Author Topic: I just found out. :-(  (Read 21714 times)

Mickey

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Re: I just found out. :-(
« Reply #15 on: September 10, 2008, 05:01:51 pm »
Hi Wcrimi! Welocme. I`m from NY also and have an AN which is actually .12X.06mm. I`ve heard of your DR.s but myself am using Dr. Roland and Golfinos. Iv`e been waiting and watching for over a year now with no change. With small AN`s we have this luxury. The reason why I mention this is that there is no real rush. It gives you the time you need to investigate all your options. On Oct. 25 ANA New Jersey  has a meeting which I think would be very benifical to you. They will being going over so much about AN`s. Please call them if your interested. Ill be there, they have asked me to say something on the neuromonics I`ve been doing for tinnitus. In any case youv`e started in the right place at this board. The people here are so well informed, helpful, besides being Wonderful! (ANANJ 609-683-4650) Nice to meet you! Mickey

wcrimi

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Re: I just found out. :-(
« Reply #16 on: September 10, 2008, 06:25:48 pm »
I want to thank everyone for their continued rapid contribution.  I can't respond to everyone, but every single post helped in some way.  If it makes you feel better to contribute to me (even small talk), please do because it helps me.   

I hope you don't mind another update, but I need to talk one more time tonight. I didn't sleep well last night and I have to really force myself to eat anything. I used to have some anxiety issues and I'm afraid they are resurfacing. So I took a very low dose of Xanax to try to calm myself down and hopefully get some sleep tonight.

Mickey, yours is really tiny!  How did they find it?  What is the story with Roland and Golfinos?  Which hospital?  Do they have a really good record?

Nancy, I see yours is also very small.  Good luck with that GK in October.
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

leapyrtwins

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Re: I just found out. :-(
« Reply #17 on: September 10, 2008, 10:38:44 pm »
Wayne -

Since you asked, here are the definitions of neurotologist, neurologist, and neurosurgeon.

As you can see neurotologists are ENTs. 

"ENT doctors, or otolaryngologists, are physicians who have advanced training in disorders of the ear, nose, and throat.
 
Otologists or neurotologists are physicians who in addition to their ENT requirements, continued their specialized training for an additional year or more in the diagnosis and treatment of disorders of the ear. Otolaryngologists, neurotologists and otologists are the physicians who typically treat disorders of the ear requiring medical or surgical solutions.

Otolaryngologists, neurotologists and otologists are the physicians who typically treat disorders of the ear (or hearing mechanisms) requiring medical or surgical solutions." (definition from healthyhearing.com)

A neurologist is a "specialty" physician who diagnoses and treats disorders of the nervous system. (definition from neurologychannel.com)

A neurosurgeon is  "a physician trained in surgery of the nervous system and who specializes in surgery on the brain and other parts of the nervous system. Sometimes called a 'brain surgeon.' "  (definition from MedicineNet.com)

My AN surgery involved two docs - a neurotologist and a neurosurgeon - working as a team (this is very typical).  My neurotologist performed my BAHA surgery and he also does GK (gamma knife) radiation with a radiation oncologist.

In my experience lots of ENTs don't treat ANs, but I'm sure there are some out there.  Whatever type of doctor you choose, make sure he/she is very experienced with treating ANs; this can't be stressed enough.

Hope this helps,

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

LisaP

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Re: I just found out. :-(
« Reply #18 on: September 11, 2008, 05:31:43 am »
Hi Wayne,

I'm also an "Newbie", I found out back in March of 08 that I had a tumor, I'm 45 and mine is considered small.  I'm watching and waiting for now.  I still can not make up my mind on what to do.  This forum is wonderful.  Keep asking questions and researching.  It can be very confusing, but no question is "dumb".  It is ok to feel scared and depressed.   Keep in touch.

LisaP :)
LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

cindyj

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Re: I just found out. :-(
« Reply #19 on: September 11, 2008, 05:50:30 am »
Hi Wayne and Welcome!

As you can see, you have found a wonderful place to help you w/ your AN journey.  All of us have been through that initial phase of shock, worry and confusion.  I know I had never spent so much time in front of a computer for personal use in my life.  I would get up in the middle of the night and find myself right here reading every post on this forum and I am not one to get out of bed once there :)

You will have many more questions, and people here are more than happy and willing to help.  They are also very, very knowledgeable about AN's.  I have only just made my decision a few weeks ago after finding out in Feb of this year about my AN.  You, too, will figure things out in your own time, and then fight this thing and win.

Take care and keep us posted,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

wcrimi

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Re: I just found out. :-(
« Reply #20 on: September 11, 2008, 07:18:47 am »
Jan,

Thanks.

Dr. Kenneth Etra is the person that found my AN. He is the otolaryngologist that I was sent to by my general practitioner.  I refer to him as my ENT for short.

He has referred me to Dr. Kalmon Post at Mt Sanai in NY for my first consultation.  When he did, he strongly encouraged me to pay out of pocket for that consultation (Post is not in my insurance plan) because of the respect he has for that doctor in these cases. That will occur next Tuesday. I don't know if anyone else will be there (a neurologist??).

After that, I will probably speak to the ENT and GP again, work on the possibility of getting my insurance company to give me special permission to use Dr. Kalmon (all my doctors said they will do all that is possible to help) and also look for second and possibly third opinions (other surgeons) in case I prefer someone else and to get more insights.   At this point I need to take it one step at a time or I will get too stressed from information overload. 

After Tuesday, I will report what Dr Kalmon had to say here. THen perhaps people can give me more suggestions as to the next steps.

I took a little Xanax last night and got a great night of sleep. I feel a LOT better today. I'm off from work today and will  meet with some friends for lunch and try to have a good time.

THank you

Hello everyone else.  ;)



1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

wcrimi

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Re: I just found out. :-(
« Reply #21 on: September 11, 2008, 07:26:40 am »
Hello Wayne--

Welcome to the forum. I'm 55 yo, and I had radiation for a 7mm AN 18 months ago. IMO, some of the "information" on the web exaggerates the potential longterm risks of radiosurgery for ANs. A website that is quite thorough in reviewing the options and the different responses that doctors will give is at the University of Pittsburgh acoustic neuroma site

http://www.acousticneuroma.neurosurgery.pitt.edu/

From my perspective, the only real downside to radiation is that it can take a long time (several years) to get definitive evidence that it has worked. Very often, a dead AN doesn't shrink--it just stops growing, and doesn't do any further harm.

I was very depressed and scared when I was first diagnosed, but once I started reading the primary medical literature at pubmed.gov, I came around to the view that this is a treatable condition. I hope things work out as well for you as they have for me.

Mac

Mac,

That's an excellent resource. I just took a little time looking there and obviousyl have a lot of reading to do.  THanks
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Mickey

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Re: I just found out. :-(
« Reply #22 on: September 11, 2008, 08:14:53 am »
Dr Roland and Golfinos are located ant NYU medical center. They have great experience on AN`s. There are alot of people here who have chosen them.  My AN is still on the small side 12X06 mm but if it  grows any larger I will probably have it taken care of. I am 60 yrs. old and just am hoping that its reached its limit. I`ve had symptoms going back MANY years. This is why I`m hoping its reached its limit. From my research 40% do reach a point and stay that way. Mickey

wcrimi

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Re: I just found out. :-(
« Reply #23 on: September 11, 2008, 08:30:53 am »
Dr Roland and Golfinos are located ant NYU medical center. They have great experience on AN`s. There are alot of people here who have chosen them.  My AN is still on the small side 12X06 mm but if it  grows any larger I will probably have it taken care of. I am 60 yrs. old and just am hoping that its reached its limit. I`ve had symptoms going back MANY years. This is why I`m hoping its reached its limit. From my research 40% do reach a point and stay that way. Mickey

Thanks Mickey.

I have one last question about Roland and Golfinos.

I did some quick research on both:

1. Golfinos seems to be in my insurance plan (Aetna), but Roland is not.   I wonder is Golfinos can work with someone else or there is another way to cope with that.

2.  In their profiles at NYU, it actually looks like Roland is more experienced at AN, but that may be a matter of their profiles and not the reality.

Which actually does the surgery (one or both?)  I would be concerned if I can't get the team and I wound up with the weaker half. 


 

 
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

Mickey

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Re: I just found out. :-(
« Reply #24 on: September 11, 2008, 10:32:48 am »
Hi wcrimi! Yes I had the same problem with one insurance covering and one not. The told me they would work it out and so far so good! Golfinos is the actual neurosergon. If you decide to use them let them know your situation and they should be helpful as they were with me. I`m going to Email Dr. Roland something and let him know that this may be happening. Mickey

Nancy Drew

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Re: I just found out. :-(
« Reply #25 on: September 11, 2008, 01:21:31 pm »
Hi Wayne,

I don't see anythiing wrong with taking Xanax as long as you don't use it long term.  I have been known to take an Ativan at times.  I do take sleeping meds, but I have taken them for over 12 years now.  However, I take them because I have an anxiety disorder and bipolar disorder that keep me from sleeping.  Usually not a standard form of treatment, but my mania gets really bad without sleep.  But, I must admit that the anxiety from this AN can fight my sleep meds sometimes.  It stinks.  I spend a lot of time during the day worrying about my AN, and I have decided that I will not think about the AN when I go to bed at night.  It works sometimes ,and at the end of the day, I must admit, I am sick and tired of thinking about my AN.  I am actually starting to enjoy going to sleep at night because I have given myself permission to quit thinking about the dang thing.  I also think my sleeping habits have gotten better now that I have made my treatment decision.  That takes a load off!!!

My GK team consists of a neurotologist/otologist, a radiation oncologist, a neurosurgeon, a physicist, and a nurse at the GK center where I will be having my treatment.  I met with all of them except the physicist, and I haven't had any insurance problems because they are all on the team at the GK center where I will be going for my treatment.  I don't know if you are considering radiation or not.  I have no idea how surgery works team wise because I chose not to go with surgery--just a personal decision.  People with small tumors sometimes have more options.  Some like the idea that the AN is "out of there", but I am content with just trying to "kill" it.  No matter what, you will have to be the one who makes the final decision (unless surgery is your only choice for various reasons--like location and size), and you will know what makes you feel the most comfortable once you have done your research, talked to doctors and found your "gut feeling".  It is not an easy decision so don't be too  hard on yourself.  It stinks having an AN.  At this point, I can't find anything positive about this AN except that I was lucky enough to have found it when it was small.  Once I am in the clear down the road, then I will breathe a sigh of relief.  Don't know exactily how you feel because we are all different, but I can say that I wish you the best and hang in there.

Nancy

P.S.  I found someone in my area who had their GK done by the same docs I will be using.  I went to his docs for a second opinion, and I ended up changing over to them.  My old AN doc was OK, but my new doc fits my personality, has more experience treating ANs, and the guy I met here on the board has really been satisfied with his results.  Works for me!
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

jtd71465

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Re: I just found out. :-(
« Reply #26 on: September 11, 2008, 02:04:09 pm »
I had my sugery with Dr Roland and Dr Golfinos on 1/10/2007 and had an excellent outcome...but as I also state no two people and no two tumors are the same.  Send me a PM and I will give you my phone number if you wish to talk.

If you have multiple consultations one of them should be with the Roland / Golfinos team.

Joe-

BTW - I had the same insurance "issue" you have...we can talk about that also...

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

wcrimi

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Re: I just found out. :-(
« Reply #27 on: September 11, 2008, 04:14:10 pm »
I had my sugery with Dr Roland and Dr Golfinos on 1/10/2007 and had an excellent outcome...but as I also state no two people and no two tumors are the same.  Send me a PM and I will give you my phone number if you wish to talk.

If you have multiple consultations one of them should be with the Roland / Golfinos team.

Joe-

BTW - I had the same insurance "issue" you have...we can talk about that also...



Thanks.

I have Aetna HMO.

I'm not ready to make an appointment for a second consultation because I haven't even had the first one with Dr Kalmon yet (next Tuesday). Right now I want to get through the first one, think about what he has to say and perhaps speak to the ENT again. My insurance does not cover Dr Kalmon. So even if I love him and what he has to say etc... I don't know if I'll be able to get a waiver to use him. These are some of the things I want to discuss with the ENT because he may be able to help and he may also have other names for me that I am fully covered for.

Supposedly there's also a  Dr. Philp Gutin and Craig Nolan at Sloan Kettering that are in my plan, but I don't know if they specialize in AN.  I was given their names by my cousin that works there because they are very highly regarded as neurologists and neurosurgeons.   

I'll probably contact you at a later date about the insurance issues. etc...
1 cm, 6mm, 4mm on Left side. Surgery performed 11/6/2008 by Dr. Kalmon Post and Eric Smouha at Mt. Sinai Hospital in NYC.
Normal hearing before, 85%-90% now, dizziness when walking or turning head, annoying hissing and high pitched tinnitus on and off, eyes have trouble adjusting to rapid head move

fbarbera

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Re: I just found out. :-(
« Reply #28 on: September 11, 2008, 09:29:12 pm »
Hello Wcrimi,

You've received so much great advice so far - sounds like you are well on your way to treatment and recovery.  As you've probably figured, the big decision you face at the onset is between radiation and surgery.  In my opinion, it's not an easy one and folks come down on different sides of the aisle all the time.  It took me lots of research and consultations to reach a place where I felt comfortable with my choice, and it sounds like you are beginning that process yourself, which is great.  If you'd like to hear more details about my own decision making process, I've recounted my experience in the website below (in my signature line).  I tried to include links to the resources that I consulted and some additional tips based on my own experience.  You can also read more about my post-treatment experience (a little bumpy, but overall positive) since having CK last summer.

These first few weeks are by far the most stressful.  So in a sense, it is all uphill from here!  The great thing is that whatever you choose, you'll be fine.

Good luck with your journey and pls let us know how we can help.

Francesco 
     
2.6cm right-side AN
CK @ Stanford, August 22-24, 2007
Tumor Size Stable, Hearing Level Unchanged, Occasional Symptom Flair Ups, No Facial Issues, Doing Well
For my complete Acoustic Neuroma story:  www.myacoustic.org

Debbi

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Re: I just found out. :-(
« Reply #29 on: September 15, 2008, 02:14:10 pm »
Hi again-

Just wanted to respond to your question about Golfino/Roland and insurance.  Like Joe, my insurance covered Golfinos, but not Roland.  Dr. Golfinos office handled things with the insurance company to make sure I was covered - they do this all the time, as it turns out. 

Regarding experience, these two guys have been operating together on ANs for about 10 years, I beleive.  Dr. G is a little younger than Dr. R so probably has less overall surgical experience, but as a team, they do 60+ of these a year.  They both do the surgery as a team, which is the common protocol.  Dr. G is a neurosurgeon and Dr. R is a neurotologist.  If you do  a search for either of them, you'll find a lot of info on this forum about them. 

BTW, I also have Aetna, although not an HMO.  I had no problems at all having this all covered. 

Like Joe said, I'd suggest that you have a consult with the Golfinos/Roland team if you're in the NY area.  Ultimately, whoever you choose should be someone you feel very comfortable with, and someone who has significant experience in treating ANs.

Good luck and feel free to PM me if you want to chat. 

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com