Author Topic: Any suggestions if we should travel to House Ear Instititue for surgery?  (Read 4838 times)

penpencil

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Hi,

My wife was diagnosed with AN on Jan 25, 2011 while she was pregnant at 36 weeks. The tumor was 2.8cm*2.9cm*3.0cm. At that time, our baby was also a lot smaller than average as my wife had only gained around 5 pounds during her pregnancy.

Being in New Jersey, We went to see Dr. Sisti @ Columbia University on Jan 27. He was very helpful and suggested we came back visit him after the baby was born. He also talked to our OB regarding my wife's condition, and the OB then decided to schedule a C-section for us on Feb 2 (37 weeks + 3 days). My wife had general anesthesia during the C-section. As expected, baby was born less than 5 lbs. Fortunately, both mom and baby were doing OK.

After a few day's recovery from C-section, my wife had another MRI, but with contrast this time. The results were almost the same. We brought the CD to Dr. Sisti, and scheduled a surgery with him on the upcoming Mar 16.

Yesterday, we found out this AN forum online, which we thought was VERY VERY helpful. Many people was talking about the House ear institute (HEI) in LA, which reads to us is great for treating large tumor which my wife has. For her case, my wife is very concerned about the various post-op symptoms, especially headaches, facial paralysis, and possible tumor re-growth, We were not aware of HEI before, and plan to call the institute tomorrow for consultation/opinion.

We were quite impressed by Dr. Sisti during the 2 office visits. But I would also like to know whether it is better we travel to HEI for surgery to minimize the various post-op symptoms? For those who traveled there for surgery, I am wondering how to deal with the post-op follow-up visits? (thanks to my parents-in-laws, they can help taking care of the baby in the upcoming few months).

The other question is about surgery duration. Dr. Sisti said it would be around 6 ~ 8 hours. Reading the various posts, I see it took 10+ hours or even 20+ hours for my wife's tumor size. Any comments on this?

Many thanks,
Penpencil

leapyrtwins

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Re: Any suggestions if we should travel to House Ear Instititue for surgery?
« Reply #1 on: February 27, 2011, 07:40:27 pm »

But I would also like to know whether it is better we travel to HEI for surgery to minimize the various post-op symptoms?

Going "to HEI for surgery won't minimize the various post-op symptoms" anymore than going any place else will.  HEI has a wonderful reputation, but there are many, many other places to go for AN surgery with equally good reputations.  And patients who don't go to HEI don't have any worse "outcomes" than those who do - I am a prime example of this.

Doctor's aren't Gods and they can't guarantee anything.  The most important thing is that your wife has a doctor who is very experienced with treating ANs.  It's also important that she has a doctor or doctors she is comfortable with.  If she finds that at HEI that's great, but don't prematurely discount doctors closer to home.

Dr. Sisti has a stellar reputation, as do several other docs in the NYC area - Roland & Golfinos, and Selesnick come to mind.

As far as surgery time goes, it varies.  My AN was medium/large like your wife's (almost 3 cms) and my surgery took 7 1/2 hours.

Congratulations on the new arrival.  Boy or girl?

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

penpencil

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Re: Any suggestions if we should travel to House Ear Instititue for surgery?
« Reply #2 on: February 27, 2011, 09:09:04 pm »
Thank you, leapyrtwins.

When I talked to Dr. Sisti, he mentioned that he will be the single surgeon during the surgery. Reading from the posts here, I noticed there are normally at least another ENT surgeon there. How was your experience on this? I understand that Dr. Sisti is VERY VERY experienced with this type of surgery, but I thought it would also be helpful to have an ENT surgeon there.

Good to know that your surgery didn't take that long. I was quite shocked when reading that some surgery took even longer than 10 hours.

I am new to this forum, and I will try to go through the previous posts soon to learn more on this. As I don't know which forum is more appropriate, I had also posted my questions in the 'Physicians' forum. Please ignore the post if you happen to read it there.

We had a baby girl, and she was our first baby. She is growing quick, more than 6 lbs now. Going through so many things this year, we are VERY happy that she is doing great now.

Penpencil



jaylogs

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Hello penpenci...I am a HEI alumni and I can't say enough good things about them!  That being said, Jan is right in that there are a LOT of great places one can go.  I never have heard of the single surgeon approach either but it sounds like your doctor know her stuff.  So it all comes to what feels right for you....once it does and you commit to that, it will indeed by THE right choice, never second guess yourself unless you have some reservations.  Let us know how it goes, just know we are behind you whatever choice you do make! Take care!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Mei Mei

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I know that Dr. Selesnick does the surgery with a neurosurgeon.   There are excellent choices in NY, but I can't say enough about HEI.   I didn't go there for the recommended Middle Fossa and had the retrosigmoid instead.   Dr. Friedman out there still answers my questions when I email him within a few hours and I was never even his patient.    Incredible!

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

sterry

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The advice I was given, was find the doctors that do the most, as they will get you the best outcome.  At HEI they also have a team approach, with many surgeons for different specialities during the process.  My surgery was 8.5 hours for a 3.7 cm tumor.  I am very glad there was more than one doc in the OR.
Left AN 3.7 cm. 10-23-09 
HEI Dr. Friedman, Dr. Schwartz
Translab
Doing well

Jim Scott

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Hi, Penpencil ~

Although I respect HEI and have recommended them at times (and still do), I have to concur with Jan (leapyrtwins) that there are many fine doctors operating on acoustic neuroma patients in various parts of the country.  Upon my AN diagnosis, I considered House Ear Institute but looked closer to home, first, and considered HEI as a fallback option if I couldn't find a satisfactory surgeon, locally.  I was fortunate to find a 'local', highly respected, very experienced neurosurgeon that operated on my AN and participated in my planned follow-up radiation 'mapping'.  I had a successful surgery (no complications) and the radiation was both uneventful and highly effective.  This skilled, compassionate neurosurgeon practices in a small city (New Haven, Connecticut) and although he is well known and respected there (he occasionally teaches neurosurgery at Yale Medical Center) he is not nationally renown, as are the well-publicized doctors at HEI and other big-city institutions.  However, I consider myself both fortunate and blessed to have this fine neurosurgeon as my doctor.  He is not an anomaly.  Choosing a doctor for the AN surgery is crucial and difficult but even with HEI's fame (and record of success) I would not rule out choosing a doctor/institution closer to home.  Minimizing post-op symptoms is obviously desirable for every AN surgical patient but no doctor can guarantee it, no matter where he/she practices.  If only HEI could assure good surgical outcomes and minimal post-op issues for AN patients, no one would ever consider going anywhere else for AN removal surgery.   That clearly is not the case, as many of our posters will attest.  However, there is certainly nothing wrong with considering House as your 'fallback' choice if you aren't fully confident with Dr. Sisti - or any other 'local' doctor.  That will be up to you and your wife.

As for surgery duration, that is totally dependent on what the surgeon finds when the tumor is exposed.  The MRI can only tell them so much.   My AN was large (almost 5 cm) and my surgery lasted just under 9 hours.  Yes, some AN removal surgeries can last much longer but 6 - 8 hours is the 'norm', understanding that things can change rapidly during the operation, as it can with most complicated surgery.

We can understand and empathize with your wife's concerns (we all had them at one time) but the fact is that there is no guarantee or panacea for AN removal surgery.  No matter what the institution and/or doctor,  AN surgery is complicated and carries some risks that cannot be avoided or denied.   We all try to minimize those risks by choosing the 'best' doctor but in the final analysis, sometimes, along with a surgeon experienced  in AN removals, hope and prayer are your best friends.  Well, those and the folks that post on these ANA discussion forums.  :) 

Jim   
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

OTO

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I think one of the reasons that House Clinic uses more than one surgeon during the operation is that they schedule at least two or three AN surgeries per day.

They have two neurosurgeons on staff at the Clinic, and the individual neuro-otologists  assigned to you also participate.   I'm not sure who does the different parts of the surgery or if they take turns.   I'm guessing that the neurosurgeon might move between different patients during the day???    They sometimes have another doctor observing or assisting, usually a new surgeon on a fellowship.   

leapyrtwins

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I think one of the reasons that House Clinic uses more than one surgeon during the operation is that they schedule at least two or three AN surgeries per day.

Using more than one surgeon during AN surgery isn't unique to HEI.

The majority of AN surgeries are done with 2 docs - for example, a neurotologist and a neurosurgeon.  The team approach is used because removing an AN is a tedious process - they don't just cut the tumor out, they peel it away layer by layer - and it's "close" work done through a microscope.  There are also other "things" to worry about like hearing nerves, facial nerves, etc.  AN surgeries are typically long surgeries, so with two docs they each get to rely on the other for a new "set of eyes" periodically - in other words, they take turns doing the close, tedious work.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways