Can't get House Ear Clinic to call us. UPDATE what to do.

[Mark]

Robynabc,

I think Phyl's earlier post was spot on in that there are other very experienced and successful AN surgeons around the country other than just those at House. I'm more familiar with the Northern CA area and probably the two best here are Jackler and Roberson and I would certainly put either of them on par with any of the docs at HEI. Because they specialize in AN's I do believe that HEI does have better results more consistently than many places, but they also clearly have their share of bad results. Over the years I have read posts from people who have had simply excellent results as well as those where deficits have occurred as well.  The standard for measuring facial nerve function is called the House-Brackman scale and I think it's fairly safe to assume it's development was based on their overall experience over the years. It would also be my perspective that the "pressure" you referred to reflects the fact that a) they are very good and have a lot of confidence in their abilities and b) their sole "business" is AN's.

So, I think the points you raise are very fair and in the end you need to use the surgeon(s) you feel most comfortable with in treating your son. I certainly feel that your son would get great care at HEI, but there are certainly a number of world class surgeons with significant AN experience at leading medical centers around the country who would do an equally good job.

Just my 2 cents

Mark

[chelsmom]

Hi Robynabc,

I know this is incredibly stressful.  The scary part is that your child, like mine, count on you to make this decision for them.  When we were faced with this situation we were sent to a very quilified pediatric neurosurgeon at Loma Linda University Hospital.  For some reason I just felt unsure with Loma Linda.  I don't know why.  They have a fabulous reputation, just a gut feeling.  Within 18 hours I started calling all my clients that are doctors and asked their opinions.  Without fail they all said UCLA even over Cedars and House.   Chelsea's tumor was huge and we were given all the pros and cons of the surgery.   We were 100% sure we were at the right place.   At UCLA they work in a group, each doctor is very specialized in their area of neurosurgery.  Her main neurosurgeon is Dr. Donald P. Becker,  shunt neurosurgeon is Dr. Bergsneider,  radiation-neurosurgeon- Dr. DeSalles, head and neck surgeons-Dr. Canalis and Dr. Sercarz, and radiation oncologist-Dr. Selch.    With what we were facing and all the potential complications that could and did happen we are totally thrilled with her out come.  She has only a half dollar size numb spot on her cheek and deaf in the right ear.  She is still on this long road called recovery but improves daily.  When it comes down to it,  I think it is a matter of who you feel most comfortable with.       Michelle

[IAHeel]

Like any mortals, House has results where there are complications. They will quote you those numbers based on their own research. In their hands, these risks are very small, but they are there. They do scholarly research on their patients and follow them long term from that point of view. If you call them long after surgery, they call right back.

[robynabc]

HI,

I want to thank everyone for thier great information.  I talked with both doctors here at University of Colorado again and we have decided to go with them.  Because there is brainstem involvment I was very interested in a really good neurosurgeon and I really feel comfortable with Dr Lillehei.  He does many many tumors and large ones especially.  I am feeling better knowing that the decision part is over with.  That was agonizing.  Now we can focus on the surgery and recovery.  Thanks again for all the info.   

[meredith]

HI,

I sent my 18 year old son's MRI's to House last Monday.  They have not called and everytime I call them they hang up on me or I mean we get disconnected.  I need to talk to them so I can make a desicion. When I talked to someone last week they said that Brackmann would call us but he is on vacation.  So I told the nurse we could wait until today but I called again and they seem confused about me even sending the MRI's.  Has anyone else had this problem?  Thanks in advance.   

[Pembo]

robynabc - It is important that you feel comfortable with the doctors. Even though I sometimes wonder what my outcome would have been had I gone to House, it wasn't really an option living in Ohio. I couldn't even imagine all the logistics of travel and such...working things out for a hospital only 45 mins from home was hard enough.

I had a 4 cm AN with lots of brainstem involvement, I had near perfect hearing. The drs did retrosigmoid and were able to remove it all. I did lose my hearing but the tumor was very sticky and stuck to the hearing nerve.

Good luck to you and your son and when is the surgery date?

[Rads]

Hi,

I am surprised no one has mentioned barrow neurological institue in Phoenix, AZ.  I hope to go there for a neuroradiology fellowship and was amazed with this hospital and its reputation.  They have an acoustic neuroma center.  Dr. Spetzler is one of the top neurorsurgeons in the world and a team of 26 neurosurgeons of this caliber are hard to find anywhere.  I do not want to confuse you with more choices and as someone has stated earlier you have to try to breath, relax, and not digest to many facts and figures with the intent of placing it all on your shoulders.  It is necessary and important to be involved, but once you are dealing with the best, you have to work with them in understanding the risks and benefits.  They want the best outcome also and most neurosurgeons by nature despise failure.  The Barrow neurological institute is amazing and they have acheived their worldwide reputation by the great presurgical planning and technical expertise of their surgeons and supporting staff.  Definitely look into this place and Dr. Spetzler; however, if you are commited to the doctors you spoke about above then work with them with confidence.  I wish your son the best of health! 

[Patti2007]

The first opinion I received by a local (Providence, RI) doctor I was referred to told me it was a very small growth and would be simple to remove with translab.  He told me to talk to his receptionist to schedule surgery right away and take care of this.  No options were discussed with me and my hubby left there thinking it was a very easy removal.  After I started researching on my own, I got two more opinions from Boston (surgery) and Gamma Knife options.  My point is, if I had listen to the first and did it right away, would I have regretted it? Absolutely.  Do your research, if you still feel uncomfortable, do more research until you feel comfortable with your doctor and your decision.

Patti

[neal r. lyons]

puffy cheeks-thanks for your input!

I still don't have a surgery date as yet but am definitely going to the House Ear Clinic     Neal