ANA Discussion Forum
General Category => AN Issues => Topic started by: DR on August 08, 2009, 01:45:33 pm
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For three years I have tried to ignore the tinnitus in my right ear. In July it became more pronounced and, at the urging of my wife, I made an ENT appointment. I am sure you all are very familiar with the routine, so I will spare most of the details! I received a call on Wednesday from the ENT office informing me that I needed to go for an MRI. I picked the script up at 1pm and was in the MRI machine 4 hours later. (I guess having a neighbor and friend who is a Radiologist can have major benefits!) By 6pm we had the results. A 1cm x 1cm AN.
I am now looking at all options, the only one I have ruled out is "Wait and Watch." I feel that I would only be putting off the inevitable and should take action while the tumor is still relatively small. I would love to hear from others, especially those of you who discovered the AN fairly early while it was still small.
Thanks - Dennis
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Hi DR and Welcome to the best group in the world but one we would all rather not have had to join! :D I can't tell you much about SMALL AN's b/c mine wasn't but just wanted to welcome you now...I'm sure someone will come along soon that can help you out!
K ;D
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DR ~
Hello - and welcome! I'm sorry you're the recipient of an acoustic neuroma diagnosis but pleased that you've discovered our website and decided to post a message seeking more information.
Unfortunately, I can't offer the specifics you're looking for regarding a small AN because mine was large and surgery was the only immediate option. I assume you already know that surgery (traditional or endoscopic) as well as irradiation are all possible choices. Some AN patients want the tumor out of their heads, now and forever. Others want to avoid surgery and choose radiation. Both have their individual pros and cons and ultimately, the decision is yours, alone. You will have to live with any consequences, not the doctor, not any of us. We can offer our experiences and suggestions but our axiom here is that no two AN patients have the exact same experience - or outcome. Some surgery patients are running marathons weeks after their surgery, some are dealing with chronic problems years later. Same with radiation patients; some do splendidly, others less so.
There is no panacea in sight but knowledge is power and doing research on the statistical efficacy of treatments as well as the reputation and experience of doctors involved in treating AN patients is necessary as it is useful. We're not doctors but we try to offer practical advice based on our experience. There are many forums dedicated to specific AN issues. I suggest you peruse the ones that are relevant to you and take what you can, but don't 'overdose' on information -that can be debilitating in it's own way. Take a little at a time and ask questions when you have them. We're 'open' 24/7. This is a very active site and the folks here are eager to help a 'newbie'. Just ask. :)
Jim
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Hi DR,
seems like only last week I was in the same boat. Mine was 2.2 cm, larger than yours, but I still had the radiosurgery option available. Ended up going for surgery after much deliberating. I am also not the watch and wait type, however, it took me 6 months from diagnosis to surgery, so don't jump into anything too fast, you will need time to digest the news (even if you think you did already), get used to it, and research your options. I would also take into consideration where you live - are both surgery and radiosurgery available near you? who are the surgeons/radiologists? can you travel if need be? is insurance an issue? how about your overall health? support/time off after a procedure? All things I considered.
Just some thoughts. I wish you the very best, prepare for a lot of reading and changing your mind a few times, just don't think it needs to be done next week, take your time.
Helga
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I feel that I would only be putting off the inevitable and should take action while the tumor is still relatively small.
This boat sounds familiar. :)
I consider myself lucky to have had my AN diagnosed when it was just 0.8 cm. I too felt that I should act on it, rather than wait, as it was clearly acting up and affecting my hearing. I did Cyberknife at Stanford in Sep 2007, and so far am quite happy with that choice.
Welcome to the forum, I hope you find it helpful.
Steve
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Thanks for the kind words everyone. I'm still kind of in shock. Over the last few days I have spent quite a bit of time telling family and friends... and trying to soothe their concerns. My wife and I decided not to tell our kids (5 and 7) yet.
I am aware of the two choices - surgery and radiosurgery. It is so early for me that I have not ruled anything out yet. I will be looking at all options and talking to many people over the next few months. My plan (subject to major changes) is to make a decision by the end of September.
I will begin calling to set up appointments this week. SE Michigan has some very good surgical options including Michigan Ear Institute, University of Michigan, Henry Ford Hospitals, etc. There are also CK/GK options nearby, but if I go that route I may end up out of state.
Steve - did you consider surgery instead of CK? If so (and if you don't mind me asking) what made you select CK over other options?
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Welcome, Dennis. Acoustic neuromas are generally slow-growing and not malignant, which gives you time to do the research you need to make a decision. Know that you have plenty of company now that you found us. Ask as many questions as you need, including what's with the knit hats? There's usually someone chiming in with an answer. You'll be ok.
Syl
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Steve - did you consider surgery instead of CK? If so (and if you don't mind me asking) what made you select CK over other options?
Dennis, do you want the short version or the long version? :)
The long version is here, posted in May of 2008: http://anausa.org/forum/index.php?topic=3929.msg64193#msg64193
The short version, quoted from the above post:
"I also manage to calm down enough to do other things, including a short family vacation, and a business trip in August to Colorado. During one of the fascinating meetings in Colorado, I am doodling on my note pad, and start making a list. Left side, middle fossa surgery. Right side, CK radiation. I make entries for things like: Recovery time. Likelihood of preserving hearing. Likelihood of facial nerve or chronic headache issues. How long before it is over.
Oddly enough, though it was not my intent, that was the day I decided. Radiation would take longer to finish up; the post treatment effects can drag on for 6 to 18 months. But the initial recovery time would be shorter, the chance of preserving hearing would be better, and the risk of chronic side effects would be lower. When I was flying home from Colorado, I realized that I had decided on CK radiation treatment."
Everyone's story is different, and everyone's AN seems to be a little different as well. You will have to follow your own decision process as you find out more about your AN and possible treatments. You are already off to a good start...
Steve
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Hi Dennis and welcome. I truly hope that your research here will help give you answers that you seek.
Like many, I considered surgery vs radio upon first diagnosis... and opted for CK. Why? Read page 2 of this thread (my journey into AN treatment options) and you will see (towards bottom, in bold/red "Updated Info") that my brain surgeon actually told me she didn't want to cut out my AN and to go have radiation done:
http://anausa.org/forum/index.php?topic=847.15
Needless to say, I was totally shocked that someone who "cuts" for a living told me she didn't want to cut and have the radiation. She was versed on GK vs CK and I shared with her my research for CK.... and now... 3-1/2 yrs later... she grins when she sees my hearing test and head MRI's. We both know that we made the right choice for me.
... and I know you will do the same for you... make the right choice for you and your situation.
Hang tough..we're here to help
Phyl
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Hi Dennis and welcome to our group
My deciding factor in having surgery was this: surgery removes the invader while radiation arrest its growths but still remains living in your head. I wanted my OUT...it is all a personal choice....
good luck in a speedy decision as this is the hardest part of this journey
JO ;D
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Hi DR
Welcome to the forum. This can be a very confusing time. While I understand that the Watch and Wait process can be very nerve racking, it also gives you the opportunity to explore your options and digest what is happening to you physically and emotionally. During this time, you will have mixed emotions but it will allow you to accept the circumstances, come to terms with it and essentially make a decision that is right for you. Good luck!
Vivian
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Hi Dennis,
I went the surgery route because of the size and location. I ignored my symptoms for MUCH longer, shame on me!
Good for you, you know about the bugger early and there is no rush to jump to a treatment-it is benign, it is very very slow growing. If you feel new symptoms, most likely it is not because it has started to grow more rapidly. We are just more in tuned to how we feel now that we know there is something in our head!
Good luck with your research, this is a great forum and you may end up with a surgeon that someone has experience with.
All will be well,
Maureen
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Welcome Dennis,
Knowledge is power!
You will know what is right for you, you already know you are not the wait and watch type.
You are not alone. When I read your post that you are soothing others it really hit home. Here you can talk of you fears and concerns freely. I am so happy to have the support of this forum, and now you do too!
Michelle ;D
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I am new at this too - recently diagnosed.
As others have said, there is typically no rush to act. My recommendation is to have a consultation with a very experienced MD. Carefully review your options.
For now, I am doing "watch and wait". The real issue is the growth of the tumor. This will be different for everyone- time will tell. My doctor informed me that he has followed many patients now for over 20 years. In these situations, no treatment has been needed and no further complications. There are serious potential risks to surgery and/or radiation- so any action needs to carefully consider all risks and benefits.
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Hi Steve and Welcome!
I am so glad that you are able to watch & wait and (hopefully) have no symptoms. I agree with the Dr. that there are certain cases where no action needs to be taken and that is a good thing. However, in many more cases, treatment will be necessary because the symptoms are so severe that it is inhibiting lifestyle or life-threatening because of the size or location (brain stem involvement) - that is what happened with me - I had surgery within a week of the discovery of my AN...it was the size of a man's fist and my brain stem was all the way on the left side of my head - NOT A COMMON THING WITH AN's! Life is great now though!
K ;D
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K:
I am new at this and just trying to make sense of it all. Your situation sounds very scary and you were very brave - happy all has turned out so well. This site has many examples of successful outcomes. My initial understanding is that surgery or radiation is something you do when you have to do it. In a sense the surgery/radiation does not make you better (e.g. hearing loss will not return). However, you do it as necessary so situation does not get worse.
S
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Welcome to the forum Dennis. This is a great place for info and support. Mine was 1.2 cm x 1.1 cm. I would have preferred to have watched and waited but it didn't start in the normal place and was already pressing on the brainstem. Because of that, surgery was the only option. IMO the most important thing is finding a Dr. that you are comfortable with and trust. You will know it when you do. I literally ran out of the first dr. I talked to but the 2nd was completely different. And he had a lot of confidence in himself. I had the retosigmoid surgery. It will be a year the 28th of this month. I went for the 1 year (a little early) post-op mri Friday and see the dr. tomorrow morning. He did get the whole tumor out so I'm not expecting any bad news. I did have a meningitis complication after surgery which is the cause of the headaches I get now, although they are appearing less often. I still have some dizziness and balance problems and memory which I had before the surgery. But everybody is different and everybody's body reacts differently. You definately have time, so dont rush into anything. Make sure you are comfortable with the choice you do make. That is the most important thing. Everything will turn out ok.
Take care,
Lois
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Dennis .....
Welcome to our exclusive (unfortunately) group! As the others have said, making the treatment decision is a very personal one. There are many factors to consider: exact location & size of your AN, your symptoms, speed of growth (usually very slow, but can be more rapid so tell your ENT of any new or rapidly progressing symptoms), your personal comfort level with leaving a tumor in your head, etc.
In my case my tumor size was borderline for radiation and it was both in and out of the auditory canal. I had sudden hearing loss and increasing balance issues, leading up to the diagnosis. My particular AN was of the rapidly growing variety (quite unusual) and I had no desire to keep the thing in my head. Therefore, upon the recommendations of my ENT, a general surgeon friend, and the neurosurgeon, mine was surgically removed via retrosigmoid approach and I have absolutely no regrets.
As you have been doing, continue your research and talk with every medical person you know. After this, listen to your inner self and go for whatever treatment seems best for you. As many of us will say, the decision for type of treatment is one of the most stressful periods in the AN journey. Whatever treatment you choose, go for the physicians or surgeons with the most documented successful experiences you can find ...... cannot stress that enough as it truly is essential for a good result.
My thoughts and prayers as you walk through these days of research and treatment decision.
Keep us posted on your journey.
Clarice
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Wow, I am completely blown away by all the responses! This forum has been incredibly helpful. The individual accounts and links provided have allowed me to get up to speed quickly on my options.
Thanks to all of you who have taken the time to share your thoughts and experiences.
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Hi DR- Just wanted to welcome you. you've gotten some great insights from my fellow ANers, not much I can add to what they have said. I wasn't a candidate for radiation because of the placement; but I would have seriously considered it vs surgery if that had been an option. Hard to say what I would have decided. Both come with their own set of risks/rewards. It sounds like you have time on your side, which gives you a chance to research options. Let us know how we can help, okay?
(Steve, see you in Chicago!)
Debbi
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Hi Dennis
Welcome - this is a great place to learn options.
As a different perspective, I am a watch n'waiter - 37 years old, mother of 4 kidlets (7,5,3,2), full time employed at a big investment bank, seemingly very part time mother right now. I have been told to wait it out - and my doctors (ENT surgeon, radiation oncologist and neurosurgeon - obviously 3 different opinions) don't necessarily view it as delaying the inevitable. [They have done research on watch n' wait ... and firmly believe I have a very good chance of getting to beyond 10 years without treatment. But, alas, won't bore you if it isn't the right choice for you. However, if you want the research I was provided PM your email to me and I will send them on.] I am lucky the tumor is small and intracanicular, and causes no symptoms (save hearing loss, tinnitus, and intermittent balance issues).
I mentioned this on a different newbie's post earlier this week - I like to watch other people make decision, I learn a lot from their decisions and their outcomes.
Funny enough, I have a benign breast tumor (actually ... I hope, no firm diagnosis yet, next week) of about the EXACT same size as my AN - so I am on a double watch n'wait. The race to see which one grows faster. AS someone else mentioned, personality is a big part of the decision making process - I am a bit laid back and laissez-faire, it works for me.
Good luck.
Ann
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Dennis,
I'm just back from a short vacation and want to welcome you. You've come to the right place for information and understanding. AN is a difficult thing to wrap you head around (no pun intended) and having options for treatment choice can be confusing. Ask any questions, vent laugh and cry, we are here for you.
Wendy
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Welcome DR & Steve 114!
As you have already discovered, this is a special place with a FANTASTIC group of folks who understand your situations.
I am W & W and wouldn't be here if it were not for my sister, diagnosed 6 months before me - bless her ENT who didn't drag things out, and got her the tests she needed. So when i realized she was describing the very symptoms i had, i went to a major medical facility and asked for the MRI (w/contrast.)
We are here for you - to support and listen.
Ask any questions, do your research. If you need a break, take a break from it all.
When you feel like it, send us an update.
Many thoughts and prayers on this AN journey.
Sincerely,
Sue
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Sorry for the highjack but Sue I am interested that you and your sister both had an AN. My brother is in Michigan and is currently being tested for something neurological, maybe an AN?
Is there anyone else out there who has siblings or children who have developed an AN as well as you??
Michelle ???
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Ask any questions, do your research. If you need a break, take a break from it all.
When you feel like it, send us an update.
Take a break... that is exactly what I did for the last few days. As I'm sure all of you realize, the amount of information available online is staggering. I have spent hours reading first-hand reports, abstracts, etc. and just needed a few days away from it all. Golf, a Detroit Tigers game, an evening out with my wife and spending time with our kids... just what the forum ordered.
I have a consult scheduled at the Michigan Ear Institute later this month. I called the House Ear Clinic (L.A.) on Friday and spoke with a nurse. To my surprise I received a call from a H.E.C. doctor on Saturday morning. It was around 10:45am EDT (7:45 Pacific) Spoke with the doctor for 20-30 minutes. I also plan on calling Stanford this week to discuss the CK option.
The ENT office provided me a copy of all my records. The relevant info: 9mm X 9mm X 11mm; hearing loss is approx. 40db between 4000-8000hz; word recognition is 100% (I like that figure.) ENG test showed an issue but I'm not sure how to translate that data. I'm not having any serious balance issues, so that is another plus for me.
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Hi DR! I noticed that your looking at all your options. This is a good thing to do without rushing into things. I have an AN approx. the same as yours. Have been W+W for 2 years now awaiting my last MRI report and Dr. visit. Iv`e been going on "stable" so far and hoping for at least the same to W+W for another year. Alot of ways to deal with this depending on your own individual circumsatnces. Will post on W+W board, Best Wishes, Mickey
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Hi DR! So glad to have an update from you and how you are progressing with your research.
ALSO good to hear you took a break -- even with information from my sister, i had to go read it all for myself. :o
[And of course, her journey is different from mine, though we can talk about ANs in general.]
Anyway, i have been reading, researching, etc. for about 10 months now. Sometimes W & W is indeed nerve-wracking!
And i actually believe i know what treatment i would follow today if i had to choose, so that is a good thing.
I decided to wait for the official 1 year MRI to make any major decisions.
Also, our health-care system woes are making me extremely nervous - now there is a factor i did NOT anticipate.
So i may have to deal with the whole AN soon, just to get this behind me.
You sound like you are on track at this point. Keep in touch, and go for the best!
Sincerely,
Sue
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Hi and welcome, Dennis.
Tuning in a little late here - I was in San Diego for business then went to the ANA Symposium in Chicago.
Michigan Ear has a very good reputation - especially Dr. Kartush. Also, Dr. Richard Wiet introduced me to a doc from University of Michigan at the symposium. His name escapes me, but Dr. Wiet told me that U of MI is a "great place to have an AN treated". Thought I'd pass that along.
Best,
Jan
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Also, Dr. Richard Wiet introduced me to a doc from University of Michigan at the symposium.
I bet it was Dr. Steven Telian. I sat next to him at one of the meals, and it sounded like they have a good program underway at U of M. I like the idea of doctors who have experience with ANs and are actively seeking to improve their procedures and outcomes. He was also on the diagnosis discussion panel. He is inclined to surgery, but that is good if you are looking for a surgeon.
Steve
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Thanks, Steve.
I could have been Dr. Telian. He's in one of the pictures someone posted from the symposium; specifically the one at the banquet with Catherine from Accuray in it.
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Yup, that is him. The pic is in Phyl's photo bucket album.
Steve
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Yup, that is him. The pic is in Phyl's photo bucket album.
Steve
this pic?
(http://i227.photobucket.com/albums/dd186/ppearlbaxter/ANA%20Symposium%202009/ANASymposium2009022.jpg)
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That's the one. Catherine has a great smile; Dr. Telian is on her left.
Steve
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Dr Telian and Dr Thompson gave the hearing conservation after surgery Sun am and they seemed like very good with their surgeries. They gave numbers and percentages of various results and do well. Dr Thompson missed Sat as he was in Alaska and sone plane couldn't get them out of a certain area due to weather,so had a delayed return. I think I would choose them if was in their area. Cheryl R
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Yep. That's him.
The gentleman on Catherine's right is Dr. John Ryzenman. He did his fellowship at Northwestern University in Chicago and interned for a time at Ear Institute of Chicago with Drs. Wiet and Battista. He's since moved on to Ohio.
Jan
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Jan & Steve
I actually have an appt. with Dr. Telian this Friday. I wonder if I should take a copy of the picture with me an ask him for an autograph ;)
Next Friday I will be at Michigan Ear Institute, but I don't recall the name of the doc. I also have been in contact with House in L.A. and will be calling Stanford this week re: CyberKnife.
BTW, I am still amazed at the amount of information available and level of caring at this forum!
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Yes, we are an amazing group of people - but then again I've found that most people with ANs are ;D
I'm not sure it will get you any brownie points, but give my best to Dr. Telian.
He'll probably have no clue who I am, so mention that we were together in the lunch line on Saturday and he asked me if the objects with the chicken were apples. I informed him that no, they were potatoes. I also pointed out that the small green things were peas - he said he already knew that. Okay, so he'll probably remember me as somewhat of a smart ass :D
Anyway, he seemed like a really nice guy and Dr. Wiet, who comes highly regarded in the world of ANs, said he's one of the best and that's a great endorsement.
I don't know many docs @ Michigan Ear, but in general they have a stellar reputation. I've been told that MEI is 2nd in the AN surgical world, right behind HEI (House). Dr. Chang @ Stanford definitely gets points for his CK work, so you can't go wrong there if that's the route you decide to go.
Good luck in making your decision (truthfully one of the hardest parts of the entire AN Journey)
Please keep us updated!
Jan
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Jan...a smart ass??...I would NEVER know where anyone would get that idea... ::)
K ;D
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Kay, are you replacing Lori this week?
Your halo is slipping ;)
Now we'd both better stop hijacking this thread before Phyl finds us LOL :D
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*gasp!*
me? ....never...
K ::)
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*ahem*
back on topic folks. Thanks!