Author Topic: Trying to Decide  (Read 7402 times)

travel2ski

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Trying to Decide
« on: March 07, 2007, 10:48:59 pm »
Have 1.5mm AN on RHS.  Pretty good balance and hearing.  I am from NY and am trying to decide if I should have Dr. Roland/Galfinos from NYU or Dr. Brackmann at House do the surgery.  Any insight would be great.  Hoping for the triple crown...remove tumour, no facial paralysis, and preserve my hearing.
1.7 cm removed at HEI by Dr. Brackmann and Dr. Schwartz on 4/12/07.  CSF leakage, lost hearing.  Getting better every day.

Sue

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Re: Trying to Decide
« Reply #1 on: March 08, 2007, 02:36:20 am »
Hi,

Just wanted to say hello and wish you the best of luck with your decision making. Can't really help you there, but I know lots of people on here have had their surgeries at House and have good things to say. I'm sure that can be said of the other doctor you mentioned also.

I'm a GK patient...so just wanted to say that is probably an option for you also.  So maybe you need to talk to a third doctor....just to confuse the issue even more. ;D

Good luck with your eventual treatment and recovery.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


http://suecollins-blog.blogspot.com/2010/02/hello.html


The only good tumor be a dead tumor. Which it's becoming. Necrosis!
Poet Lorry-ate of Goode

Lorenzo

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Re: Trying to Decide
« Reply #2 on: March 08, 2007, 03:17:23 am »
HI,

Like Sue, I can't really help. But, I wondered too if you did consider the radiosurgery option, be it Gk, CK or other? With an AN that size and ok balance and hearing it would seem like a good option... But maybe you already ahve made your mind up.

Hope somebody will answer your question.

Good luck,  :)

Lorenzo

Derek

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Re: Trying to Decide
« Reply #3 on: March 08, 2007, 05:01:43 am »
Hi there...

Just adding to what Sue and Lorenzo mentioned re you being a possible candidate for stereotactic radiosurgery. I have a 2 cm AN diagnosed 5 years ago and my only symptoms are SSD on affected right side and very minor tinnitus. I am now 63 and intend to remain in 'wait and watch' mode for as long as I can pending my ultimate decision to (if and when necessary) go down the GK route.

I presume that you have considered other treatment options and I just wondered what decision making process guided you to your apparent ultimate personal choice of microsurgery re the greater risks of permanent side effects and no guarantee that the AN will not regrow?

Regards

Derek

Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Lorenzo

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Re: Trying to Decide
« Reply #4 on: March 08, 2007, 05:06:36 am »
Just to add to what Derek said (and as a personal view), I don't think there's any guarantee that the AN won't regrow with radiosurgery either. That risk (however small) is always there, regardless of the treatment mehtod.
Again, good luck with your decision.
Lorenzo
« Last Edit: March 08, 2007, 05:08:45 am by Lorenzo »

Derek

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Re: Trying to Decide
« Reply #5 on: March 08, 2007, 05:27:24 am »
Yea...Lorenzo is absolutely correct re no guarantee eirther of no regrowth or side-effects with radiosurgery and I should have added that caviat albeit the post-treatment side effects are acknowledged to be substantially less with radiosurgery.

Statistically the 98% success rate attributed to GK treatment has had the major impact upon my decision making process.

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

1wareagle

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Re: Trying to Decide
« Reply #6 on: March 08, 2007, 06:10:16 am »
Travel2ski,

I can't help you with the Dr.'s in NY but I can with Dr. Brackmann. He is top notch in my book. Dr. Brackmann at the House Ear Inst. will look at your film for free. Just mail him a copy of your MRI and he will call you back the next day after he gets it. While I was there in Jan. 07 he would see a new patient during the morning and do surgery that evening on the patient from yesterday. His nurse told me he does this everyday. If nothing else use him for a 2nd opinion.

Good Luck
Ellis
Ellis- Age 50- Mississippi
3.2 cm AN Translab w/ BAHA Surgery
@ House Ear Clinic - LA - 01/04/07    Dr. Brackmann, Dr. Hilselberger, Dr. Stefan
Platinum weight in right eye-Dr. Roberts
Right side facial paralysis (slowly getting movements)

Shrnwldr

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Re: Trying to Decide
« Reply #7 on: March 08, 2007, 10:24:46 am »
I agree with Ellis.  If nothing else fax and/or mail to House and/or Dr. Brackman your films and get that second opinion.  Then you can go from there.  I know that many will tell you that out of towners usually stay at Seton Hall, which is on the hospital grounds and quite reasonable.  Good luck ~ Sharon
2cm x1cm, right side
Surgery: Trans-lab approach
Dr. Jerald V. Robinson, Dr. William Hitselberger, Dr. Michael Stefan.
Hopsital: St Vincent's Hospital, Los Angeles, CA
Date of Surgery: May 18, 2007

jtd71465

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Re: Trying to Decide
« Reply #8 on: March 08, 2007, 10:55:46 am »
As you already know...I can help.

I consulted with each (plus two others)...I went with Roland at NYU.  Please feel comfortable with the decision that you make, it makes all the difference in the world.  All people and tumors (unfortunately) are not created equal.  My tumor as we discussed was approximately the same size as yours, I too had great hearing before surgery.  My surgery was 3.5 hours long, that's not to say your won't be 10 hours it's just my experience.  My stay in SICU was great and when I was moved into a "normal" room it continued to be great.  I kept looking for the one person that had an attitude or didn't like one of my stupid questions....I never encountered them...NYU, the doctors, and the staff are top-notch (in my opinion). 

I'm back at work (writting this response from my desk).  Am I back at 100%...no, but I would say 80-90% wouldn't be that far off.  As I also mentioned don't hesitate to contact me at either of the phone numbers I sent you.  Sometimes it's much easier to talk on the phone rather then sit and type an email. 

One thing I have learned during this time....I will always have time for anyone who has questions regarding my AN journey.

Best Wishes,


Joe Dombrowski
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos

Desilu

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Re: Trying to Decide
« Reply #9 on: March 08, 2007, 03:33:19 pm »
Hi Travel2ski,

I don't know anything about the doctors in New York but I can speak from experience about Dr. Brackmann. I guess you can say I won the triple crown. It is possible. Total tumor removal, no facial paralysis and I retained 85% of my hearing. As the others have said, he will give you a free phone consultation if you send him your films.  It is well worth the postage! If I can help you in anyway just email me.  Ann from Indiana
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

Jwh

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Re: Trying to Decide
« Reply #10 on: March 08, 2007, 08:47:42 pm »
Hi,

I went to Dr. Roland's office today to discuss my AN regrowth.  I loved him he's easy to speak with and really listens.  You can send him emails and he respondes within hours.  Just this week, he performed 5 AN surgeries. He 's very experienced in this field.  Once I decide to move forward with the surgery, I will probably go with Dr. Roland.
5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

pearchica

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Re: Trying to Decide
« Reply #11 on: March 08, 2007, 09:47:33 pm »
Hey Travel2ski: I had three surgical consultations(#1 said debulk and translab followed by radiation,#2 said translab only,#3 said retrosigmoid) and then a fourth who was a surgeon who also trained in radio surgery.  I was really pleased with the cyber knife experience I had at Stanford. NON invasive, three days of 40 minutes in an open air room with a small laser zapping the bugger.  I was shopping after the first treatment, shopping after the second treatment and driving back to my home after the third treatment.  Being diagnosed with the AN was hard, getting it treated was the easiest thing I have ever done.  Those of us who have had cyber knife treatment are really advocates because we are able to get on with our lifes right away.  And with a 98% chance versus the complications associated with surgery- it seemed like a winner for me. My experience is that the industry is very biased to surgery- you really have to seek out the radiation options and go outside the nornal ENT circle.  My hearing is still preserved, my throbbing on my left jaw has decreased.  I was lucky in that I had no balance issue. #4 said he would go with #3's approach if I had had balance issues... but I lucked out. So anyways, that's my two cents.  However, ultimately it's your desicion.  Unfortunately, I am on the west coast so can't weigh in on facilities. However, I think an "academic" institution is the way to go. I was impressed with the level of care I got at Stanford- great support staff especially as these are the people you really deal with.  Good luck- keep us updated on your progess.  Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

pearchica

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Re: Trying to Decide
« Reply #12 on: March 09, 2007, 03:34:34 pm »
Another member pointed out to me a grammatical error that I have made:  I need to say potential complications associated with sugery, not actual complications associated with surgery.  Sorry to have confused or offended other members. That was not my intention.  Thanks, Annie
Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Derek

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Re: Trying to Decide
« Reply #13 on: March 09, 2007, 04:13:05 pm »
Hi Annie...

You could not remotely offend anyone...your posts are always empathetic, informative and insipirational to those seeking reassurance and guidance on their AN 'journey'.

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

jtd71465

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Re: Trying to Decide
« Reply #14 on: March 09, 2007, 04:36:35 pm »
Point of order...I was never offended...we just need to support individuals that may have already made the decision to go with micro-surgery.

Let's try and get this post back on track....
Right side AN removed 1/10/07 @ NYU Medical Center
Dr's Roland and Golfinos