ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Russ on November 03, 2008, 06:24:44 pm
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I'm having trouble making a decision -- surgery vs. radiation.
Does everyone suffer all these negative side effects I'm reading about?
thanks,
russ
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Russ - I'm sure you will get plenty of answers as I know of quite a few who write on this board who have had virtually no side effects from radiation. I do not read the surgery posts as much since my husband had CyberKnife a year ago with quite a few side effects mainly from Decadron that was given for swelling. He also had surgery first (4 years ago) and had absolutely no problem with that except for anxiety issues - no one wants to have their head cut open. I do have to add that he was treated for a meningioma right on the top of his brain and that may be different with side effects, etc., than an AN. It is now a year later and the CK has done what it is supposed to - stop the growth of the tumor with some slight signs of necrosis (dying tumor tissue).
Sheryl
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Russ -
every AN patient is different and it's virtually impossible to know what side-effects - if any - you will encounter. No doctor, regardless of the treatment you choose, can guarantee you anything 100%.
I had surgery in May 2007 (retrosigmoid approach) and I don't have any side effects except for SSD (single-sided deafness).
There are times when I have slight balance issues and slight eye and mouth dryness, but nothing that anyone would really notice.
Good luck in making your treatment decision. I found that this was one of the hardest parts of my AN journey.
Jan
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Russ--
The short answer is that not everyone suffers side effects. Chances are that it will depend a lot on what size the AN is and where it's located. I had radiosurgery two years ago, and I think I can honestly say that the anxiety of thinking about the whole process probably bothered me more than any actual physical effects of the radiation. I went back to work the next day, and my life has been pretty normal ever since.
Mac
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Hello russ..... not all radio-patients suffer side affects... some do, some don't... and regardless if microsurgical or radio treatment for AN's, my hope is that everyone educates themselves to fully understand what could happen (not will, but could...)
Phyl
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The "side effects" of my GK is that my tumor is dying! That's the good news. The bad news is that GK didn't take away the symptoms I already had from the AN. Every symptom I have is attributed to having a tumor, not in the treatment of the tumor. Granted, the first few weeks after my treatment, I had side effects from the steroids and the GK upset the nerves that the tumor is growing on, so that I experienced facial sensations such as feeling sunburned and wave-like nervy pains that made me think of the Northern Lights - only on my face! But that's because my facial nerve was very angry. Other CK-GK patients haven't reported feeling any of that. But that went away, and, like I said, everything else is because I have a tumor on those nerves. At least that's what I think. Some people walk away with very little problems, and then it is just on a sliding scale from there. It just depends on how big your AN is, how involved it is with all the nerves in that area, location, location, location, and, probably the skill of your medical team.
This is the hardest part of having an AN - choosing the best treatment for YOU. It's a big decision. All you can do is talk to as many doctors as you can, get opinions, get the best medical team that you can and eventually the right procedure will feel "right" to you.
I wish you all the best,
Sue in Vancouver, USA
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Hi, Russ - and welcome to the forum.
The decision on treatment is always difficult but it should be made with all the knowledge you can acquire as well as input from doctors and other AN patients (available here). Both surgery and radiation carry some risks. When dealing with acoustic neuroma, there are no guarantees and every patient has a slightly different experience. I underwent retrosigmoid surgery, then FSR (radiation) and came out practically whole, with no real problems. See my signature for more details. However, others are not always quite as fortunate. This is the dilemma...if one treatment were fool-proof and came with a guarantee, we would all go with that and there would be no decision to make. Alas, that is not the case.
You must realize that this is a support site for AN patients and their families. Thus, the amount of AN patients posting with problems to deal with, post-surgery or post-radiation, is somewhat skewed. The majority of AN patients that experience a good outcome with no or minimal issues to deal with often abandon this website and these forums because they don't need 'support' or advice anymore. Some of us diehards stick around in hope of helping others, like you, who are dealing with an AN diagnosis and are a bit confused, scared and/or uncertain as to how to proceed. We try to assist by offering information (not medical advice) and support for your decisions. We understand the anxiety and concerns the newly diagnosed AN patient feels and we respond with empathy based on our own hard-won experiences as AN patients. Our membership has a lot of collective wisdom and advice to offer. Just ask.
Please continue to read and post, as you feel the need to. We'll be here. :)
Jim
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Hi Russ,
Welcome to our group. I am sorry you have an AN but I am glad you found this site. It has been so good for me.
This is the hardest decision and a personal one. I had a couple of issues before CK and I have them a little worse rignt now at 5 months post CK. BUT I am a VERY weird CK postie, because I did not have fractionated CK, I only had ONE treatment making it more strong. (MY choice) I have not regretted my decision at all and know I will get to the other side. I know an AN patient here that had a larger AN than I and had the 3 day CK and is doing fabulously. Many people doing great are not as apt to post. As others have said, everyone varies so it is probably really hard to know. My doctor gave me a LOT of information about ALL my options. He told me the good and bad of each and did not encourage me one way or the other. I did a LOT of research and decided this was best for me. I wish you well.
Mary 8)
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Thanks to all who replied to my post. My wife and i went to an AN meeting this weekend where there was a guest speaker talking about balance issues. The host was wonderful and the speaker fantastic. I was able to do my own polling and got many differing opinions. My wife and i were able to get So much information regarding the side effects from CK /GK / Proton and the many different approaches for treating AN! I will be back in touch and will post again if i have any additional questions.
Again my sincere thanks to all!
Russ :-\
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Hi, Russ
We met Saturday at the meeting. I wanted to wish you good luck in making your decision!!!
I also just sent you a PM on my current treatment progress.
Elaine