ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Phillies on April 30, 2011, 09:19:36 am
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Hello,
I was just diagnosted with a 2.6 cm x 2.5cm x 2.5cm AN on my right side. I have hearing loss and ear ringing when there is noise but zero balance issues. I'm still able to talk on the phone with my bad ear but it gets hard when there is alot of background noise. I also get some sound distortion in my bad ear with certain sounds. I have my consultation for the Gamma Knife in a little over a week and a consultation with a brain dr in a few weeks as well. From what I was told on the phone I am a candidate for the gamma treatment. From doing my research I think I've decided if the biggest issue I have is just the ear ringing, then surgery is probably not my best best.
Anyway, I been reading this boards, and maybe reading them wayyy too much... All i seem to find on here are people talking about how their hearing got worse after Gamma Knife. I have functional hearing in my bad ear right now and I would hate to see my hearing get worse becasue of the gamma knife... But perhaps the amount of people who have further hearing loss at gamma is small? I'm guessing people are more prone to post on these boards when they have issues rather than to post success stories....
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I didn't choose radiation myself - I chose surgery - but oftentimes after GK the tumor swells (before it dies) and that leads to decreased hearing. This is not always permanent.
As for the people who frequent the Forum, your suspicions are somewhat correct. We have lots of people who only post when they are trying to make their treatment decision, when they first finish treatment, or when they encounter a problem. However, over the years more and more of us with success stories stick around.
The phrase "success stories" is pretty subjective. Lots of people that some might feel have "issues" are huge successes to us. Prime example in my mind is Kaybo. She's been through a lot, but in my book she's one of the biggest success stories on the Forum.
Jan
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Phillies
Your doctor should advise you on this matter. I have Cybercafe radiation last November. Before they even started they explained that there is a good chance at losing some hearing but afterwards there is an 80-85% chance of have serviceable hearing on the AN side. They were correct I have lost some hearing on my AN side but with the help of a hearing aid, it is not an issue.
Good luck
TJ
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Phillies .....
Welcome to this forum! I did not have radiation, but I have a very good friend who did for her AN. Before she was diagnosed, she had a brief period of some hearing loss. A course of steroids brought it back. A couple of months later she had gamma knife (over a year ago now). She never has experienced had any further hearing issues, even with the post-treatment swelling. One year MRI showed some darkening of the tumor and no additional growth. In other words, she is a huge success story!
Best wishes.
Clarice
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Thanks for the info. These are questions I will be asking the doctors in the next few weeks but until then I figured I could ask on here. These boards haved been very informative and somewhat destructive too. I get involved for hours reading these boards, hearing all these horror stories and I get depressed. I start thinking that gamma knife is worse than doing nothing... But once I get off the boards, get back to doing my regular routine I really don't feel too bad. So I'm going to force myself from visiting here too often.... :)
But thanks again for the info :)
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You are too kind to me, Jan - thanks for your sweet words. I'm just a girl trying to do the best I can with what God gave me. Lemons to lemonade & all that!
K ;D
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Hi, Phillies - and welcome. Although I'm sorry you've been diagnosed with an AN, I'm glad you've discovered the ANA discussion forums.
You're now in the midst of one of the most difficult parts of the AN journey. Choosing a treatment. All have inherent risks of some kind. There is no 'magic bullet'. Unfortunately, hearing loss can occur with the Gamma Knife treatment. It can also occur with other radiation approaches and definitely with microsurgery. However, I hasten to add that hearing loss is not necessarily a certain outcome with any AN-related procedure and the level of loss (if any) can - and does - vary with each AN patient. We realize that every newly-diagnosed AN patients seeks the best possible treatment with the best chance of a complication-free outcome. I did. The reality is that this kind of tumor, although benign, is in a difficult place and every procedure has it's risks. The uncertainty can be frustrating but we all have to deal with it. Performing the research needed to arrive a treatment decision/doctor/facility that you're comfortable with, as you've noted, can be arduous and eventually, depressing. It is also unavoidable.
The key point to keep in mind is that everyone is unique and one (or ten) AN cases that ended with complications for the patient are not automatically a template for every AN patient. Many of us had excellent outcomes to AN surgery and/or radiation. I'm just one of them. Like you, immediately following my diagnosis I jumped on the internet and found this website, among others. I was a bit dismayed with the posts relating sometimes painful, debilitating and/or intractable problems some AN patients experienced, post-op or post radiation. I was determined to choose the 'best' doctor I could find and to avoid these sorts of problems. I also prayed a lot about my situation. Long story short: I found an excellent AN neurosurgeon, underwent AN 'debulking' surgery (including severing the tumor's blood supply) and suffered no concomitant problems. 90 days later, as planned, I underwent 26 FSR (radiation) treatments to destroy the remaining tumor's DNA. These were relatively uneventful and successful (the tumor 'died'). Yes, I'm a 'success story' and so are many others who take the time and make the effort to post on these forums. However, these forums are mainly here to advise, inform and most of all, support AN patients. Obviously, those experiencing problems related to AN treatment are going to be well represented and we're glad to help them in whatever way we can. With that caveat, I hope you'll continue to pursue the website and the message boards, not avoid them. Feel free to ask any question you may have. These are active forums and you'll usually receive a reply within a short time. We're here to help. I hope we can help you. Please allow us to try - and thanks for registering and posting.
Jim
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Thanks for the nice reply. I do feel better now :) I enjoyed the nice weather today and I was even able to forgoet about my ear ringing for some periods of time. Which for me, is my worst issue as of right now. I'll check these boards from time to time as I proGress with my treatment plan but I wil be sure I no longer go crazy reading every horror story I can find on here. It doesn't do me any good. But hopefully since my hearing isn't too terrible right now that will give me a better chance of having somewhat decent hearing after everything is said and done.
Thanks,
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I was also diagnosed (accidental find) with almost same size AN as yours 2+ years ago. Still good hearing, no balance or other noticeable issue except occasional tinnitus (when tired or stressed).
I consulted 3 well known neuro surgeons in New York. All 3 recommended, if nothing bothers, then wait-and-watch but GK option was no-no (because of size of AN). 2 of 3 surgeons did both GK & micro-surgery.
All 3 said micro-surgery is the option(when and if) & one surgeon hinted FSR (reason not enough data). I take "Noni & Goji fruit extract" capsules as vitamins supplement and walking 2-3 miles daily as a routine.
Last MRI check-up (8+ months ago) actually showed AN to be 2.5cm x2.5cmX2.4cm size & I intend to take next MRI in Aug. 2011 (after 1 year) .
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So a 2.5cm x2.5cmX2.4cm tumor was too big for GK? My size is very similiar and I have my GK consultaion next Monday. From the quick phone call I had with the secretary she said that my MRI was looked over and I'm apparently good for the GK but now you got me nervous. Why did the doctors say your size is too big for GK??
This is why I try not to read these boards too much... >:(
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Like Jim said "All (procedures) have inherent risks of some kind. There is no 'magic bullet'.
Doctors said because of location, I have more chances of developing "hydrophilus" and other symptoms like hearing loss. Your AN location might be different or better located for GK.
Either way, wishing you good luck and better decision.
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Thank you :)
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Phillies -
most docs who do radiation will radiate an AN up to 3 cms, but there have been a few reports on the Forum of docs who will radiate an AN greater than 3 cms.
As others have mentioned, location is also a factor when considering radiation.
Jan
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Location is also very important in addition to size.
Regarding hearing preservation, my doctors had warned me that I would lose my hearing after GK and it did indeed happen. At least it happened so gradually that it didn't really bother me.
My observation though from the forum is that many people retained hearing post radiation, GK or CK when they had smaller tumors. If hearing preservation is very important for you fractionated treatments like CK may be more beneficial.
Marianna
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Maybe it's because I'm finishing up my 3 weeks of steroids but my hearing has greatly improved the past two days. I was even talking on the phone using my AN ear and was able hear even in a noisy environment. Reading all these posts makes me feel like the treatments are almost as bad as not doing nothing. My hearing in my AN side is nowhere near perfect but right now it's not that bad from what I can tell especially compared to what is was when I first learned of my AN. It seems like a real shame that any treatment of my AN might just make things worse :( I see the gamma knife dr on Monday
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Reading all these posts makes me feel like the treatments are almost as bad as not doing nothing. My hearing in my AN side is nowhere near perfect but right now it's not that bad from what I can tell especially compared to what is was when I first learned of my AN. It seems like a real shame that any treatment of my AN might just make things worse.
Phillies ~
Although treatment can cause problems due to the critical location of the acoustic neuroma, doing nothing, as you probably know, is not a valid option. ANs almost always grow and when they do, problems increase. Even though an acoustic neuroma is benign (non-cancerous) if left untreated, the AN could, in time, seriously impact the brainstem and, eventually, lead to death. The fact that radiation (surgery, too) often has the effect of diminishing or removing your unilateral hearing is one of those unfortunate complications that make choosing a treatment so difficult. The urge to ignore the whole thing is sometimes strong but, again, not realistic. The harsh reality is that ANs are difficult tumors to address, whether you chose radiation or surgery (I opted for both). The good news is that the success rate of GK is very high. I wish you a successful consult next week. Please let us know how it goes. Thanks.
Jim
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Location is also very important in addition to size.
Regarding hearing preservation, my doctors had warned me that I would lose my hearing after GK and it did indeed happen. At least it happened so gradually that it didn't really bother me.
My observation though from the forum is that many people retained hearing post radiation, GK or CK when they had smaller tumors. If hearing preservation is very important for you fractionated treatments like CK may be more beneficial.
Marianna
Could you elaborate on how fractionated CK treatment may be better for my hearing? Although I don't think I have any cyberknife places that are within easy driving distance.
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Could you elaborate on how fractionated CK treatment may be better for my hearing? Although I don't think I have any cyberknife places that are within easy driving distance.
Hi Phillies:
I'm not sure where you are located (in PA?) but have confirmed that CK is also offered at UPMC. Since I don't know where you are located, you can check for CK facilities at www.cyberknife.com
To answer your question... typically, GK is done at one time vs CK which is usually "fractionated" over a timeframe between 3-5 days, thus, the dosage is lower each day, helping to minimize potential collateral damage to the surrounding structures.
I can report that for me, whereas I had CK done over 5 days, I have maintained 100% of my serviceable hearing (what my hearing was at time of treatment) from what it was 5 yrs ago at time of treatment. I can also report that Beth Israel Deaconess in Boston has published a paper noting 100% hearing preservation (for serviceable hearing at time of treatment) for their skull base/AN patients. I have a copy of the paper and awaiting final word that is available to share.
Hope this helps.
Phyl
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Wow. So it looks like fractionlized CK might indeed increase my chances of keeping my hearing. And just when I was certain I was going for the gamma knife. I did a search on the cyber knife page and found a few places in North NJ where I live. Although I'm not sure how much they deal with AN's. Closest one to my house is at a cancer center for example. Wonder if it would matter much which one I tried going to
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One of the goals of "fractionating" (ie: CK, FSR, Novalis, Trilogy) is hearing preservation.
If you read the CK site, you will see that CK is used for many different ailments, many of them malignant growths (ie: prostate cancer, now used for breast cancer, etc). So, they will note their use for cancer treatments but if you look at it carefully, you will also see it being used for benign issues such as AVM's, meningiomas and yes, AN's.
Experience is key. Many AN'ers here on these forums have had CK done as well as FSR, Trilogy, etc. Leave no stone unturned in doing your homework as you want to be able to make the best, well-informed decision you can for you and your particular/unique AN journey.
Please remember that all treatment options (surgical and radio) come with risks (as with any medical treatment option for any ailment) and "individual results may vary....." Homework is key and it looks like you are doing all the right things to help achieve your goal. Hang in there!
Phyl
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Thanks,
I guess I'm looking for a cyber knife center that just deals with AN's but that's probably not something thatdoes not exist. But I wonder, regardless to how good your doctors are or how many AN's they have treated, since the machine is doing the work rather than a doctor's hands in brain surgery perhaps is doesn't matter as much where I go for gamma or cyber knife?
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But I wonder, regardless to how good your doctors are or how many AN's they have treated, since the machine is doing the work rather than a doctor's hands in brain surgery perhaps is doesn't matter as much where I go for gamma or cyber knife?
I didn't have GK or CK - I opted for surgery - but I'm not so sure I agree with this reasoning.
I think the machine and the doctor are equally important, but I'd imagine that the doc would be very particular about the machine that he decides to work with. To that end, I think if you find a good, experienced doc the machine he uses will meet his standards.
Just my two cents,
Jan
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Well my personal experience indicates that is true. I had Gamma Knife procedure performed at Methodist Hospital in Omaha NE approximately 2 years ago. Since that time my hearing definately has deteriorated. It has gotten bad enough that I am preparing to investigate any and all additional options. Any suggestions would be welcomed. The ringing in my ear, and the balance issues are constant reminders of the condition. ??? Good luck!
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Sorry to hear of your problems. Have you spoken to the doctors who did your radiation treatment?