ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Nancy Drew on June 06, 2008, 07:42:20 pm
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Why does the word "surgery" for treating my AN just freak me out? I have already crossed this option off my list even without researching it very much. Do you think maybe this is a sign that surgery really isn't the way for me to go? Do I follow that feeling in my gut that says, "no surgery". I have had a couple of surgeries in the past so it's not that surgery freaks me out, but with the AN surgery I don't even want to go there. I know the GK and CK have risks too, and I know they will not get rid of the AN--just break it up or slow it's growth, but it will always be in there. And with surgery I hear the AN will most likely be out of there--totally. In my wildest dreams, I would have the gamma knife, and the AN would be gone, and I would never have to think about it again. I guess there is no perfect answer. I read success stories here and not so successful stories here. No two ANs seem to be the same, and it is sort of a guessing game in some instances as to what the best treatment would be. The jury is still out for me. My AN is small, but it has grown recently. The hearing stuff bugs the heck out of me. My doctor recommends gamma knife, but he is not opposed to surgery. He just happens to have a passion for his gamma knife. Oh, what to do. I admire all of you who have had surgery and all of those other treatments including wait and watch. Thanks for your support and any input. Nancy
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Nancy~
I am a big advocate for always going with your gut. I, personally think there is a lot more there than just a "feeling" - I think it is something that you should listen to. I have a VERY strong faith and I feel like that it(gut feeling) is from above. I know that there are many here that don't believe that way, but that is how I feel! You do what YOU think is best for you!
K
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K,
Thanks I needed that! I haven't always gone with my gut feelings in the past, and it has usually turned out that I made a mistake. Maybe I just needed to hear what you said. Maybe there are some things you "just know". I think I'm going to go with my gut unless I get some strong evidence otherwise. Thanks. Nancy
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I to strongly believe in your gut feelings and trusting them. I had the same gut feeling the day before and the morning of my son's surgery and just dismissed it as a worried mother thing and boy do I feel badly about that now. I not only had the gut feeling thing but also had a sense of doom which I had never experienced before so I was not sure what to do with it. So like Kaybo I completely agree to listen to your gut and go with what works for you and what you feel comfortable with. Kisses to your forehead. 16 :-*
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You just said it, " No two ANs seem to be the same", ??? And it is human to let surgery freak you out, it did me when I found out I even had a tumor in my brain. I think it was worse to know I had a tumor than to have it removed.
Good luck on the out come.
eve
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Nancy - here is my two cents worth.
I agree with the "go with your gut" suggestions, but only after researching all your options and weighing the pros and cons of each. When I was told I had the choice of radiation or surgery, I immediately told the doctor there was "no way" I was having surgery. Yet, that was what I ultimately decided to do. And surprisingly enough it didn't take me a whole lot of time to make that decision. I think I even shocked myself.
Treatment choice is a very personal choice - and it is your choice. IMO, any good doctor will tell you that.
Make sure that you consult with a doctor who treats ANs with both radiation and surgery, so you get both sides of the picture. It's only natural for a doctor to recommend the treatment option he personally performs. So if your doctor only treats ANs with radiation, it's a good idea to also consult with one who treats ANs with surgery - and vice versa.
In addition to "going with your gut", I'd also suggest establishing a comfort level with the doctor or doctors who will be performing your treatment. I found that once I made my decision, having no doubt that my doctors where the ones to treat my AN was invaluable. There was never a double in my mind that I picked the two guys that were right for me. And not having this doubt really eased my anxiety going into surgery. It also helped me not to second guess my decision once I made it.
Jan
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Nancy -
I think anyone who says the idea of brain surgery doesn't freak them out is insane! So, consider yourself perfectly sane in not being crazy about the idea.
I know I was freaked out too, but didn't have any other options. Fortunately, I had that gut feeling that my surgeon was the right one for me and so I was able to find comfort and peace in that. You'll have that gut feeling too, when you make the right decision for you and choose which doctor you want to use.
Lori
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Jan and Lori you guys are such smarty pants and I completely agree with you also. Brain surgery should freak you out and right after diagnosis is a very difficult time. So Nancy learn all you can take it slowly and look to us for our support and of course our sometimes crazy humor (good morning thread comes to mind). I was reading the thread to my Mother and she said "I think maybe I should be worried about you guys". LOL I told her that yes maybe she should be. Kisses to your foreheads. 16 :-*
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Nancy:
Your reflexive aversion to surgery, specifically brain surgery, is perfectly understandable. It would be uber-weird if you thought brain surgery might be 'fun'. However, because of the complex nature of an acoustic neuroma, both options need to be considered to come to an informed, rational decision that you'll feel comfortable with. In some cases, the desire to have the tumor 'gone' trumps the natural aversion to surgery. Often, as in my case, the AN is simply too big for radiation to be efficacious and both surgery and radiation have to be used to address it.
Frankly, had the option been open to me, I would have went with radiation and avoided surgery - but I didn't have that choice. Fortunately, my surgery went well...but not all do. Surgery carries distinct risks - as does radiation. Although AN surgery and radiation have both greatly evolved, neither approach can absolutely guarantee that the tumor will not re-grow at some point in time or that the procedure won't cause nerve damage that will impact your quality of life for some time.
As Jan stated, the decision as to treatment (surgery/radiation) is totally yours. Just be certain to make it based on knowledge and confidence, not on fear and misunderstanding. Doctors certainly can help, as can this website and advice from 'postie' AN patients, like us, but ultimately, you will have to make the final decision - and live with it - not the doctor or any of us. For that reason, be cautious, rational and don't allow reflexive emotions based on fear to mislead you. Most of all, be informed. We'll help all we can, of course, and support whatever decision you make, Nancy. With your hearing issues, you should probably not procrastinate on this, but don't allow anyone, including doctors, to 'rush' you into a hasty decision you may later regret.
Please continue to stay connected and allow us to do what we can to support you on this journey.
Jim
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Hi All!
I am strongly feeling in my gut that the GK might be the way I go. There is Cary here on this forum who lives in Denver which is where I live also. He has had the GK treatment with the same group of doctors that I am with now. They do surgery and GK so I think I have the benefit of knowing they are not pushing one over the other. There is a CK in Boulder, but as Cary also agreed, there isn't much info other than what they say on the commercials. It is a fairly new facility. Just don't feel comfortable with that, and I want to stay here in the Denver area if at all possible. So, I'm waiting for the panel's opinion hopefully in the next couple of weeks. If the doctors say wait and watch is still a good option at this point since the AN is small, then I might do that and see how it goes. Lots to think about, but at least I am having gut feelings.
Nancy
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Hi Nancy,
I was completely freaked out about surgery, too. It is a very scary thing. I had 2 surgery dates scheduled but cancelled at the last minute because it didn't feel right. Well, third time is a charm I guess and I made it to my 3rd surgery date. I'm sure the dr was not too happy with my cancellations but it had to feel right for me to proceed. I was also turned down at several places for radiation because of the size of the tumor. It is a difficult choice to make. I wish you the best with your decision, kelli
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In some cases, the desire to have the tumor 'gone' trumps the natural aversion to surgery.
Jim, may or may not know it, but he's describing part of my surgery choice philosophy. I'm just not the kind of person who can wonder what is going on in my head. But that's me and it shouldn't influence your decision.
And smarty pants, 16 :o Lori & me :o LOL
Jan
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Jan, It bugs me that if I should go with the gamma knife, the AN will still be in there somewhere doing what it wants to do. But, surgery can be unpredictable also so I worry about that as well. Too bad I broke my crystal ball. Maybe I should take bets in Vegas! Sorry for the sick humor. I'm just spending too much time over thinking! Nancy ???
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Nancy -
making your treatment decision can be similar to gambling in Vegas - or anywhere else ;)
You basically do the best you can to make an informed decision by finding an experienced doctor and weighing the pros and cons of each treatment option. Possible side-effects tend to be a huge decision-making factor and you will be given statistics (aka odds). When you try to figure out what side-effects will apply to you, you are basically playing the odds and IMO you are also somewhat trying to decide if you "feel lucky".
Everyone plays the odds in one way or another; they really have no choice, since no doctor can guarantee 100% the outcome of any AN treatment (and no one can reasonably expect them to).
I played the odds by choosing retrosigmoid surgery in an attempt to save my hearing and I lost that bet :( But I also played other odds like having a CSF leak and having permanent facial nerve damage, and in those cases, I "won" :)
In a way I'll be playing the odds for the rest of my life when it comes to my AN, because although it was completely removed, my odds of regrowth are still 1-2%. Not a huge gamble, but a gamble nonetheless ;)
Jan
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Nancy Drew
I am with you in take bets in Vegas! Sounds more comforting and relaxing.
eve
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Hi Nancy,
I know how crazy all this stuff can get. The word tumor freaked me out. Thanks for the nice compliments about those that had surgery are brave. It's true. Nobody really wants any part of surgery. Whoe really wants radiation either. I believe everyone on this board is brave just in different ways. Those that elect radiation fight it out to the end and accept whatever side effects along the way. Wait & Watchers must keep their minds in check and not let it get the best of them. It's a shame that one must even make such decisions. On the day of my surgery I woke up hours later and it was over. Didn't feel a thing and didn't know a thing. Recovery was tough but time does heal. Although these tumors are benign they have a lifelong impact in some form. I just wanted to say good luck to you in whatever you decide. I wish you and everyone here the very best. Steve
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FlyersFan68 , your quot is very true.
"Although these tumors are benign they have a lifelong impact in some form."
eve
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I'll certainly second that!! ;)
K
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Steve -
very good post - full of many truths!
Haven't seen you here in a while; hope you're doing well :)
Jan
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Thanks Jan,
I just reached my 4 year mark in April. I am scheduled for an MRI in October (been awhile) and will meet with my surgeons then. The last few have been clean. I've seen many posts from you and must commend your advice and compassion towards the newbies. A nice sincere balance is a beautiful thing. Keep up the good work. :)
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Steve, it has been a while! Welcome back. I guess now that hockey season is over....nothing better to do, right?
Lori
p.s. Sorry, I'm a Devils fan... :P
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Thanks Lori,
Any fan of hockey is a fan of mine even if you're a Devil's fan. I see that you had surgery in Nashville. Are you from the New Jersey area? Predators are a good hockey team these days. It's a bummer the Flyers lost but it was an exciting run. I'm just enjoying the Phillies right now.
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Steve,
Yep, grew up in NJ - just temporarily exiled to Nashville thanks to the Navy. You're right, the Predator's did very well this year. Must have been because I'm here! ;D
Of course, that also makes me a Yankee's fan...but my sister and her family who live outside Philly are Philly fans. I'll be flying over their stadium on the way to the airport on Thursday. I'll look for you from the plane and wave!
Lori
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Hey guys, Even though I'm racking up the posts, I do feel like a newbie now that I am in decision mode. Jan and all of you who post often are a great help. Just the fact that you (newbies included) take the time to read and post makes a big difference. Wisdom, encouragement, advice and support are all wonderful things to have at hand, and it is also a comfort to share with those who are going through the "beginning" of this process of learning to deal with their AN. Yes, I can see now that the AN (no matter what we decide to do with it) will always be a part of us, but I think it is perhaps best to think that it does not "define" who we are. I have bipolar disorder, and it is helpful for me to know that I am so much more than the lable. Same way with people who have diabetes, developmental disabilities, cerebal palsy, etc. Of course, we do have a "club" going on here, and we can stand together and give each other support. I guess I'll get off my soap box. Thanks all! Nancy :)
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Well put Nancy you are not the lable and please do continue anytime with your soap box we have all been there. I'm very proud of your progress and acceptance of what you are going through. You should also be proud I believe you will fit in here very well. If you read my signature line I too agree about these things not defining who you are. Kisses to your forehead. :-* 16
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Nancy - you can get on your soap box anytime you like. Just be careful - this little club's balance isn't so great! :D
I hope you are able to get all the wisdom and support you need to make your decision. I know there's plenty of both around here!
Good luck!
Lori