Author Topic: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?  (Read 10925 times)

jazzfunkanne

  • Sr. Member
  • ****
  • Posts: 457
Yes bobbi you will  be offered the cross aid as well, thats what i have, my an was over 4.5cms, i am having a baha trial next week
« Last Edit: August 11, 2008, 09:53:28 am by jazzfunkanne »
over 4.5cm AN removed dec 06

28Lisa

  • Full Member
  • ***
  • Posts: 102
  • pre opt
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #16 on: September 09, 2008, 11:39:03 pm »
I live in NY too and got mines removed last year
    I don't reccommend Dr Selesnick, he didnt show up with Dr Steig for my surgery as previously agreed..

NY Presbyterian &Cornell are surgered into one.  When I was first admitted I heard great reviews of both drs. being top notch, was excited when they both agreed to perform my surgery,despite the long waiting list.  They are both very charming and easy to talk to.  It was shocking to find out months later that only Dr Steig ran the show and Dr Stelesnick wasnt involved.
A.N. 4+cm, 9/11/07 @ NY Presbyterian Hospital, Dr. Phillip Stieg
post opt - partial facial paralysis on left side, total hear loss on left side, speech altered, loss of taste, smell,balance, loss of sensation on right side from shoulder down, low motor skills, eye weight 11/07

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #17 on: September 10, 2008, 02:58:20 am »
Hi, Bobbi:

Sorry to hear you have had to join our little club, but welcome.

The most common surgeries for a 4cm AN are translabyrinthine and retrosigmoid. Translabyrinthine approach (entering the skull through the ear canal) removes all hearing structures and the vestibular (balance) nerve on the affected side, so it is a given that you would lose 100% of your hearing on that side should you have this surgical approach performed on your AN. Retrosigmoid approach (entering the skull behind the ear) often preserves the hearing and balance nerves anatomically but the function of those nerves often suffers with this approach in removing a large tumor. So, you would probably end up losing your hearing anyway with a retrosigmoid approach. (Dr. Brackmann, famous brain surgeon at the House Ear Clinic in L.A., told me that a retrosigmoid approach to removing my then-1.9cm AN had an "almost non-existent chance of preserving any useful hearing" on the affected side.)

Endoscopic surgery is relatively new. There are concerns in the medical community over the risk of bleeding with endoscopic surgery. That is, important blood vessels have a higher chance of being ruptured, or so the thinking goes.

As I see it, you have two good choices if hearing preservation is a primary goal of yours: 1. tumor debulking (removing most but not all of the tumor surgically, so as not to scrape and therefore damage any important nerves such as the hearing nerve but more importantly the facial nerve), followed by radiosurgery (GammaKnife, CyberKnife or FSR); and 2. foregoing surgical resection and having FSR (fractionated stereotactic radiosurgery) performed by a medical facility that will agree to treat a large/4cm tumor with radiation. The only facility I know of that will treat ANs larger than 3 cm with radiation is Staten Island Hospital (SIH).

It's a difficult choice you face, especially considering you are so young and your hearing is still good. A couple of helpful things to know: first, the risk that radiosurgery will cause malignancy/cancer are deemed to be virtually no greater than the risk for the general population. Second, as Dr. Chang (esteemed Stanford University Medical Center neurosurgeon) told me, the primary goals for tumor treatment are the following, in descending order of importance:
1. tumor control (keeping it from growing, so it doesn't kill you)
2. facial-nerve function preservation (facial paralysis is deemed to be one of the most serious impacts on quality of life)
3. preservation of balance function (vertigo, oscillopsia and/or disequilibrium also have a significant impact on one's quality of life)
4. hearing preservation
So, you can see that hearing preservation is down the list a ways. Not to diminish your rightful concern over preserving your hearing, of course. But my point is that the two options I put forth above for potential hearing preservation should be considered in context of the larger picture.

Every treatment approach carries substantial risk. It sucks that there is no silver bullet. But everyone on this forum has been here, and the vast majority of us have come out okay -- if not unscathed -- after treatment. We're here to help.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

Pembo

  • Hero Member
  • *****
  • Posts: 644
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #18 on: September 24, 2008, 07:37:35 am »
Welcome to our world. I had a 4 cm AN and had it removed in Cleveland OH. My hearing was near perfect also before surgery. I did lose my hearing but got the BAHA implant. It is not my original hearing but it helps tremendously. Good luck on your journey.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

chopper

  • Jr. Member
  • **
  • Posts: 70
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #19 on: September 25, 2008, 10:40:14 am »
Endoscopic surgery is relatively new. There are concerns in the medical community over the risk of bleeding with endoscopic surgery. That is, important blood vessels have a higher chance of being ruptured, or so the thinking goes.

When I was doctor shopping this was one of the questions I posed to the folks at the Skull Base Institute (and to those that use the traditional method).  With the advance of the tools of the trade, they are able to cut and cauterize at the same time, so this is pretty much a minor and very rare occurance.

Given your age, I would suggest you explore ALL options regarding traditional and endoscopic methods of removal.  Don't rush into anything.
3+cm AN, hit the chopping block 5 Sep 06 at the Skull Base Institute
Was 4.5cm at it's largest point, completely removed.  All motor functions normal.  Only complaint is SSD on the left side, which was expected anyway.

Chillin (literally) at 76-32N 068-45W 77M in Kalaallit Nunaat

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #20 on: September 26, 2008, 01:17:16 am »
I concur with Chopper -- explore all options. I certainly didn't mean to suggest anyone rule out endoscopic (or any other approach to) surgery. It's difficult to give a lot of information here in condensed form (to avoid writing a book with each post!) without generalizing. Hopefully I've provided a broad overview that can help serve as a starting point in one's research for the best treatment course for them personally.

Best wishes,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

msmaggie

  • Hero Member
  • *****
  • Posts: 665
  • Blessings abound!
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #21 on: September 30, 2008, 07:45:41 pm »
Doctor shopping is a VBD--very big deal!  You can get all kinds of referrals from the site.  I truly think everybody knows everybody.  I haven't chosen a dr. yet, but I have to tell you that you will get more than your money's worth by getting a consultation w/House.  A Dr. Wilkinson was the one who contacted me, and I have talked to him at least four times.  He called me last Sat. night just to check on how I was doing, and said that when he was at a conference recently he was dr. shopping for a dr. in Dallas for me because he knows I live in Houston.  I think that is above and beyond the call of duty for a free phone consult!

Maggie
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

JerseyGirl2

  • Hero Member
  • *****
  • Posts: 513
Re: 24 yr old with 4cm AN, hearing is still good, where should I go for surgery?
« Reply #22 on: September 30, 2008, 08:41:34 pm »
Dr. Wilkinson is, I believe, the newest member of the House surgery staff. When I had my surgery there this past January he was completing his Clinical Fellowship, and my surgical consultant said that he was going to join the staff shortly thereafter. He assisted with my surgery and was really a caring, compassionate individual. I'm not surprised that he's been keeping in touch with Maggie and checking on her progress.

JerseyGirl2
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Hi Bobbi -
Wow -- am I ever late in coming to this thread.  Welcome to our forum -- I'm sorry that you have an AN, especially such  a large one.  In reading all the posts in this thread, I see that Debbi mentioned me and my wonderful doc (thanks Debbi!)   I am now 12+ weeks post op and doing great!  Although I did lose my hearing in my AN ear, I was originally scheduled for middle fossa.  I ended up having the translab approach because of two sudden hearing drops that left me practically SSD anyway. 

 I would definitely recommend Dr. Choe if you are still shopping for a doctor.  He usually works with Dr. Joshua Bederson, chairman of Neurosurgery at Mt. Sinai.  Dr. Bederson does not accept insurance but will usually accept out-of-network coverage as payment.  Since I didn't have out-of-network coverage, he recommended a colleague, Dr. Chung Chen, a truly lovely man  and brilliiant surgeon according to Dr. Choe.  As you can see, I can't argue since I had a great outcome.

Best wishes,
Wendy

P.S.  Don't know if you noticed it under AN community, but we are trying to get some people together for lunch in NYC November 15 -- try to come if you can.  PM me for details if you are interested.

1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Bobbibl

  • New Member
  • *
  • Posts: 9
Had about as a good an outcome as could be expected.  No facial or balance issues post surgery.  Apparently, it had been growing for so long that my body had already compensated with the other side.  Was actually walking all over the hospital by day 3.  Did end up with SSD though so trying to get used to that.  Also do have a continuous "clogged" feeling in the AN ear.  Doctors tell me that should dissipate over the next couple months.
« Last Edit: October 23, 2008, 10:28:33 pm by Bobbibl »
4cm AN removed 9/23/08 at Columbia-Presbryterian in NYC by Dr. Michael Sisti with Retrosig approach.  No facial/muscle/balance issues just SSD on left side.

wendysig

  • Hero Member
  • *****
  • Posts: 1937
Hi Bobbi,
Congratulations on a wonderful surgical outcome!  My doc also assured me that the feeling of fullness in my hear would dissapate in a couple of months when the internal swelling went down and I am starting to feel that (I'm 13 weeks post-op today).  Wishing you continued good healing and wellness.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Hi, Bobbi  :)

Thanks for the update.  It sounds like you are going very well - wonderful outcome for such a large AN  ;D

If you find that you don't adjust well to being SSD, consider the BAHA, it works wonders.

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

MAlegant

  • Hero Member
  • *****
  • Posts: 1295
  • 50th birthday party pic
Hey Bobbi!
Congratulations on coming through so well.  I'm sorry about your hearing but I know you'll find a way to deal with it.  So happy you are well! 
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Bobbibl

  • New Member
  • *
  • Posts: 9
Starting to run again (with no balance issues luckily) which is good news to me but am getting extremely annoyed with the SSD.  I don't think about it all the time but others that have SSD keep telling me it'll get better.  Not close to what it was but better then it is now.  I'm only about a month post-op but will the hearing get any better then it is now when I'm in noisy places or will I just get used to it?  It seems like besides when I'm home I always seem to be in noisy places (work, social etc).
4cm AN removed 9/23/08 at Columbia-Presbryterian in NYC by Dr. Michael Sisti with Retrosig approach.  No facial/muscle/balance issues just SSD on left side.

Kate B

  • Hero Member
  • *****
  • Posts: 743
    • AN World
Bobbibl,

That is great news that you can run without balance issues.

Some days are more frustrating than others regarding hearing.  I know I have some hearing on my AN side and noisy places frustrate me at times.  It is like Charlie Brown's teacher...WAH. Wah.Wah...

Specifically, I cannot speak to SSD and your question, but I know others will.

All the best,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

 


anything