Author Topic: I just found out. :-(  (Read 21698 times)

wcrimi

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I just found out. :-(
« on: September 10, 2008, 09:31:57 am »
HI all.  My name is Wayne, I am 49 years old.  I've just been diagnosed as having a benign acoustic neuroma.

I had been hearing a high pitched tone in my left ear for a couple of days when the room was totally silent or when I laid down on a pillow against that ear. So I went to my doctor. He didn't find any wax, infection etc.... When it didn't improve after a week, he sent me to an ear, nose and throat guy. He gave me a series of tests. He told I had some slight hearing loss in that ear (a surprise to me because I didn't notice it at all) and sent me for an MRI of my head. I got the news the next day.   
 
I'll be seeing a neurosurgeon next week for a consultation. My ENT recommended Dr. Kalmon Post in NY at Mt Sanai (I am in NYC). I see that Dr.Post is isted on this site (which is encouraging).   My coverage doesn't include him, but at this point I'm going to pay him out of pocket to get his opinion because my ENT is very high on him.  I may also see a Dr. Gutin at Sloan Kettering on the recommendation of my cousin that works there.  I will probably get a second opinion somewhere.

I also read the MRI report.
 
Fortunately, it's not large. It measures 9 millimeters long, 6MM and 4MM wide and deep. It is mostly in my ear canal and not entangled in the other nerves in the area. I believe the protruding end is just barely touching my brain.

Needless to say, I'm a scared and a little depressed.

Most of what I read on the internet suggests that permanent hearing loss is highly likely and vertigo issues are almost a certainty (not to mention the face and eye issues) if I get surgery.

It sounds to me like the the surgery option is risky in the short term and likely to lead to these post opt side effects (not to mention the psychological impact). The gamma/knife and other radiation treatments sound easier in the short term and less likely to produce immediate negative impacts, but there are larger long term risks.  I'm not sure if I'll even have a choice.

I am hoping that because my tumor is quite small and I may still be able to use Dr. Post, the prognosis for me is a little better than average, but obviously I don't know anything yet.

Any insight at all into my prognosis given the details I know to date, Dr Post's or Dr. Gutin's record etc... would be greatly appreciated.   :'(
 



 
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

Kaybo

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Re: I just found out. :-(
« Reply #1 on: September 10, 2008, 11:03:28 am »
Wayne~
Hello!  Understandably, this is a very scary and confusing time, but we are all here to support you.  This is a great community of people who will help you in any way that we can.  I'm sure others will chime in on your size & location and different treatment options!  I just wanted to say "Welcome!"

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

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Re: I just found out. :-(
« Reply #2 on: September 10, 2008, 11:05:15 am »
Hi, Wayne -

sorry to hear you have an acoustic neuroma, but you've come to the right place.  And in case you didn't realize it 99.9% of all ANs are benign; IMO good news!

Your AN is small, which gives you three options at this point.  Watch & wait, radiation, or surgery.
 
I don't want to sway your decision, because treatments need to be personal decisions based on research, but surgery isn't as bad an option as you seem to think it is.

There are lots of AN patients who chose surgery, myself included, who "survived" it quite nicely  :)  While I do have SSD (single-sided deafness), I do not have vertigo, tinnitus, facial paralysis, or big balance "issues".  I tell you this, not to brag, but to point out that there are "good" surgery stories.

Radiation is also a wonderful choice, and obviously much less invasive than surgery, but - like surgery - it's not everyone's choice.

Permanent hearing loss sometimes happens; sometimes doesn't and it doesn't always depend on which treatment option you pick.  One thing is for certain, everyone's AN journey is not the same.  And BTW, there are options to help you cope with permanent hearing loss if you feel you need them.  I'll save that for another time, though.

I recommend you contact the ANA and ask them to send you some of their information - brochures that are written in "plain language", not "medical speak".  Most find this information very helpful.

There are many members of this forum from your area - NYC - so I'm sure you'll find lots of "local", as well as "non-local" help here.

I know that Drs. Roland & Golfino are in your area and they seem to have wonderful reputations - as do several other docs.

Jan

« Last Edit: September 10, 2008, 11:07:03 am by leapyrtwins »
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

wcrimi

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Re: I just found out. :-(
« Reply #3 on: September 10, 2008, 11:31:12 am »
Thanks for the quick response.

I guess I will know a lot more after my appointment next Tuesday. The first day I was told, I did a lot of quick research and was very upset by what I read. When I saw my MRI report, I calmed down a little. But last night I started doing more research and I'm a mess again. I'm not sleeping or eating much. I just can't.

Anything anone can add about the doctors I mentioned etc.. would be greatly appreciated.

One thing I woud like to know more about are the long term downsides to a radiation treatment. I have read that they don't really like to do that as much if you are very young because some of the downside risks make themselves present over the longer term. I'm sort of in the middle at 49. My health is otherwise pretty good and living a long life is not unusal in my family. 1 grandmother reached 101 and anther is 96 right now. My father and mother are still alive.

Does anyone know off hand what the reaserch looks like for say 20 or 30 years out?

I think I need a day to stop reading too much on this. I need a rest from the anxiety. 
« Last Edit: September 10, 2008, 11:42:10 am by wcrimi »
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

Nancy Drew

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Re: I just found out. :-(
« Reply #4 on: September 10, 2008, 11:34:27 am »
Hi Wayne,

My AN was small when it was discovered by accident.  I have W&W (watch and wait) since 12/05.  MRI showed slight growth 5/08.  I have that same high pitched noise also--especially in quiet places and at bedtime.  I have been told this is tinnitus which is a symptom sometimes with ANs.  My hearing is pretty good, but I decided to go ahead with GK anyway because I don't like the fact that it is now starting to grow.  I have been told, though, that it is also a candidate for continued W&W by a couple of doctors.  Then some other doctors said better to get it treated now while it is small.  I think you will hear all types of theories from doctors--reputable doctors included.  I did lots of research, found a good doctor, and went with my gut feeling.  I lliked the GK choice, but that is only because it felt right for me.  It is clearly a personal decision unless your AN is in a critical area, and then you might not have as many options.  So, I just wanted to share some of my story with you.  It is a scary think to find out you have an AN, but you will get through whatever comes your way.  I will be updating in Oct. after I have my GK.  Hopefully all will go well, and I am really concerned about the hearing aspect since I have fairly good hearing.  There is a risk to every type of treatment, but I think for the most part people seem to do fairly well.  Best wishes as you find your way through this AN journey.  It is "normal" to be confused, scared, to flip-flop on your decision, and to finally get to your decision.  Hang in there.  You will come through.  Keep researching and find a doctor you feel comfortable with.

Nancy
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

Jim Scott

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Re: I just found out. :-(
« Reply #5 on: September 10, 2008, 11:37:58 am »
Welcome, Wayne -

Of course no one wants to see another person diagnosed with an acoustic neuroma, even though they are almost always benign, but since that is the reality for you, I can assure you that you've found a very welcoming place at these message boards and a very useful website, as well.  Jan ('leapyrtwins') covered the basics quite throughly and I hope you'll take her comments seriously, as she offered you some solid advice. 

I'm another AN patient that came through both surgery and radiation with few ill effects, except to the tumor.  I wouldn't be so presumptuous as to recommend a specific treatment to you because I'm not a doctor.  Besides, as Jan mentioned, AN treatment is a very personal decision that should be made with the help of a physician and as much knowledge as you can get your hands on.   We can offer you that kind of information as well as very practical tips.  We can also answer the kinds of questions that are not strictly medical. 

Frankly, both surgery and radiation have their respective good and not-so-good points but, again, that is something you'll need to decide for yourself.  Surgery is invasive and presents specific risks, such as infection while radiation also carries it's own set of risks. This is why you'll need to research each procedure and consult with more than one doctor.  Unfortunately, doctors have the all-too-human trait of occasionally being biased for or against either surgery or radiation and this has to be taken into account when you have a consultation.  Many of us have trod this path and can offer you some tips and questions to ask during a consult.

Feeling a bit depressed and frightened upon receiving a diagnosis of an acoustic neuroma is perfectly normal.  We've 'been there' and can empathize with your state of mind right now.  Be of good cheer, there is a lot of information available on ANs and this website is a prime source for it.  These forums are also a solid base of support, populated by those who have, had or are related to someone with an AN.  Many folks here are waiting to welcome, inform and support you in any way possible in the weeks to come as you deal with this situation.  I look forward to seeing your posts here and trust you'll give us the opportunity to do whatever we can to help you. :)

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.

wcrimi

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Re: I just found out. :-(
« Reply #6 on: September 10, 2008, 11:39:39 am »
Nancy,

Can I ask you if your size is comparable to mine?

9mm/6mm/4mm

Wayne
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

ppearl214

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Re: I just found out. :-(
« Reply #7 on: September 10, 2008, 12:42:45 pm »
Hi Wayne,
 
welcome!  I know it stinks to have you here... but, it's awfully good to have you here :) I see everyone is giving proper welcomes to you and glad to see you jumping in, sharing and doing some research.

My AN was the exact same size as your's... diagnosed 3 yrs ago... treated by Cyberknife Radiosurgery 2-1/2 yrs ago... just had my 2-1/2 yr follow up ... they were able to save my hearing and I'm doing fine.... I knock on wood, I have done well.

You will read many stories/experiences here about all forms of treatment for your "small" AN.  Yes, it is deeemd as "small" and you have options to choose for treatment.... for when the time is right to do treatment.  Become the best, well-informed patient you can be.  Take this time to research, research, research. If your mind becomes overloaded by the amt of info you read... then take a step back... take time for yourself to mentally regroup so then you can continue your research. We all step back and take breaks as needed... please remember to do the same yourself.

you already know it's benign... it's very treatable.....and the most important of all... you are not alone. We are here to help with answers and to cheer you on.

Hang tough!  Again, welcome!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

wcrimi

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Re: I just found out. :-(
« Reply #8 on: September 10, 2008, 01:11:36 pm »
CWOOD and others,

I have to ask a question about the MRIs.

I was given a paper report and a ton of film to take to my first consultation.  Is that the kind of thing you are sending out to these other doctors and/or services or did you receive it in a different format that is easier to transport (like a CD or something). If it's the latter, perhaps I will have to request that. Either that, or I am going to need multiple copies of the film. Right?

Also, I'm a little confused about terminology.

I have an ear nose and throat doctor that diagnosed it and gave me the name of the surgeon to see for a consultation.  Is "neurotologist" the fancy term for an ENT?

This is the profile of the surgeon?

http://www.mountsinai.org/Find%20A%20Doctor/profile.do?id=0000072500001497302922&officeDrawer=pat

I'm not sure what title he has either.








 



Wayne
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

ppearl214

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Re: I just found out. :-(
« Reply #9 on: September 10, 2008, 01:14:46 pm »
"KOODO's" CWood! Great job! Just want to share a few things from your post.

re: Radio-treatment options.. there is data going back far beyond 10 years. GammaKnife has been around for approx 40+ years and a very viable treatment option for AN's... Cyberknife has been around for approx 12-15 yrs (give or take) and data available as well. Just FYI only :) But, you done good.

there are also many other locations/physicians that will do "free" reads of MRI's as well. HEI has a wonderful reputation and is not the only ones around that offer this... they are a terrific reference, absolutely.  But others offer it as well (ie: Dr Medbery in OKC, etc).

Otherwise... you earned your KOODO's :)

Wayne, if you ask the MRI center to burn a CD for you, they will. Some charge a fee, some don't so check first with them. They will do it.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Debbi

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Re: I just found out. :-(
« Reply #10 on: September 10, 2008, 02:32:08 pm »
Hi Wayne-

You may want to consult with Dr. Golfinos at NYU. He and Dr. Roland (the neurotologist) did my surgery in April; however, Dr. G is also in charge of the GK treatment at NYU and he can talk with you about both options.  I am a huge fan of both Golfinos and Roland (as are a number of other folks on this board), but ultimately, you need to find a team you are comfortable with - and hopefully one that is "in network." 

As others have said, based on size, it seems like radiation would certainly be an option for you.  And, yes, some doctors don't like to do it on us "younger" folks (I'm 52), but that shouldn't stop you from considering all your options. 

BTW, I've read good things about Post on this site.  Also Steig at Presbyterian and Dr. Choe (check Wendysig's profile for hospital).  Since you are in the NY metro area, you have lots of good/great options. 

PM me if you want to chat.

Debbi
« Last Edit: September 10, 2008, 02:35:21 pm by 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

macintosh

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Re: I just found out. :-(
« Reply #11 on: September 10, 2008, 02:51:19 pm »
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

ppearl214

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Re: I just found out. :-(
« Reply #12 on: September 10, 2008, 03:06:25 pm »
Hey Mac! great to see you!  :) Been a while since I have seen you... my bad, I guess.

thanks for sharing the info re: AN's and radiosurgery. I see you posted the Univ of Pitt info which has a primary focus on GK (GammaKnife).. in fairness to balance the discussions, I'll also share the CK (cyberknife info) so we can have a fuller spectrum of discussion. I'll note the CK Patient support forums as a balance since the docs there, that volunteer their time to answer patient questions, are also well-versed on GK and CK (and other radio) protocols.

http://www.cyberknifesupport.org/forum/



Great to see you! Hope you are feeling well. :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

wcrimi

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Re: I just found out. :-(
« Reply #13 on: September 10, 2008, 04:02:45 pm »
Well I just got back from the ENT's office because he also wanted me to have a Dolpar test (it was scehduled before we had a diagnosis).  While I was there, I stopped in the MRI place to ask about getting my MRI on a CD.  It was $20. Kind of expensive, but I can't worry about that.  They should have it for me on Friday. I can then send it other doctors outside NY if need be.  I think it costs another $20 for more copies. If I send it out, I wonder if they will send it back if I want to send it to another doctor. I also wonder how timely they'll be about it.  Maybe I should have gotten several copies.  Oh well. 

I'm still a little confused about neurologist and neurotologist and neuro surgeon. 

DR Kalmon is a nuerosurgeon but I don't understand if he is a neurotologist. I assume yes. Perhaps he has a neurologist he works with that I might also eventually meet.
« Last Edit: September 10, 2008, 04:24:07 pm by wcrimi »
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

Nancy Drew

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Re: I just found out. :-(
« Reply #14 on: September 10, 2008, 05:00:31 pm »
Hi Wayne,
                                                 
 Left ear AN 4.5mm x 4.7mm x 4.5mm diagnosed 12/05
                  5.4mm x 5.7mm x 6.2mm as of 5/08

My AN was found by accident, and I wasn't really having any bothersome symptoms at the time.  I figured since it was found by accident and wasn't causing any problems, it would be best to W&W.  Figured it would be one of those ANs that would never grow.  Only slight growth in the past year, but I am having some problems that I had not had before--tinnitus, slight hearing loss and occasionally plugged ear and ear pain.  I know it is "there" now whereas when I was in W&W mode, I really didn't think about it until the annual MRI.

If this helps . . . when I found out my AN had started growing, I knew it was time to make some kind of decision . . . even if it was just to continue to W&W.  I became obsessed with my AN.  I became a computer junkie, quit eating (lost 10 pounds, that's OK), and had sleep problems.  Many can relate.  I am an emotional person, and I have just about driven myself crazy at times.  A padded room was looking good until I finally made my decision. 

You are beginning your journey, and it is not fun.  A day will feel like a week, a week will feel like a month and so on when you are going from doc to doc, researching, etc.  I would say that just because your AN is small like mine, every case is different.  Symptoms . . . . keep on top of them and report to your doc.  I think my AN started growing 6 months before I had my annual MRI.  I downplayed the symptoms.  When the doc told me it had grown, I already knew it.  If you do decide to W&W be sure to get those annual or six month MRIs or whatever the doc recommends.  Best wishes as you travel this journey.  And, it is OK to be angry . . . it comes with the AN.

Nancy     
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

 


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