ANA Discussion Forum
General Category => Inquiries => Topic started by: acousticlady on October 15, 2011, 01:29:45 pm
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For those of you that were presented with the option of surgery vs. radiation, how did you decide? This decision is weighing heavily upon me. I need to choose now, but find myself stuck and scared. How did you sort through all the conflicting advice and statistics and make a choice?
Which route did you take and what tipped the scales in favor of that route?
Thank you so much.
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The more I read, the more I concluded that Radiosurgery was right for me.
My tumour was small at 1.0cm and from the literature which I had read, it was pointing me towards either Gammaknife or Cyberknife, as a therapy.
Risks of permanant facial nerve damage, CSF leaks, meningitis, and even death are a risk with surgery.
My hearing was also pretty good and I wanted to preserve my hearing.
After trawling through hundreds of extracts on pubmed, Radiosurgery appeared to have the best hearing preservation rates, the least amounts of complications in comparison to microsurgery or watch and Wait, with small acoustic neuromas.
There was however a lot of conflicting information, with medical papers saying Watch and Wait was better or microsurgery was better. So the decision between options is still not clear
Very happy with my results so far.
I found this paper quite useful
http://www.cns.org/publications/clinical/55/pdf/cnb00108000047.PDF
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Hi there! So you are now enjoying all the side benefits of having an AN huh? :) I thought the decision making process was worse than anything else I had to deal with. I decided on surgery right off the bat because I wanted that bugger out, and NOW! So I guess it all boils down to what you want to go through. Do you want surgery and all that entails, or radiation and all the benefits of that? But whatever you do decide, if it feels good and right, then you definitely will have made the right choice. It sucks because there are so many options out there for you, but that's a good thing, at least you do have options. Good luck on whatever you decide to do, please keep us updated.
Jay
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Hello Acousticlady,
First of all, take a deep breath and realize unless you have a large tumor, pressing on the brainstem, or causing extreme discomfort, you do have time to do your research, weighing all the pros and cons of each type of treatment. I am not a doctor, so I am not giving you advice, rather just pointing out that you do have time to become comfortable with whatever decision for treatment that you make. Taking the necessary time to understand your options, considering your age, the location of your tumor, the size of your tumor, all are important in leading you to the right decision for YOU. I have been watch and wait for 4+ years, which is not for everyone, however, had I rushed in and had treatment of any type when first diagnosed I would have regretted it! Knowledge is power, so take your time and you'll know in your gut, which is right for you! Best of luck
Jackie
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It depends on your age and size of the tumor. If you can give some details, I will be happy to give you my advice/opinion.
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It depends on your age and size of the tumor. If you can give some details, I will be happy to give you my advice/opinion.
Typically (but not always, depending on the treating center), the "cut off" on size of AN's for radiation treatment is approximately 3cm. I know of many, from in their teens to in their 60's, that have had radiation done with success (and some not).
The ANA has shared numerous times over the years that the decision making process (as noted here previously) is a very difficult decision but... also a highly personal decision. Many here that have been treated have done so for their own personal reasons, such as... size and location of tumor... the treating locations available to them... what their insurance will cover (ie: will insurance cover me to obtain service out of state vs. in-state), if I have a procedure done, who will care for me post-treatment, what will be the after affects... and, as I have found out here over the many years, many base their decision on "get this thing out of my head" vs "can I handle the wait to see if the radiation has worked?". That last statement seems to be the big one that many folks have noted here on the forums over the 5+ years I have been here (can also note for myself as that last question was a major factor in my decision process).
What is touted here is this...... no one can tell you one decision is right over another... not a doctor, no one here, not family or friends. What we can do is share that homework is the key to helping you make this decision and most of all.... go with your gut. The gut is key and never dismiss a guts reaction as it may steer you to what is best for you and your unique, individualized AN journey.
Hate to say it but read the entries here that have been done over the years of surgical vs. radio. Get a feel for what many report... good and not so good, which is reported in all realms of AN treatments. I've personally seen good and not-so-good with surgical and have seen good and not-so-good with radio. There is absolutely no guarantee (as with any medical treatment in life regardless if for cancer, hip replacements and yes, AN's).
Keep asking questions as you have..... but also listen to your gut... it may just steer you in the right direction for what is best for you.
Hang tough... once the decision is made (when the time is right and your homework is complete), the monkey will come off your back..... I promise! :)
Phyl
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Acousticlady:
I think you'll find this post helpful:
http://anausa.org/smf/index.php?topic=6670.0
Look about 1/3 of the way down the webpage for my post, which compares surgery to different types of radiation.
I feel compelled to make one light criticism of PaulW's otherwise excellent post: The risk of death from microsurgery in these modern times is so incredibly small that it needn't concern you. But as Paul noted, there are many other risks, and some are fairly high from a statistical standpoint (depending on which surgical approach -- or entry to the brain -- the surgeon takes).
I was initially terrified of and adamantly opposed to radiation, until I did my research and consulted with six (yes, six!) doctors. (I recommend you get at least three different opinions, as that will help clarify your options and help you "go with your gut," as Phyl wisely espouses.) Everything I learned pointed to -- in my particular case -- a worse outcome with surgery than with radiation. I eventually warmed (no pun intended) to the idea of getting radiation, specifically CyberKnife (CK). The biggest factors that steered me away from microsurgery were that the doctors I consulted said I had a 31% chance of permanent facial paralysis and 100% chance of complete hearing loss on my AN side with microsurgery; with CK, those risks fell to less than 1% (facial paralysis) and about 40% (complete hearing loss).
Assuming you've done your research to weigh the risks from different treatment options, what it all boils down to is a choice between psychological comfort (do I want this thing out of my head or can I live with a dead tumor inside my skull?) versus picking the treatment option that most of your consulting doctors predict will give you the highest quality of life going forward (good function of facial muscles and sensory nerves, preserved hearing, functional -- if possibly imperfect -- balance).
One thing to keep in mind is that there is roughly an equal risk with microsurgery and radiation (as little as 2% for a small AN) of the tumor recurring (growing back). So neither treatment guarantees the tumor will not grow again after treatment. If your main influence in choosing a treatment is the desire to have the darn thing taken out of your head, please realize there is a very small risk that the exile of the tumor may not be permanent. Quite a few members of this forum -- both those who have had microsurgery and those who have had radiation -- have reported their tumor growing back.
Choosing the most skilled doctor and well-equipped medical facility is arguably more important than the type of treatment you choose. Having the best medical team treating you, in a state-of-the-art medical facility, gives you your best shot at a positive outcome. Practice makes perfect, especially when it comes to any type of brain surgery (including radiosurgery, or radiation).
In the end, I chose CK. But I was still terrified going in for my treatment. It's important to realize that those terrible fears are not prescient. You can be afraid and still have a wonderful outcome. That was certainly true with me. The point I'm trying to make is that you needn't wait until you are comfortable with your choice; that may never happen. Going with your gut means choosing the treatment plan you are least uncomfortable with, then surrendering to your doctors' expertise and skill and letting fate take you on your journey. Do your research, listen to your inner voice, and make both an educated and intuitive choice. Do that, and you will come out of this just fine.
Best wishes,
TW
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Dear Acousticlady,
I'm a Newbie, but you can see the replies come from the very senior members of this forum. I think the advice is fantastic. I was suffering from full spin vertigo attacks which lead me to a ENT doctor and finally a dianosis. I didn't go to this site until 3 months after my surgery and I was looking for advice on my recovery. Having full spins every 5-6 days forces a person to make decisions quicker than others. Having said all of that, if you can wait, than my two cents is to learn as much as you can before making that decsion. I pray that God will guide you as well.
God Bless.
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The ENT that diagnosed me told me that my AN was small and mentioned Gamma Knife. I got on the Internet to research ANs and Gamma Knife. Radiosurgery seemed a lot more simple to me than surgery, so I contacted Wake Forest. The doctors reviewed my films, talked to me on the phone, and I decided GK was for me. It did turn out to be simple, and I am so glad I had it done. I will be going back soon for a follow-up MRI since I missed having one last Dec.
Grace
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There were many reasons for my decision to go wth surgery. I think ultimately it came down to that I just wanted it out so I didn't really need to worry about it anymore. I feel like if I had gone with radiation that I would always be thinking about it still being there and if its stable or not.
~Heidi
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I just recently had gamma knife at Columbia with Sisti. It was the right decision for me. If you live in or near NY go see him. I chose gamma knife because I grilled four of the top experts and there were more risks with surgery. Greater risks. I have a small boy who needs me. I could not take the risk, no matter how small. Additionally, I was told that the possible rate or re-growth is the same with surgery as it is with gamma knife. The only downside to gamma knife is that the facial nerve is fused to the tumor by the radiation and if it regrows the operation is more difficult to save the facial nerve. But you really need to talk to the doctors. I don't know you personal situation or even the size of your tumor. I wish you all the best.
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I opted for surgery even tho my tumor was quite small, for some of the same reasons others said.. primarily for my own mental health, the worry of regrowth after radiation would have been too much for me. I was also worried that at my young age that if they did use radiation, and it did regrow that I would face a more difficult surgery when I was older and less able to handle the stress of brain surgery. Despite the complications I had with my surgery I am very happy that I did it the way that I did.
As many have said, it is a very personal decision and needs to based on several medical factors as well.. age, size and location of the tumor, amount of nerve damage already done, etc..
The day I decided to have surgery and scheduled it was a wonderful day, I finally could look past the decision making process and move on to getting better. I wish you the best of luck on your journey :)
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My neurotologist does both, so he gave me the choice. It's a tough one and though I said there was "no way" I was having surgery, that was my ultimately what I decided. And I've never been sorry.
That said, it's a highly personal choice and you need to do what is best for YOU. Not your doctor, not your mother, not your spouse, etc., - YOU.
I mainly just wanted the damn thing out of my head so that I could get on with my life. I also wanted to know what my side effects would be up front after treatment so I could start dealing with them. Surgery gave me that.
I didn't want to have radiation and have to keep wondering (and monitoring) the AN to see if it was dying. I also didn't want to have to wait for 12-18 months (in some cases) to encounter side-effects.
I'm not a patient person and most things are black or white to me - there is no gray. Surgery fit my personality and I had an excellent outcome.
I also had complete and total confidence in my doctors - neurotologist and neurosurgeon - and I was extremely comfortable with both of them. In addition, I just knew in my "gut" that my choice was right for me.
You'll know when you've made the choice that is right for you.
This is one of the hardest parts of the AN Journey.
Good luck,
Jan