ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: wcrimi on September 10, 2008, 09:31:57 am
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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. :'(
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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
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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
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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.
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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
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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
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Nancy,
Can I ask you if your size is comparable to mine?
9mm/6mm/4mm
Wayne
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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
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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
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"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
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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
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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
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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
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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.
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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
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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
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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.
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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
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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 :)
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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
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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. ;)
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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
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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
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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.
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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
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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!
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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...
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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...
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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
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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
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Hi and welcome,
Sorry you have to be one of us, but we're happy to have the company and to help. My AN was not a candidate for anything but surgery so that's what I did. (I would have jumped at CK or GK). Doing just fine now and went back to work full-time today.
The weeks between dx and surgery were very difficult--couldn't eat, sleep, same as you. I took Zanax on and off during that time and it got me through pretty well. That and this forum, that is!
Best,
Marci
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Thanks for the further info.
Tomorrow is my first consultation with Dr. Kalmon Post at Mt Sanai as recommended by my ENT.
I have my second consultation narrowed down to one of two teams. (Galfinos/Roland and a team at Sloan Kettering). I want to do a little more research and talk to my ENT again after the consultation before deciding which team to see next. Wish me luck.
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MAlegant,
Did you retain any hearing in that ear?
Wayne
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Wayne,
I retained virtually all of my hearing. Will know for sure after a test on October 7, but I don't think I lost very much. If I did, it's not bothering me too much but I'm a musician (not practicing now) so it may have an affect once I start singing again. Fortunately that is no longer my day job!
Best,
Marci
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Dr Kalmon Post at Mt Sanai seems to prefer the surgery option, but admitted he is biased. He has done 500 of these operations (2 yesterday). He claims a 99% success rate and suggested that given the size of my tumor, the chances of keeping my hearing are between 65% and 80%.He told me that typically it is all or nothing regarding keeping hearing. He thinks any other synptoms are very likely to not be a problem long term. I'm going to take a BAER Audiogram (srt/disc/pta). After that test, he'll be able to give me a better estimate.
He was not against radiation, but pointed out that there is little data beyond 20 years.
I'm going to start making a decision on who to see for my second opinion tomorrow. I think Dr. Golfinos looks like a good option because I believe his team does both surgery and radiation. So I may be able to get a more neutral opinion.
All in all, I was very satisfied that if I choose surgery and Dr Post does it I will be in very good hands.
Oh yea, insurance will not be a problem. One of the other doctors on the team is an Aetna doctor. So everything will be done through his name. yipee
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One other thing that Dr Post said was that if I choose the radiation route, another team that works for him will do it. They do not use the Gamma Knife. They use Novalis BrainLAB. He said it's mostly a brand difference. Any ever hear of this or have it used on them?
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One other thing that Dr Post said was that if I choose the radiation route, another team that works for him will do it. They do not use the Gamma Knife. They use Novalis BrainLAB. He said it's mostly a brand difference. Any ever hear of this or have it used on them?
I have heard of Novalis, and more recently about the BrainLab upgrade to it. It is still a different system from GammaKnife, but the improvements do put it in the same class for precision, if not exactly equal. It seems to me a reasonable way to do radiation treatment, although I would still pick CyberKnife or GammaKnife over it if I had the choice.
Steve
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Did anyone ever hear of a BAER Audiogram test?
I am having a nightmare with insurance issues with Aetna HMO.
I am trying to get a referral from my GP to another ENT that performs that test. The idea to take that test comes from Dr Kalmon Post who is not in my insurance plan, but gave me the name of a Dr that performs the test. My GP is hesitant to do a referral to another ENT for a test he knows nothing about.
Supposedly, this test will allow Dr. Kalmon Post to better guage the chances of me retaining any hearing after surgery if I elect that route. Knowing the probability might make the decision a little easier.
The other problem is that I don't even know if this test is on the approved list of tests for my plan. So I don't know if it is covered.
If anyone has any idea at all about any aspect of this or can make a suggestion, I would appreciate it.
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Hi again,
I would just add that until the surgeon's are actually in there, they make no guarantees. They knew my tumor was not invading the auditory canal and said they thought they could save my hearing but still no guarantees. Surgery was really my only option. My tumor was not small, so I figured as long as I came out alive, I would do my best to deal with whatever side effects I was left with. As a musician my hearing is especially dear to me but I was willing to sacrifice it if that's what it took. Like many of, us, I feel my doctors were superb and so was the standard of care I received at University Hospitals. I had two surgeons, for whom this type of tumor was their specialty, who also have done so many of these surgeries.
It sounds as if you have been very fortunate in finding doctors that you like and in the decision making process. Regarding BrainLab, someone on this site has spoken of it before so if you just search for it you may get more information. Again, no matter what you choose, experience and success rate in your doctors is paramount.
Good luck with all,
Marci
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Did anyone ever hear of a BAER Audiogram test?
As everyone knows, BAER stands for brainstem auditory evoked response. Google is your friend. :)
http://www.dizziness-and-balance.com/testing/baer.htm
The value of the test is that it can demonstrate whether the nerve itself is in good shape. If it is, the hearing loss you have is more likely due to damage to the cochlea, perhaps from having its blood supply hijacked by the AN. In that case, saving the nerve may preserve remaining hearing. If the nerve does not show a good response pattern, it is probably damaged, and complete hearing loss on the affected side is more likely. Or something like that.
Steve
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Steve,
At this point I have no hearing loss. I tested normal hearing on both sides. In fact, the side with the tumor actually tested slightly better. The only symptom I have is slight tinnitus in the bad ear.
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I wanted to comment about the beyond 20 years of data regarding radiation. Surgeons take a lot of heat for this one but in a way they are correct. The longest running machine is the gamma knife first used in the very late 60's. All during the 70's and 80's it was used exclusively for the elderly. These people are simply not around anymore for follow-up data. Also, during these decades the results weren't very good because the doses were way too high. It wasn't until the early to mid nineties that the gamma knife was used more on the younger and the number of young patients was still small but certainly growing. I waould say that we have a strong 15 years of study but this isn't quite long-term yet for the young person where life expectancy could be 30, 40 or even 50 years out. What people consider young is an entirely different topic. :)
As far as surgery it does seem like you'll be in good hands but you do have perfect hearing right now. The odds seem good that you would keep your hearing with surgery or radiation. As the previous post mentioned they really won't know until they get in there if you decide on surgery. You're likely gonna need treatment at one point but waiting and watching is also a very good option. When the tumor is small with little damage there are many options not to mention figuring out all the various radiation machines. We can all relate to the emotional impact this can have on people and just wanted to welcome you and hope everything turns out okay.
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I have set up a second consultation. This time with DR. Galfinos on 9/29. I hope to get a more balanced view about radiation vs. surgery and some more estimates about the chances of keeping some or all of my hearing either way. I am also getting a BAER Audiogram on 10/1. Dr Post told me that would help with his estimation of the chances.
I still have higher levels of anxiety and feel mildly depressed, but I'm eating and sleeping better.
To be honest, some of the biggest stress somes from dealing with doctors and insurance companies for referrals etc... ::)
Thanks for all the support.
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I saw Dr. Galfinos today and was pleased with the consultation. He described the surgical procedure and laid out the pluses and minuses relative to gamma knife.
Unfortunately, I forgot to ask him a question about the surgical technique that maybe someone else can answer. He said they basically cut the nerve related to balance (where the tumor is) and take it out of the equation. Then the nerve on the other side takes ove the balance issuesr.
Does every surgeon do the same exact thing?
For some reason I was under the impression that they just cut out the tumor and if there were any balance issues the other side took over, but the nerve stayed. Anyone?
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Hi Wcriml,
Just wanted to pop in here and say that I hope everything is going okay for you and that you are getting all of your questions answered okay. I also wanted to say that you are one of the lucky ones to have had your diagnoses so fast from your ENT. I presented with more symptoms than you had, but never got an MRI until the next YEAR. So it took almost a year for them to figure out what I had. My AN is bigger (ooo, just felt like a kid again. My AN is bigger, ha ha ha ;D) and my symptoms appear to be sticking with me, probably forever! Bummer.
I also sympathize with your anxiety and depression after learning about something you probably never have even heard of before. I liken it to the Road Runner cartoons. If you remember seeing those at all....Wile E. Coyote would look both ways down a long, long railroad track with nothing in sight for a hundred miles each way, until he stepped out onto the track and then BAM, that old train would nail him and he would be on the front of the train, spread eagle, with a wild look in his eyes. I thought of that, and thought, there I am - spread Eagled on the front of a train, traveling 100 miles an hour with me wild-eyed and panic stricken. I think we all feel that way after our doctor tells us we have something in our heads that shouldn't oughta be there.
Just letting you know that I fully understand. Hang in there!
Sue in Vancouver, USA
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Sue~
I finally get to "see' you!! Love the picture!! ;D
K
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Yeah, I finally decided to add my mug to the AN "line-up". I agonized over the photo, and I was going to find one of me from 30 years ago, but finally thought - oh well!
Sue in Vancouver USA
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Hello Sue,
You have a lovely face, can't understand why you have been hiding it for so long!!!
Your neighbor in Beaverton,
Jackie
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*blush*
Thank you. But, you know - gravity has had it's way with me. :o
Sue
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Sue,
You are beautiful!!!
Anne Marie
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Ah gosh, now yer all goin' ter give me a swelled head, and everything! ;)
Sue in, oh you know...that town next to Portland.
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Wcriml,
Interesting about your hearing. I have the same thing. Better hearing in my nonAN ear also. Go figure. However, I do think the AN swells sometimes, and it affects my hearing. I am going into GK with fairly good hearing, and I hope to come out with fairly good hearing. Best of luck with your research, dealing with your insurance and making your decision. My GK is next week. I am on edge, but I am glad the date is in sight.
Nancy
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I just wanted to say that i don't agree that vertigo is a certainty. I am nearly 4 months from surgery and have no dizziness or vertigo. My balance is great, even with my left eye covered (due to double vision, which is resolving slowing and paralysis).
I was dizzy in the hospital (7 days) and left in a wheel chair and had a walker. But i ditched the walker after a day. I was picking up my 18 month old (carefully!) after 3 weeks. I avoided the stairs at home (only to the basement as we have a bungalow) for a month, out of caution. I was walking outside after 2 weeks (although i had company and used the baby stroller for additional support) and did my first run at 2 months. I am now back at work (wearing 2 inch heels).
I don't know if this is all "normal" and certainly i have some challenges. I just wanted to mention that everyone is different and not to assume any result is a given. I am 39 and in good health, but was sure much better before surgery... I had only some hearing loss and tinitus. On a good day i feel about 95%, happy and healthy. On a bad day i feel broken and frustrated. I definitely have a lot more good days than bad. I like to look on the bright side.... that i have a "condition" which gets a little better every day (unlike something that gets worse over time).
The recovery has not been easy, and it feels like a long long road. Everyone has a different experience. Good luck with your decision and try to stay positive. ;)
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wcrimi -
I don't think every doctor does the exact same thing, but there are certain commonalities to AN surgery. I think it's fairly common to cut the balance nerve and I believe mine was cut in the course of my surgery. The body does adapt over time and while my balance isn't perfect, it's definitely much better than it was pre-op and for the first few months post op.
Now I only notice my balance issues - and they are fairly slight - when I'm tired.
Jan
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Calimama,
That was such a positive story to tell. Thanks for sharing. Your baby looks so cute, and I bet she is happy to have her mommy doing so well. I think there are a lot of positive stories here, and they give inspiration.
Nancy
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Hey Sue and Jackie -
I was just in Beaverton last week visiting my parents! Of course, we also visited some pinot noir vineyards, too! ;D Beautiful part of the country.
And, Sue, everyone's right - you look gorgeous!
Debbi, back in NJ
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Thank you for the nice compliments. That photo was taken on March 1, my 62nd birthday, just about 2 weeks short of 2 years since my diagnosis. I am scrunched between my hubby and tall son, so I had to crop the picture. If, when I had those very brief dizzy spells back in about 1994 or so,and it'd been bad enough that I would have had an MRI, I'd have been treated then. For some reason I wasn't supposed to do that then, I guess. Different path, different outcome, who knows?
Sue in Vancouver, USA
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Ah Gee Deb,
Wish I had known you were coming, It would have been fun to meet! Did we have our great weather for you, I hope?? Next time, do let us know, we could all have a get together, including Steve and DHM, and Kelly and Sue................
Jackie
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You bet! Let us know!
Sue
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I saw Dr. Eric Smuhas at Mt. Sinai the other day. He is a team member with Dr. Kalmon Post. He did some more tests on me and feels that the chances of me retaining my hearing are in the 70% range because eveything is pretty normal now. The only symptom I have now is mild tinitus.
I have decided to have surgery. All I have to do now is make a decision about which team will do it (Post or Galfinos) and set things up. Both are very experienced and made me feel very comfortable. I am leaning towards Post only because my original ENT recommended him and told me that's who he would go to.
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Trust your gut and you won't go wrong. You have narrowed it down to two excellent choices, so you will be in good hands no matter what. Most important thing is that you feel completely comfortable.
What type of surgery are they recommending? (Obvisouly not translab if they are saying you can retain hearing!)
Keeping you in my thoughts,
Debbi
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wcrimi -
congratulations on making your treatment decision. I know from personal experience just how hard that is.
Please make sure you put your surgery date - when you get one - on the AN Calendar so we can all wish you well prior to your big day.
Thanks, ;D
Jan
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Unfortunately, I may be having some insurance issues that I was told I wouldn't have because Dr. Post in not in my HMO PLan, but Dr Smouhas is. I will find out shortly. I may try to get an "out of network" referral. If that doesn't work I may try to negotiate something with the insurance company. I hate insurance. Sometimes it's almost as stressful as the health problem. :'(
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Pls take a look at the "Insurance" forum here... this has been enough of a point of contention that the forum was necessary. Many here have shared how they beat the system with insurance carriers and have posted there. Hope it helps.
Hang tough......
Phyl
Unfortunately, I may be having some insurance issues that I was told I wouldn't have because Dr. Post in not in my HMO PLan, but Dr Smouhas is. I will find out shortly. I may try to get an "out of network" referral. If that doesn't work I may try to negotiate something with the insurance company. I hate insurance. Sometimes it's almost as stressful as the health problem. :'(
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Congratulations on making your treatment decision, Wayne. That was really pretty fast! Know it is a relief.
Now to cross the insurance hurdle! Good luck and keep us posted about your surgery date...and did you say which procedure you were doing? I may have missed it...
Take care,
Cindy
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I have a tentative surgery date of Novemer 6th. We are still working on the insurance issues, but I am fairly optimistic "something" can be worked out. It's very stressful to have that hanging over the situation.
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Hey Wayne,
Well then, you're heading in the day before me! I'll look to you to lead the way for a successful couple of days for us!
Keep us posted!
Cindy
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Hey Wayne,
Well then, you're heading in the day before me! I'll look to you to lead the way for a successful couple of days for us!
Keep us posted!
Cindy
Good Luck Cindy. I am having some of my pre-op tests done tomorrow and am still working on the insurance issues. Uggggh.
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I am having my surgery tomorrow 11/6 at Mt. Sinai Hospital in NY. Wish me luck.
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Best of luck to you Wayne. Deep Breath!!!
Thinking of you Cindy!
Nancy :)
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I want to thank everyone for their prayers and kind wishes.
The surgery was a sucsess. The entire tumor was rempoved and at least some functionality was retained in the hearing nerve in the bad ear. I would estimate it's about 50% now, but the doctors have suggested that that is likely to improve in the next 4 weeks. The ultimate result will not be known for several weeks after further healing and hearing tests are done.
As a bonus, typically in these cases I was told the patient losses two functional balance nerves on the impacted side which get compensated for over time by the other side of the brain . I don't now how he did it, but DR.Post managed to save what he believes will be at least partial or full use of one (much rarer but harder to be test). That means when I am fully healed, it is likely my balance wil be even better than for the typical patient. He said from a neurological perspective, if you looked at 1000 acoustic neuroma cases, my result was somewhere in the top 50. I paid for him out of pocket because I was told I was getting the Michael Jordan of this condition....well it appears hit hit the game winner.
Right now my balance is poor. I need to walk with support, but I'm getting around well enough and even bathed myself. I also have some transitional symptoms with double vision in some fields. If that does not correct in time, (and the doctors think it will), we can cope with glasses. The doctors feel it was not a result of the surgery because they were nowhere near those nerves, but the surgery mave heightend some other visual wekaness that already existed or irritated a nerve temporarily.
The major obstacle was that on the day of my scheduled release, a medium sized kideny stone decided to move (nice timing huh). I was in such pain that they had to give me something stronger than morphine for relief. It did not pass and has moved to a sensitive area, but is pain free now. It will be be have to dealt with shortly. I'l start talking to my urologist later today.
I feel well enough to today to thank you all again.
I'll log on from time to time, but not often given how much I still have to deal with.
THanks for all the support.
You can contact me here but ny responses will be very limited. I need rest.
Wayne
(Hi Wayne, pls see my notation in your other post with your surgical update.. thanks for understanding! Hang in there! Phyl)
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Hi Wayne,
I am impressed that you are up and going. Sorry about the kidney stone. I'm sure you didn't need that!!! Sounds like your doctor is the Michael Jordan you were hoping for.....worth every cent I am sure! I admire all of you surgery folks. Best wishes for a speedy recovery.
Nancy :)
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Wayne,
You're in my prayers for a steady recovery. Mona