ANA Discussion Forum
General Category => AN Issues => Topic started by: waypoint on September 05, 2007, 08:53:21 am
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This is my first post. While I hate the fact that I am here, I am happy to have found this place.
My experience started about a month ago when I suddenly lost hearing in my left ear and suffering from the ringing. Steriods from the ENT doctor brought back the hearing but the ringing he said would take longer. He ordered an MRI to be sure. Well, the MRI revealed a what they termed "large" 1.4cm acousitc neuroma on the 8th intercranial. At 36yrs old. This was alot to take in last Tuesday. Now that I have had a week to think about it, I should have recognized the signs. I occasionally get mild headeaches, and my wife has gotten use to carrying advil in her purse just from me. The specialist, Dr. James S. Toung, M.D. with Texas ENT, has referred me to another specialist at the Texas Medical Center. Doctor C.Y. Joseph Chang, MD FACS. Is anyone here from Houston. I would love to hear who you went with and your outcome. My doctors appointment is Thursday morning to discuss the AN and go over options. My goal or expectations are 1. remove/kill tumor, 2.maintain quality of life (2a. no facial or nerve damage, 2b. perserve hearing in left ear.)
At this point, I am so overwhelmed. The internete has been a wealth of information, but not always good information. It seems that every approach has complications and everywhere I read on the internet people have problems. I am trying to read as much as possible now that I have found this site. My insurance has been a problem for me. For that I am thankful. I guess I just need a little direction or guidance. Specially from anyone that has experience local in Houston. Thanks.
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Waypoint,
I'm not located in your area however, I'd like to respond to your initial problem so that you have the contact when, you are feeling somewhat "alone." I realize that you have a wife and some support.
There will be people posting who have experience in the Houson area.
I had Cyberknife last year. Please continue your research and all your options.
Welcome to the forum...
Palace
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A few points for perspective: a 1.4 cm AN is not "large," and you have plenty of time to gather information and make a decision. The normal rate of growth for ANs is 1-2 mm a year, and the cutoff point for radiation is about 3 cm (which is also the generally used, though unofficial, point at which ANs are called "large.")
Everyone on this list recognizes the feeling you have right now of being overwhelmed with this news, but as you learn more and get control of this situation, it does get easier. I'm sure people from Houston will write in soon with more specific info and help. Above all: Do not feel as though you have to rush into anything. The more you learn, the better able you will be to make the best decision for you.
Mac
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around here ... 1.4 is small ! :D
Welcome to the group ... continue to research your options .. and Life does go on !! I just bought a used Kayak I can't wait to take it out this weekend !!
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Hi Waypoint
I was just diagnosed in July with an AN the same size as yours. I remember feeling scared and overwhelmed and I didn't know what to do. I was so sad and depressed. Luckily I found this discussion board! The people here are terrific! They will have lots of information for you. Read their comments and keep an open mind. Look in the Archive section of the discussion board too. I found some valuable information there as well.
Sorry I am not in your area but I agree with Macintosh....take your time making a treatment decision and don't rush into anything. Ask LOTS of questions, research all your options and get several opinions from different doctors. I started out thinking I would have to have surgery but the more I researched I found out I had other options available to me too. I plan on going with radiation. But that's just me....every person is different and some feel better going ahead with surgery and others choose to watch-and -wait. But no matter what you decide we are all here for you!!!
Good luck to you!
Susan
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Hi, waypoint:
I'm sorry you have a reason to be here but welcome, anyway. Unfortunately, I'm a long way from Texas and cannot offer any local recommendations as to doctors or medical facilities. I'll just offer you some information, advice and hopefully, perspective.
Feeling overwhelmed when first diagnosed with an acoustic neuroma tumor is normal. Most of us have been in your situation and can relate. However, knowledge and understanding of your options for dealing with this problem will eventually help to alleviate your very justified concerns. It certainly helped me (and many others).
Your AN is relatively small and can very likely be treated with non-invasive radiation. Ask your doctor about this. The cold, hard fact remains that, yes, even non-invasive treatment (radiation) carries some inherent risks. There is no treatment that any responsible physician can guarantee will not carry some possible adverse consequences. The trick is to read the literature available on this website (and elsewhere) that can show you the 'odds' of hearing loss, facial paralysis and other problems associated with AN treatment, including radiation. You'll be surprised by how much the odds are actually in your favor. However, this condition (AN) always leaves some residual effects, even if they are relatively mild.
Maintaining our quality of life post-treatment is always a paramount concern. I was adamant about that - and my AN was almost 3 times larger than yours and required both surgery and radiation. However, I came through the experience with my quality of life pretty well intact. Unfortunately, my hearing in the AN-affected ear was lost prior to my diagnosis and is not going to be restored. You are fortunate to have an AN diagnosis while the tumor is still fairly small and your hearing is usable.
Please understand that forums such as this will have a wide variety of AN patients from around the nation and even the world, posting messages. Occasionally some of those folks will suffer from severe post-op complications. This forum allows them to vent, seek solutions and to just have an understanding 'audience' that can personally relate to their suffering, concerns, fears and frustrations. The popular cliché is 'we're all different', and it remains valid. AN patients - men and women - come in all sizes, ages, nationalities and economic backgrounds. Some undergo surgery, some radiation, some both. Yes, some have complications but some come through their AN experience relatively unscathed. There is no 'typical' AN patient.
The best you can do is to become educated, learn about all of your options, go slowly - don't allow any doctor to 'push' you into a specific treatment - and make an informed decision as to how you'll address this medical problem. We're here to help in whatever way we can. I wish you all the best and hope you'll find the answers you seek, soon. :)
Jim
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Thanks to everyone so far that have posted. I tried to make it not as big a deal as it was, but my wife is devastated. She feels somewhat helpless. She is concerned about my health and safety.
Those of you that went through radiation or FSR, did you still lose your hearing on the AN side? Also, was it successful in killing the AN?
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hi,
I was told I had a AN 1.2cm in May and under went Radiation in July. I had 3 low dose treatments times 2 weeks. Its been almost 2 month's since my first treatment. So far, things are good, I sometimes have balance issues ( maybe 2-3 times a month ) an occasional headache that Tylenol takes care of. I have a follow with the Dr. in Oct. and another MRI in December. I hope this thing is dead.
I remember first being told I had a AN. I was scared, depressed and didn't know what to do. I thought my life was coming to a end. The people here are great and have helped me alot. Now, I have come to a to realize, that, this AN is now apart of my life and will be with for for years to come. Stay strong and let us know how things go for you.
Mark
Delaware, OH
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Another person saying that what you and your wife are feeling is normal. AN's are usually non-life threatening. You have time to research your treatment and the outcomes are mostly positive.
Yes there is a lot of negative information on the web but remember that a lot of people who have had good outcomes don't post a lot. Although there are quite a few of us here that are "old-timers" with good outcomes. And I'm not old, only 39, surgery was 3 years ago.
Read a lot, get information from the ANA, ask the doctors lots of questions! A good doctor will be patient with all of your questions, no matter how trivial they may seem. My doctors encouraged questions, any time.
Stay strong....and welcome to our elite club. :)
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I had 25 treatments FSR in Nov-Dec 2005. My 18 month MRI showed it 2mm smaller. I did loose my hearing on AN side 5 months post treatment. But thats little to pay for stopping a tumor.. There are many options available to you including to wait and watch at least for awhile. Although you both are feeling overwhelmed, know that this forum is a wealth of information. I wish I had found it before my treatment. I would have wait and watched for a little bit. Get consults from numerous doctors until you feel comfortable with one and their treatment.
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waypoint -
welcome to the world of ANs! I'm surprised that the doc said your AN is large. Mine was originally 1.5 cm and I was told it was medium. The key to treating your AN is two-fold - #1 be informed and #2 find a doctor with lots of experience. As someone has probably already suggested, if you haven't already, contact the ANA and request information - it's easy to understand and extremely helpful, plus it will explain all your options to you.
I'm older than you (45, soon to be 46) and had retrosigmoid surgery on 5/31/07, and I'm alive and kicking - so tell your wife not to worry :)
There is life after an AN - sometimes it's a little different, but it's life nonetheless.
Good luck,
Jan
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Hi Waypoint,
You have been given lots of good information. About the only thing that I can add at this point is to pray about your situation. Ask God to help you make the right decision. We are behind you 100% and will help you with whichever treatment you decide on.
I had surgery 2 years ago at the age of 46 and retained 90% of my hearing. Other than some tinnitus (ringing in my ear) life is back to normal. If I can help in anyway, just send me a personal email. I wish you the best! Ann
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I too am a firm believer in prayer. When I was first diagnosed and after getting over the shock of being told I have a tumor, I felt blessed that it wasn't cancer I would be dealing with. Then I found this forum for which I will forever be thankful for. After finding out recently that the tumor had grown, unfortunately I was dealing with other major life stressors and freaked out for a few weeks. With support from friends, family and of course everyone on this forum (whether they knew it or not), I've calmed down again and am back to methodically researching what will be the best for me. When first diagnosed, I strongly leaned toward surgery. However, since that time I'm now leaning toward CK. But like everyone has said, there are many options and you just have to find what is best for you. I'm still fairly new to this forum but find something new and informative every time I get on. So take a deep breath and take your time reading and researching.
Sandra
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Waypoint,
In answer to your question:
Those of you that went through radiation or FSR, did you still lose your hearing on the AN side? Also, was it successful in killing the AN?
My story is on the CK patient support group web site at http://www.cyberknifesupport.org/mark.html and that might be helpful for you. Going into my 6 year MRI in November my hearing has been unchanged since treatment and the AN is roughly 25% smaller and looking pretty dead according to my doctor.
Mark
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Hi Waypoint,
Welcome to our little club and so sorry you have to join us. But...as you've seen there are a lot of great people on here who are ready and willing to answer questions and to offer support in this unexpected journey you are about to take.
I had Gamma Knife and it is killing my AN. This is not a fractionated procedure like some are such as CyberKnife, but a one time dose and it involves a headframe that holds your head still. Not entirely pleasant, but they give ya good drugs! Mine is a 2 cm tumor (I really hate that word!) and I was told it was medium sized. My hearing went fast, so hearing preservation wasn't much of an issue, although I do still have some hearing in my AN ear. It has taken awhile to get used to the symptoms that I have been left with, such as the hearing loss, tinnitus, and trigeminal nerve problems which means that I have facial numbness on my AN side. Not debilitating, but certainly annoying, to say the least. We all have something...mostly some degree of hearing loss and often tinnitus.
I wish you the best of luck in your treatment and eventual recovery. I know we have some Texas people on this forum and I'm sure they will chime in soon.
Kindest regards,
Sue in Vancouver USA
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Prayer is good, whether you personally believe in it or not. I asked everyone I know, and they asked others who I don't know, to pray. Never underestimate the power of prayer.
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This is my first post. While I hate the fact that I am here, I am happy to have found this place.
My experience started about a month ago when I suddenly lost hearing in my left ear and suffering from the ringing. Steriods from the ENT doctor brought back the hearing but the ringing he said would take longer. He ordered an MRI to be sure. Well, the MRI revealed a what they termed "large" 1.4cm acousitc neuroma on the 8th intercranial. At 36yrs old. This was alot to take in last Tuesday. Now that I have had a week to think about it, I should have recognized the signs. I occasionally get mild headeaches, and my wife has gotten use to carrying advil in her purse just from me. The specialist, Dr. James S. Toung, M.D. with Texas ENT, has referred me to another specialist at the Texas Medical Center. Doctor C.Y. Joseph Chang, MD FACS. Is anyone here from Houston. I would love to hear who you went with and your outcome. My doctors appointment is Thursday morning to discuss the AN and go over options. My goal or expectations are 1. remove/kill tumor, 2.maintain quality of life (2a. no facial or nerve damage, 2b. perserve hearing in left ear.)
At this point, I am so overwhelmed. The internete has been a wealth of information, but not always good information. It seems that every approach has complications and everywhere I read on the internet people have problems. I am trying to read as much as possible now that I have found this site. My insurance has been a problem for me. For that I am thankful. I guess I just need a little direction or guidance. Specially from anyone that has experience local in Houston. Thanks.
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Hey Waypoint,
My name is Clifton and I live in San Antonio,Texas. I know a couple of people on this board that live alot closer to you that could offer you some excellent advice if they haven't already.
I experienced the exact same symptoms as you described, and visited a local ENT and had some MRIs done and thats when we found it.
Mines the same size as yours.
We decided that the best route for me was the "trans-labrynth" or "trans-lab" approach. Due to the fact that mine is already pressing against the brain stem radiation was not an option, and neither was watching or waiting because im 21 years old.
My surgery date is sept 14th but it seems like yesterday being in your shoes.
I wish you the best of luck and take a lot of time researching your doctors and options.
If you need anything PM me.
thank you
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Waypoint- I know a woman in Houston who had Gamma Knife over 3 years ago- I know her from a smaller group that I was on. She does not post on the ANA site. If you send me a personal Personal message I can give you her e-mail address. It may help you in making a decision based on her experience and who she had her treatment with in Houston. Sorry you had too join our group here. Best Regards_Ron.
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Hi Waypoint
Welcome to the club but sorry that you had to join. You have had some informative replies already and all I can add is the fact that
There is life after AN . After the initial shock you will realise that you have many options of treatment including GK which was my choice . I am now over 28 months post GK and apart from tinnitus and some hearing loss I am doing fine . My last MRI showed that the AN was shrinking which made me very happy about my choice . I wish you good luck with making your choice .
Regards Kat
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Waypoint,
You are very lucky that your hearing bounced back. Two months ago I could hear perfectly, woke up one morning and my left side was just about gone. After two weeks of Prednisone and getting an MRI, my hearing did not return. Upon my return visit to my ENT, I found out I had acoustic neuroma...........what the heck is that??? she goes on to say that I have bilateral acoustic neuromas (both are 1CM) and breifly touched on NF2. Since then the hearing on my right side has gone way down, I can bearly understand phone calls now, balance has now become an issue as well as Tinittus on the right side. I go back tomorrow with the MRI of my spine for possible NF2 (I keep telling myself I'm not NF2, but I know better) stuff going on. I was scheduled for surgery for the left side in the 2nd week of October, we may have to go to plan B now, don't know what that is yet, will find out tomorrow.
This is just my opinion, I think alot of people get treatment and turn just fine and go on their way, where as the ones that have had difficulties kind of vent their feelings here. I'm no expert but I sure have learned alot in the last seven weeks and was able to consult with my Dr. and understand exactly what he was talking about................learned most of it on this board. I know it is hard but keep your chin up, as a buddy of mine who had his left leg amputated in the spring told me............there are worse things, me and you however will survive..........he is right!
John
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Waypoint,
First, let me preface by saying welcome. As you can see, as already demonstrated, we are all here to help in any way we can... we give good shoulder... we give our good ears... we give opinions and suggestions... but, most of all.... we give the best support we can. There truly is nothing more I can add to what has already been noted, but know that we truly do understand as we have been in your shoes... and we're doing as terrific as we can. :) Please hang in there. Know you are in thoughts and we are here to cheer you on during this journey...
We're glad you found us.
Phyl
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Well, I just got back from meeting with Dr. Joseph Chang here at the Texas Medical Center in Houston. Wife went with me. She not going to let me out of her site. Actually, I'm glad she went. We both are going in on this with eyes wide open and it does make me feel better that she is there with me.
The diagnosis is a little worse than I was lead to believe. The written results from the MRI scan indicated that the AN was 1.4cm Dr. Chang determined that it was actually 2.2cm x 1.7cm x 1.5cm or something very close. All I remember was 2.2cm. Inside, it felt like a lead balloon. That wasn't 1.4cm He said it did have a tail or extension and the MRI person probably just measure the roundness area.
He said that radiation wasn't really an option, because of its size and my age, but it was my choice. The long term successfulness of radiation isn't yet known an regrowth is possible. He did say something that hit home with me. The first decision is usually your best chance at eliminating AN. If they have to go back 10yrs from now it will be more dicey. He also said that while I have my hearing now, there isn't much of a possibility that it will be saved base on where it is.
So my options are TransLab or Retrosigmoid. Both approaches carry the same equivalent risk. With Translab I'm sure to lose my hearing. With Retro, his said that the chances of hearing preservation is in the single digit %. He said i had a 70%-90% chance of no damage to the facial nerve. The risk was the same either way I go.
More to come tonight. Thanks.
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Waypoint,
Welcome to the first day of your AN journey and resulting flood of information, both depressing, uplifting and contradictory. I don't know if you've had an opportunity to read my story, but I think my experience is pretty representative the path you've started on, as well as of everyone here, regardless of what treatment decision they ultimately made. The information you got today is something for you to consider, but also to challenge and seek out additional consults from experienced practioners. By the way, good for you to take your wife along. Mine went everywhere with me and having the second set of ears to write down information is invaluable. It is so easy to go into semi shock when you hear some things that it's easy to miss some critical stuff in the consult.
I have heard some other folks discuss Dr. joseph Chang in Houston in the past and I'm willing to venture a guess that he is a otolaryngologist, which means his bread and butter way of treating AN patients is surgery. If that's not the case, I'm confused because his information on radiosurgery is so poor it would be hard to believe he actually practices it. One suggestion I would make is to go to the "ask the doctors" section of the CK patient support web site and paste your post for Dr. Medbery and Spunberg to comment on.
Now, I'm not a doctor , but I did stay in a Marriott Courtyard last night ( which I think is better than a holiday Inn express ;)), so I'll offer my perspective on some of what you were told.
He said that radiation wasn't really an option, because of its size and my age, but it was my choice. Wrong - my AN was around 2.0x1.9x1.7 so it wasn't that significantly different from yours. The rule of thumb is that the ceiling for AN's being treated by radiosurgery is around 3 cm. I was 44 when I was treated and while 36 is younger, I don't think you would find any radiosurgeon that would see you being at any increased risk for anything becuase of your age.
The long term successfulness of radiation isn't yet known an regrowth is possible Not buying that one either. GK has been used on AN's since 1969 worldwide and since the late 80's in the US. That's about 40 and 20 years respectively and the studies continue to show a failure to control or regrowth rate of 2-3%. Most peer reviewed studies on surgery display figures between 5-10%. That covers a wide range of surgeon abilities and the extremely experienced ones like HEI are certainly closer to the 5 or better figure, but that puts them in the same ball park as the radiosurgery studies.
The first decision is usually your best chance at eliminating AN. If they have to go back 10yrs from now it will be more dicey I think I understand this one, but based on the stats above, going back could happen in either case by some percentage odds and assuming the AN can't be zapped again, then surgery will have complications with scar tissue either way.
So my options are TransLab or Retrosigmoid. Both approaches carry the same equivalent risk. With Translab I'm sure to lose my hearing. With Retro, his said that the chances of hearing preservation is in the single digit %. He said i had a 70%-90% chance of no damage to the facial nerve. The risk was the same either way I go. yes, given the size of your AN and if you choose surgery, then those would be the two approaches used. Yes, translab would sacrifice hearing, but typically allows better access to the facial nerve than the retro approach, which also has a higher incidence of headaches following surgery. I don't remember you saying what your current hearing level is but I was given a 10-20% probability of saving mine with retro so his single digit number is pretty good. AN hearing preservation decreases with size in surgery, but size is less of a factor with radiosurgery. In terms of the facial nerve, I think the better description is "function", i.e. how does it work. Many surgeons grade their performance according to observable damage, most patients I know grade it by how it works after treatment. 70-90% is quite a range to almost be meaningless to me, but based on what I remember being quoted for a 2 cm, I would say the 70-75% range would be about right. The comparative figure for radiosurgery is around 98-99%, so even if hearing is not an issue and the facial nerve , as it should be, is the priority, that is something else to consider.
The long and short of the above is that you have gotten the first pieces of information to solve your personal puzzle, but I think you need to seek out some more to make sure your comfortable with your decision. Both options in the hands of expereinced people can have good outcomes and everybody I know on this site will be very supportive of whatever decision you make. I do think it is imperative to have doctors provide good, honest , accurate information to patients on both options and I get "miffed" when I see just flat out erroneous or biased info as this doctor gave you.
Good luck
Mark
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Oh THANK YOU Mark for stepping up to the plate! I suspect this is going to be an ongoing battle for years and years and years - surgical vs. radiosurgery....but it would be NICE if more doctors gave a balanced and informed options for AN patients. Regrowth is possible after microsurgery, too.
It's a horrible position to be in when you have to question a doctor. But you gotta look out for your own best interests and what you want to do. Get a second opinion and a third if necessary to find out ALL the options open to you, Waypoint. It's your AN, your head, your recovery, your choice. In the end you may choose surgery over Ck/Gk...but as long as you are comfortable with that and that's what you want to do, then fine. But Mark is right - your doctor is not as informed as he should be regarding radiosurgical procedures.
Whew...I feel better!! ;D
Sue in Vancouver USA
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Thanks Sue, but you know me, I have a hard time not jumping on docs who give patients misleading info of any type >:( ;)
Mark
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I'll try to echo Mark's response a little more briefly. :)
"He said that radiation wasn't really an option, because of its size and my age, but it was my choice."
Also known as the "radiation is for old people and sick people" theory, which was the consensus back in 1991. Since then, there has been quite a bit of development in radiation, and it is now considered by many doctors to be the first choice for treating a range of small and medium ANs.
"The long term successfulness of radiation isn't yet known and regrowth is possible."
There are now good studies of 10 and 20 year control rates with GK and CK radiation. Regrowth is about equally possible with either surgery or radiation, with radiation down around the 2% range. The best control rates for surgery are with trans-lab; the other procedures have higher regrowth rates.
"The first decision is usually your best chance at eliminating AN. If they have to go back 10 yrs from now it will be more dicey."
That is true, whether you do radiation or surgery first. The tumors most likely to grow back are the more agressive ones, which will be more difficult to treat the second time because they are aggressive and infiltrate and get sticky, not because of how they were treated the first time.
And now some links, pasted from a post of mine a month ago. Some of the comparison data is pretty dated now, but it is a starting point.
U. of Pittsburg, on radiation and comparisons to surgery:
http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
House Clinic, on surgery, with some comparisions to radiation:
http://www.houseearclinic.com/pro_acousticneuroma.htm
Cyberknife Patient Support Group:
http://www.cyberknifesupport.org/
CyberKnife at Seton Hospital in Austin, TX:
http://www.seton.net/medical_services_and_programs/neurosciences/brain_and_spine_center/cyberknife__stereotactic_radio_surgery/
GammaKnife in Houston, TX:
http://www.westhoustongamma.com/
AN Surgery at Baylor College of Medicine (nice set of 8 pics showing the steps of a trans-lab surgery):
http://www.bcm.edu/oto/cfbd/ansurgbw.html#
Okay, not so brief. :)
If you take a little more time and gather more information, you will know when to make your choice, and we will be here to support you.
Steve
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waypoint -
as others have said, it's important to talk to docs who know the pros and cons of both radiation and surgery. I opted for surgery, was very comfortable with my decision prior to surgery, and I continue to be comfortable with it after surgery. Surgery was my choice, but I don't fault others for choosing radiation, or choosing to watch-and-wait if that is a possiblility for them.
IMO, you should get all the information you can, talk to other doctors if you think it's necessary, and then make your decision based on your comfort level. No one can say what is right for you, except you.
jan