ANA Discussion Forum
General Category => AN Issues => Topic started by: yjhollenbeck on June 27, 2009, 12:19:44 pm
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Hello everyone, first off, I've read some posts and you all seem like very nice and suportive people. I have been through a lot the last 2 years (Dad died of cancer, I was diagnosed with Ulcerative Colitis, and husband left me with no given reason) and now I've been diagnosed with this. I passed my hearing test with flying colors, but my aduitory nerve isn't responding. It's very hard to hear anything if there is more than one sound going on and I have ringing in my ear. My tumor is small (11.5 X 5 mm). I live in Southern Maine and have an appoinment in Boston but not until mid July. Does anyone have any opinions about whether gamma Knife or surgery is safer? I've heard with surgery there is a high chance of them hitting the facial nerve and causing some kind of facial paralysis. I was also hoping anyone could recommend a good Doctor in either the Boston area or in the Portland Maine area. Thanks so much for reading and/or responding to this desperate post!
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I know many, many people are going to answer your post, so let me be the first. You didn't say how old you were, but many of us older folks (60s & above) with small tumors opted for "watch and wait." Some can't stand the thought of having that little guy in their heads and instead want it OUT. Others develop issues that mean their quality of life will be better with it gone, even if it's small and they're over 60. Like me. Have you been advised to have the tumor removed?
There are many pros and cons both for conventional surgery and radiation, so I can't advise strongly enough that you read both this site and others that are devoted to Acoustic Neuromas. That said, before my latest problem, I had personally decided that I'd go the route of Cyberknife. The other types of radiation are Gamma Knife and Fractionated Stereotactic Radiation. At the last AN symposium 2 years ago I heard Dr. Chang of Stanford talk, and was impressed with how the Cyberknife machine worked and how few aftereffects were to be expected.
For those who have the choice of either conventional surgery or radiation, I read an interesting statistic: when doctors themselves were asked which they would do if they had an AN, something like 75% said they're have radiation. But do read about the negatives too.
I developed Trigeminal Neuralgia on the AN side, so have been told by 2 doctors, both of whom also do radiation, that I will need surgery. Hopefully your choice will be open. I'm now in the agonizing process of choosing a doctor and approach (endoscopy, retro-sigmoid, etc.)
You have all my sympathy for what you've been going through. I hope that you have a support system at home to get you through this. You now have the "virtual" support of the wonderful people on this site.
Sharon
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Welcome - sorry you had to find us, but don't think you'll find a more suppportive & caring group of people! I had surgery (a good while ago) so I can't really answer any of your questions about GK or CK. If you just want someone to chat with, please feel free to PM & I would be glad to call you!
K
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There is no way I would tell you not to be scared or depressed because these are all natural reactions. I also know that things move on and you will be just fine. I just went through much of the same things you have. I was diagnosed in November and just had my surgery on Monday. I had chosen the watch and wait option but after my 6 month check up decided to go a different route. In the mean time my wife was diagnosed with a second bout of breast cancer so we moved back my surgery and she went first. Just know that the people here have been a great source of support and information for me. Just use us as you need too. Keep your spirits up and you will be in our thoughts.
Brian
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Welcome to our little club
Maine is a beautiful state...my late hubby lived in Waterboro and I visited Portland many times. I'm Canadian. We have all been there, so we understand ur anxiety. But remember there is life after AN. My tumor was small, but I opted for surgery to have Booger removed...I was tired of him living rent free in my head space...so I booted him out...lol...
JO ;D
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Hi!
Welcome to our little corner of the internet. I'm sorry you have an acoustic neuroma diagnosis but glad you discovered this website and decided to post on our forum(s). You certainly have been through a lot but at least your travails can help you put this AN thing into a proper perspective. It's not inconsequential but with treatment, it can be dealt with.
As many will tell you, irradiation (GammaKnife/CyberKnife) is not invasive and carries less risks than surgery, including infection. The downside is that there are possible consequences (headache, dizziness) and the radiation may not permanently stop the tumor's growth, requiring surgery at a later date. That is not likely but is possible and has to be brought into the equation when making a treatment decision. With radiation, you'll also need bi-annual MRI scans for many years. Endoscopic surgery is relative new but appears to have great potential. However, few doctors perform this surgery and the long-term results are unknown at this point. Microsurgery is common for acoustic neuromas and there are 3 distinct 'approaches'. Hearing loss is very possible (guaranteed with 'Translab') and healing takes weeks or months. The risk of facial paralysis is small but not to be dismissed lightly.
Because my AN was quite large (4.5 cm) I underwent 'debulking' surgery with good results (no complications) that was followed (3 months later) by 26 FSR sessions, which were uneventful and relatively easy. Again, no complications. That was 3 years ago. Today, I'm fine and living a normal life. Others have had similar experiences. To be honest, some have had complications, often temporary. Some have years-long post-op issues to deal with. There simply is no guarantee for any particular treatment. If there were, we would all go that route. FWIW: I would have opted for radiation, had I been eligible. My AN was too large for that and pressing hard on my brainstem, which was serious. However, on hindsight, my surgery/radiation went well and I wouldn't change a thing, but that's me. You'll eventually come to your own decision on treatment, but there is no need to panic or feel rushed. Your relatively tiny tumor gives you both time and options, so use them well. We'll try to help.
I live in Connecticut and will let those in the Boston or Portland, Maine area suggest doctors and facilities. There are many, I know. Be sure to consult more than one doctor in one specialty.
I wish you better days and hope you'll visit this forum (and others) often. Consider us your 'AN family' - because we are. :)
Jim
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"yjhollenbeck " ......
Welcome to this Forum. Sorry you had to have an AN to search for us, but please know that this is probably the most sympathetic and understanding group of people out there .....
It sounds like you have had way too many other issues besides your AN. I truly am sorry you are having so many things hit you at once. It will be better!!
As for radiation vs. surgery, you have already had many good responses to your posts. Your treatment decision so much depends upon the tumor's size, location, your symptoms, and your personal comfort level with each of the treatment options.
In my case, I had an unusually rapidly growing AN (most grow very slowly!) that was already outside the auditory canal when diagnosed. Since I still had 80% of my hearing and music is a very large part of my professional and personal life, I wanted to try to preserve my hearing (I retained 20%). I also just wanted the thing out of my head ..... but that was my hang-up. I had no post-op facial nerve involvement and no headaches ..... some manageable balance issues.
My thoughts and prayers will be with you as you go through this research/decision-making process.
Clarice
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With all due respect to Jim (who I admire and usually agree with completely), the risk of radiation not stopping a tumor's growth is arguably negligible -- only about 2% if you have CK at Stanford, according to their statistics. In fact, the risk of a tumor growing back after CK is virtually the same as the risk after getting the tumor resected (cut out during surgery).
Depending on the size and location of your tumor, the risk of facial paralysis from surgery may not, however, be that small. Research I'd read while still in watch-and-wait indicated that surgery posed about a 30% chance of permanent ipsilateral (i.e., on the AN side) facial paralysis with my tumor then measuring 1.8 cm. You should ask at least three neurosurgeons what percent risk of temporary or permanent facial paralysis you would have should they resect your tumor.
Here is a recent thread on the same subject which you may find useful: http://anausa.org/forum/index.php?topic=9813.0
Look down the page to find my response, which sums up the pros and cons of surgery vs radiation.
Good luck! We know what you're going through and are here to help.
Best wishes,
TW
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Hi Ysanne,
I, too live in Maine. I had to go out of state for GK, as they don't have CK or GK in our state >:(
I did meet with a neurosurgeon in Portland, who was extremely respected, but I chose not to have surgery after all.
Please feel free to e-mail or PM me, my e-mail address is in my profile.
Lisa
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Hello,
I'm sorry also for all that you've been through lately. You will find much support here - many to answer your questions, ask about you, pray for you and support you in all areas of the AN.
I had surgery (translab) because my hearing was pretty much shot and I just wanted to get it all over with and then on to the recovery. There are many encouraging recovery stories here.
And if you're looking for a doctor in Boston, I'm sure quite a few will chime in recommending the doctors at MGH. Everytime one of them has surgery there, they all talk about how they're the best!
I hope you're able to find a lot of helpful info. Please keep us posted on how you're doing in your AN journey.
Keri
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Welcome to the forum. The feelings you are experiencing are very normal. I was diagnosed 3 months ago and have had my share of moments with anxiety, but just know it gets better. I saw a surgeon and he actually recommended me for radiation assessment. I saw the Neurosurgeon who looks after gammaknife treatment and they advised on Watch and Wait. Here in Canada we only have Gammaknife. I heard that Cyberknife will be introduced shortly but I am not sure when. From what I have learned from the many peple on the forum is that the difference between both is hearing preservation and the head gear. I understand the Cyberknife preserves whatever heraring you have and you don't have to wear a head gear and it's fractioned whereas gammaknife is a single dose and you are more likely to lose your hearing. I think they both have good results from what I have read. As far as surgery the only thing I can tell you is what I have seen on the forum, and overall everybody has done fairly well give or take some issues such as facial paralysis for awhile, some with headaches, everyone is different. I understand that the facial nerve regenerates overtime whereas the auditory nerve damage and balance nerve damage are irreversible. There are many hearing devices available as well. Hope this helps. Good luck and don't panic. It's going to be o.k.
Vivian
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I understand the Cyberknife preserves whatever heraring you have and you don't have to wear a head gear and it's fractioned whereas gammaknife is a single dose and you are more likely to lose your hearing.
Vivian
To expound further on what Vivian has said: follow-up studies report that roughly 65% of GammaKnife (GK) patients have their hearing preserved, whereas 75% of CyberKnife (CK) patients have their hearing preserved. So CK is slightly better statistically in that regard, but GK has pretty comparable results. All that said, it's important to realize what "hearing preservation" means in the medical world. It doesn't mean you won't lose any hearing. Hearing function is broken down into several classes (five, if I remember correctly), with Class I denoting the best hearing function. Each class covers a range of hearing, and not a pinpoint level. So when doctors say that CK and GK preserve hearing in x percent of patients, what they mean is that the patients remain in the same hearing class after treatment. The patient can lose 15 dB of hearing and still remain in the same hearing-function class and thus be considered to have had their hearing preserved at the same level (class) it was before treatment.
Another distinction is even more important to understand: most neurosurgeons, when they talk about hearing preservation, are talking about preservation of useful or "serviceable" hearing (which might be negligible) and not preservation of hearing at the same level as before treatment. To these doctors, a 50% loss of hearing might be considered preserved hearing. No matter what treatment you are considering, you should ask your doctor to clarify exactly what he/she means when they quote your chances of "hearing preservation."
Best wishes,
TW
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Hi and welcome,
If you are going to the Mass Eye and Ear in Boston, then ask for a Dr. McKenna, I have him and he is suppose to be the best out there. I was dx with a smalll AN back in March of 08 and continue to watch and wait with my next MRI in Feb of 2010.
It is normal to be scared, when I was dx with my AN, my brother had a gleoblastoma (CA brain tumor) and died that October. So 2008 was a terrible year for me dealing with my own dx and my brothers death.
This forum is great and full of information. Please if you can give out a little more information about yourself. I am 46 and live in Mass.
God Bless and try to keep your spirits up.
LisaP ;D
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Welcome to our forum,
The place no one wants to be a part of, but once you’re here you appreciate all the great and caring folks you’ll find. I was dx in October 04, and had surgery in January 05 for a 1.5cm AN. I first went to Mass Eye and Ear and my ENT doctor was Dr. McKenna and my neurosurgeon was Dr. Fred Barker at MGH. I did not have any facial paralysis, just SSD, which I knew was a high chance of. Had headaches for a while, as well as fatigue, wonkyhead, and balance issues. They all get better with time. I took 10 weeks off work then went back part time for a few weeks which I recommend.
Good luck with your research. You will not find a better, more caring group than this one.
I live in Mass but we have a camp at Schoodic Lake in Maine, 5 hours up. We love your state as well. Good thoughts and prayers for your speedy recovery.
Sue
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yjhollenbeck, just so you know you're not the only one, my wife left me in December '08, and I found out about my AN in March '09. Talk about a crappy start to the year. PM me anytime to chat. I'm having retrosiggmoid surgery this Wednesday, so I'll let you know if it's as fun as everybody says it is ;) This forum is great to go thru past posts and read about people's experiences, and there decision making process. Good luck, and don't be a stranger!
Oh, about the radiation vs. surgery. My surgeon said he didn't like that option for me, because of my young age(25). Long-term affects of radiation are unknown/questionable etc. I know radiation is a better option for different people. Getting more than one doctor's opinion is always a good idea as well.
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the younger you are , the more i'd recommend gamma knife. why? cause the facial nerve issues especially for young women . us old guys can get away with looking "scholarly" as my surgeon put it lol.
i had tinnitis too and no auditory function at all on my AN side. i picked surgery because if gamma knife doesn't work, 6 months later they find out from another MRI, and you either re do gamma or do surgery then.
plus being 56 at the time of my surgery 19 months ago, aging more didn't seem all that good from a body perspective, but you're young.
my tumor was all over my facial nerve, number 7 i think it is. i still have residual effects. but its nothing like it was 6 months ago. BUT that first couple months i looked like a stroke or Bell's palsy patient.
the long term effects i guess is an issue , but being an engineer b4 being a college prof, i kinda think they'll handle that better then they can now anyway.
i been to our local AN support group and folks who had this done 15 , 20 years ago marvel at me and my face LOL.
oh by the way my tumor was about the same size as yours 10.5 x 2.5 . almond shaped and about as big as a big almond
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Hi YJ and welcome.
I don't have any doctor suggestions to offer, but just wanted to say hello and that I LOVE the Portland area! If you need some company - let me know - it would be worth the long drive from TN for some good lobstah! And it might make you feel better too!
Lori
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Hi YJ! Sorry you had to join this group, but as you are already finding out, there are FANTASTIC FOLKS here! ;D
I cannot answer your surgery questions, as i am still in W & W myself.
Did you research with House Institute? I believe you can send your pics there for a 2nd opinion.
I am considering CK myself, and going to Stanford. Everyone says that as you are making your decisions, to 'go with your gut.'
My thoughts and prayers are with you today. As others have said, you are not alone.
Take a deep breath and take your time researching.
Sincerely,
Sue
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Yes, what Yoga and Keri said!
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Welcome. I'm glad you found us.
I see Dr. Michael McKenna at Mass Eye & Ear, as do many of us in the Boston area. I had surgery with him and Dr. Barker at Mass General almost three years ago now. I still see McKenna for follow up. He's definitely one of the areas experts on ANs. There are also several options for radiation treatment - cyberknife at Beth Israel, gamma knife with Dr. Noren in Providence, and others that I'm forgetting.
I chose surgery, although you'll find that the choice of treatment is very individual and depends greatly on your unique situation. After a year of watch-and-wait (on McKenna's recommendation) we found my AN to be growing much faster than expected and so had to be dealt with sooner rather than later. For a variety of reasons, I chose surgery. (Let me know if you'd like more details.)
It sounds like you're dealing with a lot right now. Take things one little step at a time. You will get through this.
Katie
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Hi and welcome. Well, I'm beside myself as I'm usually one of the first to chime in, esp. for someone here locally to New England .... so, shame on me!
I'm glad you found us here and hoping the info that all have shared is helpful. Like many that already posted, I am located in metro Boston and was treated with Cyberknife radio-surgery (radiation) at Beth Israel Deaconess in Boston. My personal goal was hearing preservation... thus, the CK team did a 5 day approach with me.... and now, over 3 yrs later and based on my last hearing test (this past Feb), they saved my hearing.... I am at the same level of hearing I was before the CK treatment.
so, with that said, please accept my "welcome" to you and if you need assistance with researching info on the site (best way is to use the "Search" option at the top of the Discussion forum home page), just let us know.
Again, welcome.
Phyl