Is House really that good?

[Ernie]

I was diagnosed a couple of months ago.  AN is less than 1cm.  I have done a lot of research already and I am about 85% sure that I will do the MF approach.  My biggest decision is where to have it done.

I was referred to Sacramento ENT where I saw Dr. Kevin McKennan.  He pretty much told me what I already knew from doing my research.  He recommended the MF approach.  I was fairly comfortable with his knowledge and he claimed to have performed hundreds of MF surgeries.  Sacramento is only 40 minutes from my house.

I have also sent my MRI and hearing tests to House.  I am consulting with Dr. Wilkinson.  We have played phone tag a couple of times and I hope to speak with him tomorrow.  LA is about a ten hour drive from home. 

From my research and reading the posts on this forum I know House is well regarded.  I just wonder if it is worth going to LA vs. staying more local.  I am sure there are pre-op, follow up appointments, etc.  I have 3 kids under the age of 10 and I am not sure how I would work the logistics of going to LA.  Does anybody have experience with traveling a long distance to have surgery at House?  What is the total length of time you spend in LA?

Also, I have a trip planned for the early part of November.  I am trying to decide if I should wait till after the trip to have the surgery or would I be back on my feet enough by November if I have it done in late June.  I will be doing a lot of hiking and physical exertion on my trip.

Thanks for the help

Ernie   

[leapyrtwins]

Hi, Ernie.  Welcome to the forum 

I can tell you right now, that you're going to get a lot of different opinions on this question.  You all have our loyalities - and biases; I know I do.

IMO, while House has an outstanding reputation, staying local - if you have a doctor who is experienced in treating ANs - is just as good.  I was fortunate enough to have a very qualified doctor right in my own backyard; my surgery was very successful; and I'm extremely satisifed.  Others have had the same experience with doctors in their area.  The key is to find someone who's qualified and very experienced in the treatment you have chosen (surgery vs radiation).

At the time of my diagnosis I was unaware of House, but truth be told, even if I was aware of them I wouldn't have and couldn't have traveled to Los Angeles for treatment.

You are definitely a lot closer to LA than I am, so it's more of a practical option for you than it was for me.  And lots of patients travel very long distances to go to House - some from overseas.  House might be a good possibility for you due to your locality, but if you decide against it, don't think you are "settling for less".

As far as your recovery question, if you have your surgery in June, you should be doing very well by early November.  So I wouldn't change your plans for the trip.

Best,

Jan

 

[Kate B]

The posts by those using House speak as testimony and can be found in the archives as well as recent threads.
http://anausa.org/forum/index.php?topic=18.0

http://anausa.org/forum/index.php?topic=18.msg583#msg583

BTW, House Doctors developed Middle Fossa and the instruments.

You will find persons on this forum who stayed local and those who traveled--for surgery or radiation. IMHO, I believe the doctors are the most important part in the decision making process--local or distant. 
There is short term inconveniece and long term outcome.  In my situation, I felt that the short term inconvenience was worth the try for the long term outcome. My goals were both facial nerve preservation and usable hearing preservation ( I had 100% hearing going into the surgery). Middle Fossa gave me that opportunity and the docs in Illinois had lots of experience with the other two types of surgery.  I traveled to California believing that no matter the outcome, I was giving myself the "best" opportunity by traveling.  I did maintain 80% high frequencies and 50% low frequencies (losing some hearing) and at the time 84% word discrimination.  (would venture to say that I have lost some word discrim over this past year-almost 8 years later.)

All the best in the decision making,
Kate

[Lilan]

I don't know yet if House is "really that good," but believe me, I will be sharing my opinions either way in a month or so! 

I'm a little surprised to hear that your doctor -- almost any doctor outside the most huge AN centers -- has performed "hundreds" of middle fossas for AN type of surgery. I don't at all *not believe* it, but I would confirm it. That's a pretty large number for just one surgical approach. The top longtime specialists I spoke to in Chicago had only done maybe 100 middle fossas (plus possibly a few hundred of the other types as well, retrosigmoid and translab.) But maybe the m.f. became trendy sooner in Calif.! 

Also make sure he means HE himself has done those surgeries (not an entire practice or institution, or whatnot) and SPECIFICALLY the middle fossa approach. There's so much information (and shock) swimming around during appointments, it's easy to wonder later exactly how you specified a question or how they answered it, so nothing wrong with a followup.

You should also then ask for his percentage results from those hundreds of middle fossas and make sure the percentages compare favorably to a House type of institution.

Good luck with your info-seeking and decision-making.

[Lilan]

House handles travelers all the time, so they schedule the pre-op appointments in one long day, the day before surgery. The shortest total stay is 12 days: one pre-op day, surgery day, then they don't want you traveling for about 10 days after that. They have a low-cost guest center (Seton) for patients and their families. Once you start reading around the forum, search on House and also Seton, you'll learn a lot more about it.

Lifestyle factors certainly play into how well the travel piece works for people, and that is very individual. I live in a walkup in the city with two small dogs underfoot, so for me to be able recuperate with no stairs and no dogs (though I'll miss them terribly!) for 10 days is a blessing actually.   

[4cm in Pacific Northwest]

This is where you and your caregiver can stay after release from hospital- for a reasonable price. You will need to book in advance, as they are often full.

http://www.stvincentmedicalcenter.com/patients_visitors/Pages/SetonGuestCenter.aspx

It is very basic … but a very supportive environment to be in. Know that AN tumors are slow growing and you have time to build up your support network before surgery and to figure out who will take your kids while you are away. (Trust me this is not a simple day surgery and you will need time and head space away from the kids to recover…  but you will recover. You will also realize, as I did, how much more independent your kids can be- they WILL surprise you at how responsible they can be.) Actually being away form the kids during recovery may actually be a good thing. You will need to let go and trust others to care for you kids (as I did)

You may also want to read this post about HEI
http://anausa.org/forum/index.php?topic=1481.0

DHM

P.S. THe tap water in LA is just dreadful- take bottled water with you.

[Kate B]

DHM,

Great idea to post the link to Seton Hall.  Did you know there was an underground walkway between the two facilities? It took me almost a week to learn that:-)

Kate

[chocolatetruffle]

hello ernie
i live in the bay area and we drove down to House for the surgery - i had to arrive 2 days early as i got a day of pre-op before my surgery. i was in the hospital for 5 days and stayed at seton for another 4 days. on the 4th day, they took my stitches out and formally discharged me, and i left the next day (so total about 2 weeks).  driving back on I-5 wasn't that bad except i could feel every bump, every stone and every turn. the other option was flying and yes! flying is not a problem 

everyone's recovery is completely different, so let your body decide what you can do. hope this helps and feel free to email me if you have any questions. good luck!

[OTO]

My ENT in Hawaii told me to go House Ear Clinic.  I was able to do a consult with Dr. Slattery (from House), who visits Hawaii several times a year.  When I asked him why couldn't he do the surgery in Hawaii... he said House Clinic does over 200 AN surgeries a year.    The Hospital Staff (OR, Recovery, ICU and Ward) know the surgery and all the potential complications.   

Other posters talk about great sucesses at Barrow Institute in AZ; great satisfaction with Dr. Chang at Stanford CA for radiation and/or surgery.   Lots of people go to Duke (see the passionate thread about Dr. Fukushima)...  Lots of successes at Mass General and in NYC.   Also there are posts about Oregon State Hospital University (OSHU) and Seattle Ear...

Its all about feeling good about your surgical team, and your comfort level...