, no issues except that I didn't exercise those days and I definitely felt more wobbly as a result.  I need to get a new routine of walking in the morning, before I get engrossed with my work.  Hoping to establish new routine this coming week ....  Walking a few miles makes me feel much better all day.

The extended team at Keck are really great.  The care at Keck Hospital (nurses, therapists, aides) was top notch.  The food - not so much! but I was not hungry there anyway.

My scar is smaller and less scary looking than I expected.  I had no issues with infections, incision pain, CSF leaks etc.  I did scrupulously follow instructions NOT to bend, NOT to lift;  DO wash incision daily, DO sleep propped up;  etc. 

I was scared of the stories about headaches after retrosig surgery - I am having zero headaches.  No neck pain either.

We stayed in an Air BnB apartment while in LA, that was nice- had laundry machines, kitchen, shared barbecue area, a Whole Foods at street level, etc.  And we used Uber to get around - was cheaper and easier than rental cars.  the Ubers were super clean and the drivers were all interesting to talk to.

Feel free to PM if you would like any further details;
good luck as you W&W !

Sheba

[GattoMarte]

Thank You very much Sheba!