ANA Discussion Forum
General Category => Inquiries => Topic started by: lifeofbrian on January 25, 2010, 01:42:42 am
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Hi. I am having a hard time deciding what treatment option to choose, like most of you I'm sure. I lost my hearing in my right ear years ago and the CT scan showed nothing at the time. Recently, I have had facial numbness. I had an MRI and Happy New Year, I have a brain tumor. It is AN 2.6cm x 2.0cm. I have lost my hearing forever but I would like to feel my face again :) . I would like to relieve the pressure that the AN is putting on the facial nerves. If I choose the GK or the CK from what I have read, the tumor will swell and then maybe reduce in size, maybe. That wont help the pressure situation. If I have surgery , who knows what might happen. I may not be able to feel anything. If anyone has any thoughts, then please respond.
Thanks!!!
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Brian -
first of all I recommend you contact the ANA for their informational literature. It will explain a lot about ANs, your options for treatment, and the possible side-effects of each. They will also send you a WTT (willing to talk) list that will be very helpful.
A tumor your size generally means you have the option of surgery or radiation, and the choice is a personal one based on what you think is best for you. The doctors you consult with will also have their opinions which will help you in making your decision.
Swelling is common with radiation, but in the end the majority of ANs stop growing and die (aka necrosis). Sometimes the AN doesn't stop growing and die and in that case you'd typically have to have surgery to remove it. There are other side-effects associated with radiation, just as there are side-effects of surgery.
I had surgery, and while you are right, you don't know what might happen it's a very good option for some. It was for me. My only permanent side-effect is SSD (single-sided deafness) and it sounds like you've already got that issue. My SSD has been helped tremendously by a BAHA; there are other options available.
You need to educate yourself on both types of treatment and then make your decision. Make sure you consult with doctors who do both surgery and radiation - some do both, some don't - but basically you want a well-rounded medical opinion. We can give you our thoughts on what you should do, but in the end it's your choice. We'll support you regardless.
Jan
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Hi, Brian! Glad you've joined us...are you David's co-worker? I'm in the Atlanta area also - I sent you a PM with my phone number and info about our next support group meeting, in case you'd like to join us.
I second everything Jan just told you! The decision making process is the hardest thing, but you're in a great place with a great group to help you along the way.
Hope to perhaps meet you next month,
Cindy
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Hello and welcome, Brian ~
I'm sorry you received such a lousy New Years 'present' but I'm glad you found the ANA website, decided to register and post your question.
My advice is simple: read Jan's post (#2) and follow her suggestions. She covered all the possibilities and I can only echo her assertion that we'll support whatever treatment choice you ultimately make.
Jim
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Brian,
All good advice. My two cents, avoid surgery at any cost. I had a left Translab to De-Bulk a nearly 5 cm in diameter AN just so I would be a good candidate for CyberKnife Treatment. I was hospitalized for three (3) weeks after surgery which included time in rehab. I completed CK earlier this month on the 3 cm of Tumor that was left behind on my Brain Stem during surgery on July 30th, 2009. It was left due to proximity to the brain stem and nerve involvement which precluded any more being removed via surgery.
Again, one man's opinion here, avoid surgery if you can...I'm in far worse shape since surgery...all the common side-effect...facial paralysis, swallowing difficultly, bum left eye that has required four procedures already...got it all. I've been deaf for a few decades now and left the hospital without a Left Vestibular Nerve. Your Tumor is relatively small and should respond well to CK. I'm in Atlanta too. Had my Surgery and CK at Kennestone in Marietta. I hope you take Cindy up on her offer to join us at our group meeting next month. Don't be scared by my story, the ride wasn't any fun but the results are certainly better than the alternative.
I'm probably going to get reprimanded by the Hero's around here for my bluntness...oh well...!
You're in my thoughts Pal.
Take Care!
;)
Doc
Always Blogging: www.wonkyhead.com (http://www.wonkyhead.com)
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Okay, I couldn't let that one pass.. Doc's opinion is one person's opionion about surgery.
I sit here as a product of surgery and aside from being SSD, I'm certainly no worse after surgery; in fact I'm better. I'm not pushing you into deciding surgery versus radiation or vice versa. You need to come to your own conclusion about treatment choice based on what works for you, comfort level with the doctors that would treat you, and size and location of YOUR tumor. No two ANs are alike... no two AN patients are alike either.. with that in mind, you come up with the choice of treatment that works for YOU and YOUR TUMOR. In my opinion, surgery is not something to totally discount for fear of the unknown.. You get that same unknown with radiation as well.
Jan did a good job of going over the various treatment methods available so I won't attempt to say it all again...
Welcome to the forum...
Regards,
Brian
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Okay, I couldn't let that one pass.. Doc's opinion is one person's opionion about surgery.
And I was perfectly clear on that point...MY OPINION...only!
Doc
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Brian,
I can't (and won't try to) say it any better than Jan, but I wanted to add one thing that helped me immensely during my research - don't be afraid to just walk away for a day or two. There is so much information and so many widely varying opinions that it is easy to become overwhelmed. Sometimes the best thing to do for a few days is nothing at all. I did this and it made a huge difference.
Best wishes,
Dennis
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Pooter beat me to it, but I also was going to say Doc B's opinion is just his opinion. And in all fairness, Doc B did say that in his post.
I had surgery and I've never regretted it one day of my life. Even though (like Pooter) I am SSD, I made the right choice for me.
I've also never regretted having BAHA surgery after my AN surgery. In my opinion, it's one of the best things I've done in recent history. It's not for everyone, but it was definitely a great choice for me.
After doing your research, Brian - go with your gut.
Jan
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As you can see Brian, everyone has their own personal feelings about which way to go...unfortunately when you talk to the doctors it is the same with them. I saw two different doctors who suggested doing a trans-lab (guarenteed hearing killer there!) and then another doctor suggested doing middle fossa...he thought my hearing could be saved. So I went with that doctor knowing that the worst that could happen would be that I would lose my hearing anyways but if there was a chance..well..why not? In the end, I was lucky and they saved my hearing. Of course, every person's case will be different...as Jan said, in the end trust your gut and go with what feels right. And don't ever second guess that decision IF it feels right! Good luck and please continue to ask questions or just vent!
Jay
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Okay, I think we have established that it was just Doc's opinion. ::)
Brian, I think you are at the point where you need to consult with a surgeon to see what they think about your chances of having facial nerve issues, and also consult with a radiation oncologist to see what they think about the same question. It could go either way, and only a doctor looking at the MRI can give a meaningful assessment of what the chances are in your particular case. It may turn out to be a better prognosis than you think for both treatments.
Also take heed of what Dennis said, and try forgetting this thing for a day or two. It does wonders.
Best wishes as you work it out.
Steve
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Brian,
Listen to Steve, he's the smartest guy on the forum; in my opinion! That Blue Watch-Cap covers a very, very level head! Pay attention!
Thanks!
;)
Doc
AKA: Not so level headed and quite opinionated!
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Brian,
Welcome to the forum!
Need some more female vibes coming in!!!!!!!
IMO, this forum is a great place to vent, seek info, advice (yes, do take a break from time to time).
I didn't even join until AFTER all my fun and games- probably would have scared the bejeesuz out of me!
Surgery was my only option. I had a sneaky insidious AN that had been lurking against my brainstem for who knows how long, so my results were not the norm.
We are a great sounding board, so don't be afraid to ask anything. No question or concern is too trivial or silly. You should be able to tackle this thing either way you go. Any brainstem involvement?
If not, then CK,GK or an excellent option, (IMO) ;D
Maureen
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lifeofbrian,
Forgot to ask: Are you a Monty Python fan? If so, I'm sure you've seen Life of Brian......
Moe
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Hey Brian-
I see you've already been warmly welcomed by my fellow AN-ers, but I did want to add my welcome. I know that this is all probably very overwhelming right now - it certainly was for me right after I was diagnosed. After all, who among us ever thought we would have a brain tumor!!??
My best advice - gather information, talk to several medical experts. The choice between radiation and surgery isn't one to be made lightly, so give yourself time to process the information.
Debbi
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Thanks everyone for your opinions, experiences and advice. I don't usually have much time to be online, so I'm sorry I haven't posted sooner. I am a Monty Python fan from way back. I do think it is a good idea to step away and take a fresh look at the circumstance. I have not been able to sleep and I have just got to settle in, get a game plan and then execute it to the best of my ability with no regrets. I really appreciate all of you for taking the time and replying to my post.
Thank You!!!
Brian
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As you can see Brian, everyone has their own personal feelings about which way to go...unfortunately when you talk to the doctors it is the same with them.
Brian -
I just wanted to note that this was not my experience. My neurotologist - only doc I consulted with - does both radiation (GK) and surgery and told me the choice was mine. And it truly was. In fact, he refused to tell me what to do - as much as I tried to get him to make my decision. Yes, I'll admit I was looking for the easy way out ::) In the beginning it was very frustrating, but in the end, I appreciated him more for it.
Taking time away from the Forum to digest everything and make your decision is very helpful. At times the posts can get extremely overwhelming.
Doc B -
I thought you were going to say that I was the smartest on the Forum ;) - but then I noticed the word "guy" LOL
I am quite opinionated also - as everyone knows - and I don't think either you or I need to apologize for that. I am not always level-headed (that would be my partner in crime, Lori) - I tend to wear my emotions on my sleeve especially when I'm passionate about something like ANs and BAHAs.
Opinions and experiences are what the Forum revolves around and oftentimes the words "IMO" mean a whole lot in a post. We don't always agree with each other - and I especially like to play devil's advocate just to spark discussion ;D - but if we respectfully disagree there's no harm done.
No offense was meant; sorry if it was taken.
Best,
Jan
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None taken Jan...! I also happen to be retired Military where we had a saying about opinions...ha! Anyway, always fun to share and, definitely to agree to disagree...I for one love the banter!
Take Care!
;)
Doc
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Yeah, I'm a banter-lover, too.
I know the saying about opinions, and I also know one about when you assume ;D
Glad you weren't offended.
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I almost forgot the "assumption" thing...I'm good at that...ha...nice call!
Take Care!
;)
Doc
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Hi all. I have made a decision on my treatment. I have scheduled the GK for Feb. 11th. Pray that I have made the right decision.
Thanks,
Brian
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Brian,
Wishing you a great outcome for GK and a peaceful calming to help you know that you have made the right decision. Bless you,
Jackie from Oregon
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Brian -
if you are confident in your decision and comfortable with it, then it IS the right one for you.
I took the liberty of putting your GK date on the AN Calendar.
Prayers and good wishes,
Jan
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Good Luck Brian...I'll be thinking of you on the 11th!
Take Care...remember, happy thoughts!
;)
Doc
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If you are confident in your decision and comfortable with it, then it IS the right one for you.
Brian, I agree with Jan on this. Right on, Jan!
You can't guarantee your outcome, no matter what you decide to do. You can only make the best choice available to you, based on what you have learned and what you feel in your gut. Once you have done that, all you can do is sit back and find out what happens.
Best wishes for an excellent zapping. 8)
Steve
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Thanks Jackie, Jan, Doc and Steve for your kind words. I got a little emotional the last time I came here. When I write , my soul seems to be in my fingertips, if that makes any sense. I will surely let you know how it turns out and maybe my experience can help someone.
Thanks again!
Brian
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Good luck with GK on the 11th. I hope you have as good an experience as I had.
Grace
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Welcome to the forum...Glad that you found this informative spot...We are all here for you....Do not be afraid to scream ,cry ,ignore us,ignore other people,laugh hystericly,comment,Gripe state your own oppinion..state some one elses opinion.....basically do n say what u feel. ;D
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Some great advice from above and i can only re-iterate that you get second and maybe third opinions. My preference is radiation but given you already have facial nerve issues, you need to get exact info from your docs about the risks and potential success of both options. You'll need to ask them whether they can get it all out or will they leave a residual.
cheers
Laz
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Brian, I had numbness when I finally got my diagnosis, and sad to say, it didn't go away after my GK treatment. My trigeminal nerve is doing a tango with the AN and thus, it shall be, forevermore. It would be a toss up if I could get rid of one thing - the numbness or the tinnitus. The loss of hearing isn't even in the top 2! ha Even though I'm grateful that I had GK and didn't have to go through surgery, I'm always going to wonder if a good surgeon would have made that issue better. I suspect the tinnitus would still be around, and of course, my hearing was already shot by the time of treatment, so that wouldn't have changed. But it's highly annoying to go through life with this "sunburned" feeling face, the taste in my mouth and the burnt tongue thing. So, I sympathize with you very much. Knowing what I know now, I'd probably still chose GK, tho. But, your AN is larger than mine is. At 2.6 cm, you might have more trouble with radiation. I wish you all the best.
Sue in Vancouver, USA
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Brian! Thinking of you as you get ready for Thursday...let us know how things go, ok?
If you're really feeling great, would love to see you at the Support Group meeting this Saturday - you'd be an inspiration!
Cindy
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Good luck on Thursday, Brian! We'll all be waiting anxiously to hear how it went.
Debbi
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Sorry to hear about your new Dx of AN. I chose GK instead of surgery for a 3cm size AN because I did not want the possibility of losing left facial function. I ended up losing some function any way. I never experienced numbness of the left side of my face. Sometimes we become paralysed with fear in regards to things we can't control. My only suggestion right now that I can offer you is to do the homework to get as knowledgable as possible and ask alot of questions. In the end, you make the decision that you are comfortable with and don't second guess yourself.
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Good luck, Brian.
I'm confident things will go well tomorrow.
Jan
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Hello to everyone out there. I am writing :) I have survived the GK procedure with no complications. The GK team at Saint Joseph's in Atlanta were superb. I am so greatful for everyone's input and to the medical team of Dr. Steuer, Dr. Possert, Dr. Carter and Rebecca ( Nurse and coordinator ).
Only time will tell if I have made the right choice. God only knows! I still feel a great deal of relief ! It is difficult to sit down with your spouse and children not knowing the future. It is a routine procedure, but not so routine, if you know what I mean. I will keep you posted on my recovery.
Brian
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Congratulations...than we'll see you at tomorrows ATL area group meeting! Probably not? Great to hear you're doing well and don't worry, it actually gets much easier over time. I had CK last month at Kennestone in Marietta. That after Translab Surgery in July 09 to debulk a monster AN...not a fun ride, but I'm in the saddle doing fine and you'll be fine too...always happy thoughts as Nancy would say!
Stay positive and keep the family close...the support is a must.
Take Care!
;)
Doc
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Congratulations on your successful procedure, I just had my GK on Wednesday so I know what you mean by "routine procedure".
It is sense of relief. You will be fine. Good luck in your future MRI's. Bryan
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Brian (and also to Bryan).
congrats on becoming a "toastie postie" (radiated post-treatment). Well done! I know St Joe's in ATL is a terrific hospital (have passed through the ER there a few times... my nephews and niece were also born there) and know that you were in good hands.
Relax... be well.. and updates from fam on Northside of town... pls be careful out there. Following the weather updates from ATL. Boston is sunny and nice today! :)
Congrats for completing GK (to both B's)
Phyl
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Hey, Brian!
Congratulations on a successful GK procedure! It's obvious that you're relieved to have this behind you - and we can all understand that. May you now enjoy a tumor-free life!
Jim