ANA Discussion Forum
General Category => AN Issues => Topic started by: dlbenz on March 30, 2008, 04:34:01 pm
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First, thanks to all of you who replied to my "Completely Freaked" post last week. I've found this message board to be an unbelievable source of information and motivation. While I'm still pretty bummed about the situation, I'm no longer "freaked." I've moved into the acceptance stage and am looking forward to getting my situation resolved.
I am still in the process of weighing my GK/CK/Surgery options but have to say I am leaning towards surgery. I've gotten mixed replies from pretty much everyone I've talked to, and while my AN is fairly small (12x9x7mm) I want it out. At 38 years old the thought of worrying about my yearly MRI results for another 40+ (hopefully) years, doesn't sound so good. And it seems as if many with radiation treatment have also needed surgery as well. I'm thinking I'd rather have surgery at 38 than 50 something.
Again, I'm still in the consultation phase and figure I need to listen to all sides objectively so this is far from a final decision. In any case, I've heard from multiple sources (including my brother in-law who is a surgeon in upstate NY) that the House Clinic in LA is the best place to get the surgery. Does anyone know anything about this clinic? If you've been treated there what was your experience? I welcome all responses but if anyone out there underwent middle fossa or retrosigmoid approach (as I'm also leaning heavily towards surgery as preservation of my still nearly perfect AN ear hearing is a huge priority) I'd really appreciate hearing from you.
Also, what doctor(s) did you have perform your procedures? What was your experience with your doctor?
And if anyone has any other recommendations other than the House Clinic I'd love to hear about those as well.
Thanks in advance for your replies. I look forward to your responses.
Dave Benz
12x9x7mm AN
Diagnosed 3/17/08
Treatment: TBA
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Dave -
I can totally relate to your "want it out" comment. Although I was 45 at the time of my surgery and there were many factors that made me choose retrosigmoid, wanting the AN removed was definitely a factor.
There is a lot of information about HEI (House) on this forum; if you search on "House" you will be able to find numerous posts.
Lots of other good options exist also. I live in the Chicago area and had my surgery done by one of the doctors at The Ear Institute of Chicago. I am extremely happy with my results and highly recommend them. Recently I've read some very positive posts on this forum about The Michigan Ear Institute and there have also been a number of members who have had or will be having surgery in Ohio, NY, and PA.
The important thing is to find a doctor or doctors who have lots of experience in treating ANs - and more specifically, experience in the treatment option you decide to choose.
I forget what state you live in, but if you put that in this post, perhaps someone can recommend a group close to where you are.
Jan
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I live in Washington, DC but have family in the LA area so traveling there is not an issue.
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HI,
There are a ton of people on this board that have had alot of good to say about HOUSE. We did not pick House and there are more than one reason why. I think they are a good clinic but in my personal opinion, I like the option of a Univerisity setting better. But if you do not have a good doctor near you and you have to travel, I would say house is a good option. They have housing there and are a good clinic. If you want our reasons for not selecting them feel free to PM me. Good luck with your decision.
Robyn
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Hey Dave
I had my surgery through House. I highly recommend the House/St Vincents combination. There are two issues you need to be aware of though in dealing with them. You have to stay on top of the admin staff at House. There have been several dropped balls (nothing life threatening) that I needed to follow-up on. And language can be a bit of a barrier at St Vincents. If I had to do it again, I would go the same route.
David
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i have told my sweet hubby that if we have to ever do this again, we'd be going to House...besides we could meet David & he's famous, you know??
k
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My AN is similar in size to yours and I was just recently diagnosed as well...I sent my MRI to the House Clinic and Dr. House called me the other night...I was actually amazed, even though many of on this forum had informed us that they do consultations over the phone. My husband is ready to book our tickets to California, but I'm avoiding making any decision. But, it is good to know that so many people believe that House is a great place to go and if I choose to go the surgical route, that is probably where I will go. California weather sounds really good to me right now!
Good luck w/ your quest for the right answer for YOU,
Cindy
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Dave:
I'm pleased to learn that this board has been a help to you. That's our goal. :)
In response to your query regarding specific doctors and hospitals, I'll offer my experience.
My neurosurgeon was Dr. Issac Goodrich of the CT Neurosurgery group, located in New Haven, CT.
http://www.ct-neurosurg.com/ (http://www.ct-neurosurg.com/)
My surgery and subsequent FSR were performed at the Hospital of Saint Raphael in New Haven, CT.
http://www.srhs.org/ (http://www.srhs.org/)
As my signature shows, I had a 4.5 AN (pressing on my brainstem). Dr. Goodrich performed retrosigmoid microsurgery to debulk the tumor then worked with a radiation oncologist, Dr. Johnathan Haas (now practicing on Long Island) to map my FSR treatments (26 in all).
I'm pleased to report that both the surgery and radiation were successful (see my signature). I emerged from both procedures basically symptom-free and with no real complications. Today, I'm doing fine. Pretty much back to normal and feeling great. :)
I don't know if any of this is useful to you, Dave, but I offer it for whatever it's worth.
The surgery/radiation approach is becoming more popular in the treatment of acoustic neuroma patients. It spares the facial nerves (my surgeon employed nerve monitoring during the surgery) and yet addresses the remaining AN. This uses both procedures (surgery, radiation) to destroy the AN without destroying the patient's quality of life, as my neurosurgeon put it. Based on my experience, I have to recommend it...and Dr. Goodrich, who may not be famous like the House surgeons but who knows acoustic neuromas (30 years experience) and did a tremendously good job for me. :)
Jim
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Hi David,
I was directed by a neurosurgeon who is a friend to the House Ear Clinic as the premier center for surgery -- I had a consultation with Dr. William Slattery there and was very impressed. I ultimately opted for CK so I don't have any direct experiences to share but based on what I heard during my research, likely would have gone to House for surgery. (I live in LA, which was another key factor.)
In any event, feel free to contact me if you want to talk in more detail about experience with Cyberknife. Glad to do so.
Best of luck,
Francesco
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dlbenz
I had my middle fossa surgery about 11 months ago at House. Do a google search and find the House Clinic Website. You can send them your MRI film or CD-rom and they will call you for free. The website says they will respond within 24 hours, but in actually it can take a few days. I don't know how they assign the doctors to respond. They have I think 6 neuro-otologists who consult. They have one neurosurgeon on staff, and also are affliated with another one. My local ENT referred me to Dr. Slattery, so when I sent my MRI film, I addressed it to him. All in all I think the House Clinic and St. Vincent Hospital were fine. The clinic is very busy, and when you call, you may have to leave a message and wait for the doctor's assistant or the surgical counselor to call you back, but I was very happy with their responsiveness. I knew they were busy, and when I would with a question, they always called me back in a timely manner with the answer. Some people are put-off because it can seem like an assembly line. But they get patients from all over the world coming to them for different surgeries, so they are well-renown.
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I had middle fossa surgery at House/St Vincent's in November of 2005. My doctors were Dr. Brackmann and Dr. Hitselberger. I live in Florida and spent almost 2 weeks in Los Angeles. My experience was a good one - great care and excellent results. I highly recommend them.
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I had Middle Fossa with Dr. Brackmann at HEI. I would highly recommened House/St. Vincent's too.
Kristin in Montana