ANA Discussion Forum
General Category => AN Issues => Topic started by: travel2ski on March 07, 2007, 10:48:59 pm
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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.
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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.
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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
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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
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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
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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....
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I was just diagnosed with a 1.5 cm neuroma on my right side. I have good hearing, and the diagnosis was necessitated by some facial paralysis (not noticeable to most). I am 53, in excellent shape and health, and am going to begin to get opinions next week (I also live in NYC). I have been told that Dr. Costantino and his team at Roosevelt are excellent (Cranial Base Surgery Center) but if anyone knows anything else, please let me know. Obviously, I am nervous, scared, anxious, etc, but from my research it looks promising. Thanks again
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Evan,
I spoke to Dr. Sen who is Dr. Constantino's associate when I was deciding what to do for my recurrance. You'll probably have to meet him because he is the one who operates on ANs and he has done hundreds of them. I was extremely impressed! Dr. Sen was extremely knowledgeable, straightforward and there was no sales pitch, just information. I have decided on the endoscopic approach which Dr. Sen unfortunately does not do on ANs but does on other tumors but if I had to stay in NY and could not leave, I would do it with Dr. Sen. I visited a few teams in NY and liked Dr. Sen the most. For my upcoming surgery unfortunately I will have to go to LA but I wish I could stay local.
Eve
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Eve:
Why did you ultimately choose to go to the House Clinic. I know that they are excellent. Did you go to see Dr. Roland at NYU. Finally, I did not realize that some physicians can do the surgery endoscopically. Sorry for all of the questions, but thanks for your prior response.
Evan.
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Evan,
I am NOT going to House and Ear Clinic because they don't do endoscopic removal. It's an excellent institution and in fact if I wanted a traditional approach (they recommended translab), I would have gone there because I have a recurrance and they have the most experience wiith it. I have decided to take my chances with endoscopic removal at SBI (look for thread Skull Base possibilities in Microsurgical Options for what they do).
I visited Dr. Roland and Dr. Golfinos at NYU (they work together as a team) and liked them both very much; they are personable, easy to talk and you can even e-mail Dr. Roland and he answers your questions. However, they both seemed somewhat intimidated by my tumor commenting that "it's not small" as well as some other things. They suggested translab just like HEI but I got a feeling that my chances would be better at HEI as they have more experience with recurrences which is what I have. HEI also produced references which I later realized was totally unnecessary because there are so many people on this forum who had surgeries there, HEI's record speaks for itself. NYU team did not produce any even though I asked them three times during the course of 2 months which is the span of time between seeing each of them. NYU quoted the same numbers as HEI in terms of facial nerve preservation , regrowth, etc. but where is the proof? Do those numbers reflect their experience?
Then I visited Dr. Sen. He impressed me very much. He had a different position: my tumor is not big (notice the difference), with the tumors this size, he has not seen a paralyzed facial nerve or swallowing difficulties in 5 years. There was no sales pitch of any kind, just pure information. I did not ask him for references directly but I read about his work and there were patients with meningioma on their support group who travelled from all over the US to have the surgery done and were very pleased. Meningioma is also a benign tumor but more difficult to peel off the nerves because it has a broader base. Dr. Sen has also done a lot of NF2 tumors which are more difficult, larger and recur faster. So, I was confident that he was extremely competent exactly in the area that I needed.
Finally, I learned about endoscopic removal and had 2 consults there and chose the surgeon. So, that is my story.
Evan, research, research and research. Your situation is completely different than mine. You have a small tumor, not a recurrence, so your surgery should be less risk overall. Visit as many doctors as you can. Dr. Roland is a good doctor to talk to, as well as DR. Sen. Another must for you is to get an opinion from HEI and they do it for free. Two endoscopic surgeons (Dr. Jho and Dr. Field) will do it also. Radiation can be an option for you as well. I spoke to Dr. Isaacson at Columbia Presbyterian who does Gamma but decided against radiation alltogether. Leave no stone unturned and only then you will allow yourself the best opportunity. I am surprised that you already have some paralysis with the tumor that is still small. Some doctors feel that if a small tumor casuses facial issue, it is possibly a facial neuroma, not acoustic. So, be sure to ask.
Best wishes, keep us posted and if there is anything I can help you with, e-mail me.
Eve