ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: amysue on February 18, 2010, 04:52:07 pm
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Hi everybody,
My name is Amy, I am 34 years old and I was diagnosed with a 1.6cm AN on 12/16/09 on the right side. I have almost perfect hearing in both ears and no facial problems. My only symptoms have been dizziness and balance issues which have occurred everyday for the past 6 months. I am scheduled for GK next Friday, the 26th. My doctor decided that to save my hearing, my best option would be GK. He said that the possibility of me losing my hearing or having facial paralysis from GK is very low. My question is, has anybody experienced hearing loss with GK with a tumor my size who had perfect hearing before? What about facial paralysis? I was also reading that once you have GK, if I needed to go in later to have surgery, there is a 100% chance of permanent facial paralysis and most likely hearing loss as well. I'm almost wondering if I shouldn't just have surgery now to get rid of the thing and lose my hearing on the right side. Will the Dr's be able to tell, once I have the halo screwed on and the MRI done, whether there will be hearing loss or facial paralysis depending on where the tumor is located since that MRI is so much more detailed? I just want to make the right decision. Any comments or suggestions you have would be greatly appreciated.
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amysue -
I had both options - radiation and surgery - but ultimately chose surgery for various reasons.
However, that's not important here. What IS important is that you choose what is best for YOU - based on your conversations with your doctor - or doctors; and based on the research you have done.
If you haven't yet, I recommend you contact the ANA for their informational literature - you'll find it very helpful.
Best,
Jan
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Amysue,
I'll chime in here. Sorry you have an AN.
I just had GK myself recently and can tell you what I was told and what I have learned. First, if you have GK scheduled there should have been at least a brief consultation on hearing and facial issues and what to expect. I would contact your Doc and have a conversation, I think you will find them more than willing to go over everything with you.
This is what I was told and what information I have found. There are no immediate complications after GK. Your hearing should be the same after the procedure. In the long term of course , no one could guarantee anything. The risk of facial Paralysis is less than one percent. It seems some Doctors tell their patients that once GK is done , it would be very hard and difficult to remove the tumor at a later time. This is simply false. First of all you are probably looking at 98% chance you will never have to do anything again. If you ever did have to have surgery, No one could ever be able to predict how hard or easy it would be to remove regardless.
As far as your balance, You have already been identified as a candidate for GK. You would have to talk with your Docs about correcting those problems. Usually the other balance functions in your body take over. This may take time and or therapy. Usually, if you have surgery your balance nerve goes with the tumor forcing the rest of the body to take over. With GK, it might take longer as there is still some signal getting through.
I hope this helps you out and I'm sure there will be some more posts and opinions coming your way. Your lucky you have been dignosed early and have only a few complications. Was it your balance issues that got you diagnosed? I was dizzy for years and never diagnosed until my hearing was pretty much history. Good luck to you.
Bryan
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Hi Amy and welcome.... to me, you ask the $2M question for those of us with small enough AN's that have options as to which treatment option to take. Like Jan, you and many others..... I did my homework for surgery and radiation.... and for my own personal reasons, ruled out surgery... then, had to determine which radio treatment option would be best for me. Like you, I had most of the hearing before my radio treatment and like you, wanted to do what I could to help save it. After doing my add'l homework, I decided on Cyberknife (CK) in fractionated doses (done over 5 days vs. 1 day GK or CK). In my case, my symptoms, pre-radio were minor and very tolerable. I had CK done... and can report that now... almost 4 years later... I have retained the same level of hearing I had at the time of my radio treatment. I have had no facial or enhanced balance issues since my treatment and can report, in my situation, I am doing fine.
so, for me and my decision... it has paid off. We note around here that "individual results may vary" and we always try to keep that in mind. I'm glad that Bryan has shared his recent GK journey with you as it certainly helps to give insight into what may/may not occur. There are many other GK post-treatment folks here. I will reference "Sue" (Vancouver Sue, as we call her around here) as she had GK about the same time as me (almost 4 years ago) and can give a good account of her post-GK journey as well.
You will also read many stories here about post-surgery patients. I would recommend "lurking" the "Microsurgical" forum as there is also some terrific insight there in many of the discussions.
I'm with Jan in recommending contact directly to the ANA for their informational package. It's a wealth of info that they will mail to you and definately worth a peek.
Again, welcome... we're here to help as best as we can and to cheer you on, regardless of what your decision may be. Go with your gut... they are usually on the money for what will be best for you and your particular situation.
Phyl
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I didn't mention Cyber Knife in my previous post not on purpose, but that I had GK and I know there are many others who could comment on CK. Choosing between the two. I am not entering that debate. IMO they are both great choices.
Amysue, if you could tell us where you are having your procedure done and the doctors involved maybe someone could give you their experience at that facility.
Bryan
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I didn't mention Cyber Knife in my previous post not on purpose, but that I had GK and I know there are many others who could comment on CK. Choosing between the two. I am not entering that debate. IMO they are both great choices.
Hey Bryan, you stayed on topic :) for 'GK vs Surgery' and your story is so very appreciated! :) You are certainly right as GK, CK and many other forms of radio are very viable treatment options for AN's.....Thank you for sharing the GK journey and you know I'm sending wellness wishes to ya!
Phyl
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Hi Bryan, yes it was my balance issues that got me diagnosed. I just hadn't been feeling well for several months...I thought it was vertigo and then I started running into things and just being clumsy which isn't like me, so I decided to see an ear, nose and throat specialist thinking I had an ear infection or something. My neurosurgeon also said that my other side should start taking over for dizziness caused by the tumor but that hasn't happened yet and it's been about a year. I'm not really expecting that to go away with GK.
Thank you so much for your input. I appreciate it. I am planning on going in on the 26th still.
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Hi Amy,
I am chiming in late - I would like to wish you good luck with your procedure.
There is a lot of information here on balance issues, many people have found that vestibular therapy helps enormously. As far as GK complications, facial problems are very rare and even if they appear they eventually resolve. On the issue of hearing, it is very rare to notice a difference right after treatment. However a decline post treatment is very possible. Usually the better your hearing going in, the better your chances of *retaining some usable hearing* - and probably this is what your doctor meant.
Personally I went into GK with very slight hearing loss, and 100% speech recognition, now after almost 2 years and two episodes of hearing loss I sit at about 30-60 db PTA (depending on the frequency) and about 80% word recognition.
Lastly, no the doctors cannot "predict" what is going to happen, but they spend a lot of time to devise the best possible treatment plan once they have your CT and MRI scans. This is the reason why there is quite a bit of wait between the time you have your MRI scan and the time of the actual treatment.
Don't worry, everything will go fine. Make sure to get plenty of rest after your treatment is over.
Best wishes,
Marianna
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I like many am having to make this choice. My AN is in a place and of a size that both options are viable. To inform myself I have now met with four Dr.'s (one ENT, two neurosurgeons and one Radio Oncologist) and like an old ad, three out of four doctors recommend the Gamma Knife.
However, all of them agree that there is a very very strong 80% that Gamma Knife will result in hearing loss over the next 5 to 10 years. They also all agree that there is not the long term large case study of the effects of Gamma Knife and admit that it has a risk though small that it will cause brain cancer within 20 years, a kind of brain cancer that is a death sentence.
So my choices are, as i see it open brain surgery with all of the incumbent risks of death, stroke, hearing loss and facial paralysis but at least you know where you are withing a few weeks post op and can only get better, verses being home for dinner with the Gamma Knife and having years of follow up and wondering.
Am I missing something? In other words both suck and the odds mean nothing because it is 100% for you.
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Am I missing something?
I think you are, actually. Call me an optimist if you like, but there is a better way to look at it. Even if you didn't realize it, you have been living with the possibility most of those bad things all your life - we all do.
One out of two hundred people will get brain cancer sometime in their life, whether or not they have an AN, and whether or not they have brain surgery or Gamma Knife. We all take the chance of getting killed in a car accident, every time we drive or ride in a car.
More importantly, these risks have always been true, for you, your family, and your friends. The thing is, we can't live life without taking some risks. So we try to minimize the risk, but we also get on with living. The risks you have mentioned, of stroke or death or brain cancer from AN treatment, are all very small risks, the kind we take every day in order to live at all. In fact AN treatment increases your chances of these things by only a small amount - there is some risk there anyway, and it just goes up a little bit.
Of course you can worry about these small risks if you choose to, but just be sure you don't get hit by a bus while thinking about them at a busy street corner. I think they are just a part of life, and deserve no more worry than all the other little chances we take as we go about living.
Steve
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The risks you have mentioned, of stroke or death or brain cancer from AN treatment, are all very small risks...
Sorry, I am coming to this thread late. I already wrote what follows before I realized that amysue has probably already had GK. But the information might nevertheless be helpful to other watch-and-waiters, so I'll post it:
Amysue, the risk Steve refers to is a fraction of 1% greater than that for the general population. It is deemed statistically insignificant by many doctors. In all the research I've read, there was only one case (out of many thousands) where post-treatment malignancy arose at the site of treatment, and that was back in the days when much higher doses of radiation were used to treat ANs compared to today. Keep in mind that GK has been performed in the U.S. for over 40 years, and still there is only this one case of documented malignancy for radiosurgery (and I'm not sure it was specifically with GK and not some form of FSR radiotherapy: sorry, I can't remember). You will be in your mid-70s forty years from now. The question you should ask yourself is: is the very miniscule potential for serious complications decades from now as a result from getting GK worth the statistically much greater risk of serious complications (facial paralysis, hearing loss and so on) from surgery now when you are in your prime?
Should you need surgery after receiving GK, I highly doubt that your chances of permanent facial paralysis would be 100%. Unless, that is, your chances of permanent facial paralysis without first receiving GK are close to 100%. My tumor was larger than yours before I received CK, and Dr. Chang (my doctor at Stanford) told me there was less than a 1% chance of even temporary facial paralysis. I had no such complications.
You also asked, "Will the Dr's be able to tell, once I have the halo screwed on and the MRI done, whether there will be hearing loss or facial paralysis depending on where the tumor is located since that MRI is so much more detailed?" The short answer is 'no.' No doctor can predict with certainty what the effect of radiation or surgery will be on your hearing and facial nerve. Radiation can irritate or damage the hearing and/or facial nerve by damaging the blood supply to those nerves, whereas surgery can traumatize those nerves even if their anatomical integrity remains intact. All things being equal, however, the chances of preserving hearing and facial-nerve function for a tumor your size are generally much more favorable with radiation treatment than with surgery.
You might find the following thread helpful in your decision-making process (see my post about 1/3 of the way down the page from the top): http://anausa.org/forum/index.php?topic=6670.0
Best wishes,
TW
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Sgerrald thank you for putting some prespective on it. I was having a bad day. But every Dr. I have spoken to has said that hearing loss is almost inevitable over 5 - 10 years with Gamma Knife. That does not seem to be reflected anywhere here. Why?
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Yyzan,
Hearing loss is much more possible with acoustic neuromas. That is something you do have to think about.
There have been studies that show that the average hearing of GK patients goes down over time, and that is what your doctors are probably referring to. Dr. Chang, doing Cyberknife at Stanford, has reported that the actual result is more like a split: one group of patients retain most of their hearing over time, while the other group loses most of it over time. The average of these two groups is a decline over time, but the reality is that one group does well while one group does poorly. (I don't know if it is a 50-50 split). So there is a decent chance that you will retain good hearing for a long time.
I suspect that I will be in the declining group, as my hearing was already down quite a bit before treatment. Nevertheless, I am very happy that I have retained what I have for the time that I have it. Even if you can't get full retention for life, keeping some of your hearing for 5 - 10 years is worth it. Most people would agree in an instant if we were talking about vision; I find it odd that doctors and patients are so much more casual about throwing away 5 to 10 years worth of hearing. "If you are going to lose your hearing in 5 years, you might as well lose it tomorrow?" No, I'll take the five years, thank you.
Steve
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YYZAN
I can totally see why you might be having a bad day after talking to the docs at the GK centre. They for sure don't have the best bed side manner, and they will not hesitate to offer you the worse case scenario. They obviously want to be totally sincere with patients and they are also not trying to sell you anything.
So, first of all on the hearing loss issue. Having an AN makes it almost inevitable that you will experience hearing loss at some point. The question is to what extent, and if you will retain any serviceable hearing. This is why the stats are so confusing. Many scientific publications put hearing retention rates to the 50-75% range, but if you look more carefully, they usually refer to retention of "serviceable" hearing. So when the docs say that hearing loss is inevitable, they don't necessarily mean complete SSD (single-side deafness). I had minimal hearing loss going into treatment, and now almost 2 years post-GK I have some additional loss at various frequencies, with about 80% word recognition. So, I fall in the statistic of "hearing loss", although I still retain serviceable hearing and I can hardly notice the difference. I also agree with Steve's statement on the time frame. I am grateful every day for the hearing that I do have (especially given the nature of my work, which would make it very difficult being SSD) although I am also resigned to the fact that I may have additional loss in the future.
Secondly, the long term issue is of course unsettling for everyone. My experience from reading this forum is that it is never over when you have an AN, no matter what type of treatment you have. It is always one thing or the other, could be fear of recurrence, waiting for facial issues to resolve, seeking treatments for headaches, problems from swelling, etc. etc. Unfortunately this is the nature of our condition. So you have to weigh the risk factors, and chose whatever you feel more appropriate for you. Some will tolerate the uncertainety, because they simply cannot afford to go through surgery or they want to avoid life quality issues at the prime of their age. And some cannot tolerate this waiting game, and they want "the thing out" right away. It is a personal decision and reading this forum will demonstrate both points of view very well.
Marianna
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Very eloquently stated, Marianna. It is sometimes difficult for me to hide my bias towards CK, since it was such a successful treatment for me. But I do recognize that choosing a treatment plan is a very personal matter, a path each person must choose for themselves.
Steve, if you haven't lost that much hearing post-CK, you may very well be in the "hearing-retention" group. I know you know what I'm about to say, so I'll state it for those who don't. A 15dB loss might not even be enough to place the patient in a different class of hearing function; each class covers a range of hearing (from its lowest to highest degree of function). When AN specialists say a patient's hearing has been preserved, it simply means their function remains in the same class it was before treatment -- even if it has diminished somewhat in absolute terms. My hearing has decreased 10-15 dB in a few midrange- and high-frequency bands. Yet Dr. Chang cast me as belonging to the group that will likely retain hearing over the long haul.
I feel the same way as Steve and Marianna (and I suspect many other members of this forum): every year of preserved hearing function is a blessing for me. In my case, surgery would've left me deaf. That was one of the biggest reasons why I chose radiotherapy (CK) instead.
Best wishes to all,
TW
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TW:
As I am new to this, how can you say that surgery would have left you deaf? My ENT is saying that I have a good chance of hearing retention with surgery.
Also, can someone tell me what it is like to function with SSD? I am tempted to stick an earplug in my ear for a day or so to see if I could cope or adjust.
Thank you all again for your information.
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I can't speak to TW's particular case, but yes, there are surgical approaches that help you retain your hearing. Mid-fossa is the approach with the biggest chance, followed by retrosigmoid and translab.
As for being SSD, one of the biggest issues IMO is lack of directionality. You can hear something, but have no idea where it's coming from. For example, if you are standing in a bank of elevators, you'll hear one "ding" to tell you it's coming, but you'll have to spin around in circles and look at the lights to see which one it is ;D
Another issue is someone talking on your deaf side. You can't hear them. You get to the point where you try to position your body so that people are on your "good" side by either picking the "best" spot at the table or by constantly turning your body so your good ear is the one they are speaking into.
Holding a phone to your deaf ear is pointless. Hearing in noisy and crowded rooms isn't workable either.
Everyone adjusts to being SSD differently. Honestly, there are those who adapt just fine and don't have any issues they can't deal with. Then there are those like me who "go down kicking and screaming" - as in I hated being SSD and found it very depressing. The day I did the BAHA demo I realized that a majority of my SSD issues would be solved - and my depression basically flew right out the door.
Aids and implants aren't for everyone, but some of us couldn't exist without them.
Jan
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As I am new to this, how can you say that surgery would have left you deaf? My ENT is saying that I have a good chance of hearing retention with surgery.
Also, can someone tell me what it is like to function with SSD? I am tempted to stick an earplug in my ear for a day or so to see if I could cope or adjust.
YYZAN~
Fortunately, Jan ('leapyrtwins') offered a very good explanation of what SSD is like and why TW might have stated that surgery would have left her (single sided) deaf. I'm sure that TW will soon post her own explanation that will be far more articulate than any I might give so I'll leave that to her. However, I did wish to add my comment that some AN removal surgery approaches, such as the Translabyrinthine approach, necessitate the cutting of the nerves associated with hearing (and balance) on that side of the skull. This surgical approach is most common and supposedly gives the surgeon the best 'view' of the tumor. If a doctor tells his AN patient that 'Translab' surgery is their best option, that patient can be assured that on waking up from the operation, their AN may well be gone but they will definitely have lost the ability to hear in the AN-affected ear.
Jim
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First of all, I haven't had a sex change and the last time I checked I was a guy. ;D I just checked again. Yup, I'm still a guy. ;D
YYZAN, I was speaking specifically about my case and not in general terms when I said surgery would've left me deaf on my AN side. Many people have surgery and don't lose any hearing. In my case, the size and location of my tumor led every one of the neurosurgeons I consulted to tell me there was over a 99% chance that surgical resection would leave me SSD. Even with retrosigmoid approach, this was the predicted outcome.
It was this prognosis and my strongly stated preference for hearing preservation that led every one of the six doctors I consulted, including the highly esteemed Dr. Derald Brackmann (pioneering brain surgeon at HEI), to recommend I have radiosurgery. It turned out to be a great choice for me.
Best wishes,
TW
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Thank you all. Talked to my GP yesterday who told me a horror story about a patient of his who had surgery. I am now more confused than ever. I am going on holiday to the Grenadines tomorrow with my kids and will drink rum lie in the sun and process. I then have two more consults when I get home, one with another surgeon and the second with another ENT.
Then hopefully make a decision I can live with.
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It's good you are getting so many professional opinions, YYZAN. I got six! By the time #6 came back to me, I already knew for certain what form of treatment I wanted. I heartily recommend people with an AN consult as many doctors as they need to (and at least 2!) to get clear for themselves what course they want to take.
The vacay is a good idea, too!
Best wishes,
TW
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Thank you all. Talked to my GP yesterday who told me a horror story about a patient of his who had surgery. I am now more confused than ever. I am going on holiday to the Grenadines tomorrow with my kids and will drink rum lie in the sun and process.
Don't let "horror stories" scare you. Each case is unique and you can't base your outcome on anyone else's. Just make sure you follow the ever important rule of "make sure whoever treats your AN has plenty of experience".
Lots of professional opinions are a good thing, if that's your style. Sometimes it just muddies the water, but you should do what is best for you. Follow your gut and talk to as many doctors as you need to in order to make the decision you are confident in and comfortable with.
The rum and sun sound wonderful. Wish I was on holiday ;D
Jan