ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: shameless_stud on February 15, 2010, 02:59:21 pm
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Managed to get hold of my latest scan which shows a size of 13.6mm (1.36cm). As discussed in my insurance thread the last week, I'm so unsure what to do in terms of treatment. I'm 25, and the AN is quite small so I have these advantages on my side. I'm feeling really low right about now and I'm petrified of dying - I've got so much to live for.
I feel so alone.
(http://smg.photobucket.com/albums/v302/eccles030/test/MarkBrainScan.jpg)
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Mark ~
Thanks for the MRI scan photo. I 'm sorry you have to deal with an acoustic neuroma at your age (25) but as you noted, you do have choices. Radiation is a viable choice and the risks are small. Most of the alleged dangers of using radiation in young people are based on bias (toward surgery, against radiation), outdated information or just a lack of knowledge. I'm sure you realize that observation is likely your easiest choice, right now. Of course, that involves semi-annual or at least annual MRI scans and the knowledge that the tumor exists and may be growing. Some folks can handle that reality with aplomb and some simply don't like the uncertainty. You make the call on that one, Mark. That being stated, you are in little-to-no danger of dying anytime soon from an acoustic neuroma. They are almost never malignant and unless allowed to grow so large the tumor presses on the brainstem to the point of stopping blood and nerve signal flows, it is not a terminal situation. Try to take a deep breath, stand back and view this from a realistic perspective. Yes, the AN is a problem but no, it is hardly a fatal problem.
Jim
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Dear SS,
I was almost 55 when my AN was found. It was 3.5 cm. I had poor balance for many years. Perfect hearing and no other symptoms. My very smart general practitioner found it with my limited symptoms. I just wanted that sucker out of my head, so I went with the first doctors I visited. I went to the hospital they wanted, even though I had severe reservations about that. I wrote my instructions for my funeral, picked out the music, wrote letters to each family member and decided I was not going to survive. I could imagine surviving such an ordeal. Too make a long story short, I did survive, I have no hearing on my right side and a few other issues. Am I thankful to be alive? You bet. Do you stand a better chance than I did? You bet! You are much younger, with a much smaller AN. There are always risks, but you have so many options available. research, research, research! You have come to the best support group around! Different people have had different treatments and with the size of your AN you have many available. Phyl just did a youtube segment on her experiences with Cyberknife...check it out. Others have had gamma ray treatment and others have had trans lab, mid fossa and restoid. Each has its merits and its drawbacks. You will find the best solution for you. We will all cheer you on, answers questions and be there for you all we can be.
I'll even wear my pirate sox as you go through your treatment choice (check out the good morning thread, you'll understand)
Good luck and I know others will chime in.
Brenda
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As others have said, the liklihood of you dying is miniscule unless it's left untreated for YEARS.. They typically are slow growing and sometimes stop growing altogether. Like Brenda, mine wasn't diagnosed until it was about 3 times the size of yours.
Impressive MRI picture.. But, to give you something to compare it to, here's my diagnosis MRI:
(http://i436.photobucket.com/albums/qq87/bdcphotobucket/Tumor2.jpg)
You have a LONG way before it gets big like this. I survived my surgery as did many, many others. No matter what treatment you choose, you WILL survive it..
Remember our motto here:
(http://i436.photobucket.com/albums/qq87/bdcphotobucket/ANA-black-flag.jpg)
You WILL get through this and you will have an interesting story to tell your grandkids about when you're old. ;)
You aren't alone.. You're among friends... Many of which have been there and traveled this journey ahead of you.. Nobody says that the journey won't be bumpy at times possibly, but we all can say that you will survive to tell the tale of your journey.
Regards,
Brian
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Hi, SS:
I concur with what others have said: ANs are virtually never fatal these days, unless you let it grow for many years unchecked. It would probably take over 30 years of steady, average growth for your small-to-medium-size tumor to kill you. Some ANs reach a certain stage of growth and then stop -- never to grow again. Dr. Derald E. Brackmann (famous neurosurgeon at HEI; he wrote the book on many surgical techniques for brain tumors) told me he has seen some ANs stay the same size for 20 years.
Of course, you can't depend on that happening. If you decide to forego immediate treatment, you must have an MRI every 6 months to monitor the tumor's size. Your MRI shows your AN is not touching your brainstem. So, if your symptoms are mild (and remain so) and you don't mind "watching-and-waiting," you probably have plenty of time (years) to weigh your treatment options.
I was petrified of getting treatment. I chose CK and cried the night before treatment, desperate for any way out of what seemed like a horrible fate. Now, 19 months after treatment, I feel way better than I did before getting treated. CK was a miracle treatment for me. Most other people on this forum feel the same way about the radiosurgery or surgical resection they underwent. We all know how scary it is for you right now; we've been there, done that. And, yes, it's not to be taken lightly. But I think you'll be surprised when you get to the other side of this -- after treatment -- how well you came through it all. I do not speak in platitudes when I assure you that you are going to be okay. Do your research thoroughly, exploring your options. Ask questions on this forum; we're here to help. You're going to be okay. Thousands of people on this forum who have also had, or still have, an AN can testify to this truth.
Best wishes,
TW
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Dear shamelss stud (I like that!)
Here is the link to Phyll's debut on u tube about cyber knife.
http://anausa.org/forum/index.php?topic=11866.0
Just one of many options- wait and watch, gamma knife. Hopefully surgery won't be necessary due to your small size.
Any more details on where you live? You may find people in your neck of the woods who can recommend doctors/hospitals
Big calming breaths. The diagnoses is a shock, but once the shock wears off you will see that there is no rush, since it is slooooww growing benign tumor. And the chances of getting hit by lightning are greater that the chance of dying from this tumor - it'll be OK.We are here for you :)
Maureen
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Thanks so much everyone, this is by far the friendliest place to go on the net - regardless of the reason why we're all hear. You all make sense completely but I'm having trouble adapting and seeing through this fog. My specialist doc says that if it grows much more by my MRI appointment in June/July then they would need to intervene. There must be a reason for this, probably more to do with 'get it while it's small and while and he's young' theory. I need time to think but I am thankful I have the time to research. I'm sure that you guys will help whenever you can.
Thanks again everyone x
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Hey!
I was 25 when I had my AN surgery...seems like yesterday! Not what you want to happen at any age but especially when you are young and living it up! Please feel free to PM me if you have any questions for me!
K ;D
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Howdy,
I am 31 and my tumor was around the size of yours. It is very scary, but when it comes to this type of thing youth is actually a benefit if you decide to opt for surgery. I bounced back very fast from my microsurgery and I believe it is in part due to the fact that I am young and otherwise healthy.
Take your time and make a choice that feels right for you. Being scared is normal, but I can assure you, the chances of you dying from this are very slim. You will get past this and you will go on to have a long and productive life. I am only a few weeks out from my surgery and I already feel mostly normal. This is just a bump in the road.
Lyn
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Hi SS - Listen to these people. They know what they're talking about. Jim is the bomb. He always makes you feel better ;D
I know exactly what you are talking about! When I first found out I had Lumpy, I thought I was going to die. But it is not fatal. Hey, just remember, it's not cancer, thank God, and you're not in chronic pain. Two things to be thankful for. It is a little different for you though. I found out I had this at 48 and you're just a kid. But, you will sail through what ever treatment you choose because you're a kid.
Just find a good doctor. Do that first. I saw the first doctor who told me I could choose radiation or surgery...either way he'd be there (to collect my money). The second doctor at House clinic was anti-radiation. Then I found Dr. Antonelli in Gainesville at Shands and felt 100% better. Ok...95%. I mean Lumpy is still there. He was very up front and told me I could go into watch and wait. The tumor is still small. He was the only doctor to give me that option. And what also impressed me about him is he is the surgeon (Dr. Friedman does the radiation treatments) and he in no way what so ever was anti- radiation. The guys at Shands have a good reputation. That's what you need...docs with good reps.
After much agonizing over the treatment choices, I've decided that if the AN get's bigger, I'm going to have the radiation. That's my choice. Have faith. You will make the right choice.
DJ
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Jim is the bomb. He always makes you feel better ;D
not only is he the bomb, it's his birthday tomorrow! :)
Sound advise given by all here. I think DJ hit it on the head..... by noting the AN is benign..... I tell everyone I got a brain booger that's benign, but just in a bad spot. We have seen many here with much larger AN's (Satman, I believe, holds the current record of 8cm... yes, you heard that right... 8cm AN and he's doing well!)
Sometimes having a smaller AN is troublesome... as we do have options and in life, sometimes too many options can be overwhelming. Now, I'm not going to tout the video on YouTube that Brenda :-* and Maureen :-* noted but........... granted, I look like crap in the video, but you get to see, first-hand, a radiation patient... young, full of life and how I'm doing. So, if you haven't seen it... it may be worth a peek as it does note valuable info, esp for one with options. But, the bottom line is this.... as you can see... we are here to rally for you. We served watered-down drinks, we live our lives, we do as best as we can but...... we strive for tomorrow... and yes, there will be MANY tomorrows for you!
so, you aren't alone. You are just starting a "journey" that you didn't sign up to ride.... but... we all have your back to help make sure you are ok and whatever you do decide about treating the AN (regardless if surgery or radiation), you know we are all cheering you on.
Hang in there. We're not going to let you down... you're stuck with us now! :) (Aren't you the lucky one! ;) )
Phyl
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Vancouver Sue runs up to studly dude standing there, and gives him a big hug and a kiss on the forehead.
"You're not alone," she says. "You have all your ANA cyber brothers and sisters to talk to."
Love,
Sue in Vancouver USA
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Wow guys, thanks for all your support and kind words. I feel so selfish, there's me moaning and not even considering that anyone else has the same thing. I apologise for being so self-centred, it's not normally my nature. Knowing that I can come here to 'cry' makes me feel much better about things. The knowledge you guys retain between you all doesn't bear thinking about, especially with all your experiences with the diagnosis, treatment etc.
I wish I could give you all a hug and a kiss, especially Sue - because I've always wanted to visit the US, especially Vancouver (haha just joking, we'd have to hook up in Vegas instead hehe)
Love to you all xxx
P.S> Thanks Phyl, I will certainly sit down with a brew at the weekend and check your YouTube channel out, look forward to watching your vids :-)
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oh, heck... its not being selfish..... when it comes to our own health, we are certainly entitled to be "selfish" (and keep in mind... its not a bad-kinda selfish.... selfish is only allowed when its a "good" selfish, ie: looking out for our own wellbeing... remember that! ;) )
BTW, I'd like to give Sue a huggle as well.... and many others here!
Hang in there!
Phyl
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Haha!
Oh and before I forget, Happy Birthday to Jim for tomorrow! All the best mate.
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I feel so selfish, there's me moaning and not even considering that anyone else has the same thing.
You're in the very beginning shock-and-awe phase, so it's perfectly normal and understandable to be centered on your own needs right now. We've all been there before. The reason we can give to others now is that this journey has become a lot less of a burden for us as time has passed. You will get there yourself, and soon. Believe me, we're not any more courageous than you; you'll get there, too. You can let yourself feel scared and "self-centered" all you want now -- that's what you need to do to process this turn in your life -- but, trust me, you'll get past this phase and will feel at peace. In the meantime, you can lean on us. And please don't ever feel guilty about that.
Best wishes,
TW
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So SS, I doubt you ever wanted to visit MY Vancouver. This is the one in Washington state, not British Columbia. And sure, let's all go to Vegas!
Sounds like you are from the land of Oz. Always wanted to visit there.
Appreciate the huggles from anybody!!
Sue in Vancouver, USA
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I feel so selfish, there's me moaning and not even considering that anyone else has the same thing.
Just stick around after treatment and pay it forward to the next batch of newbies. For now, the spotlight is on you. ;)
Steve
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Just stick around after treatment and pay it forward to the next batch of newbies. For now, the spotlight is on you. ;)
Us, Posties, should use this as our sig line around here! :) Me likes that one!
SS... just keep us posted on how you are doing..... you KNOW we're cheering you on! :)
Phyl
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One more thing...(I have a daughter your age, so I have to do the mom "advice" thing now) there's a couple of things you can do to make yourself feel better. Eat healthy and stay away from caffeine. The former is just good for you; helps your mental state too, and the later can make you wonky headed. Also exercise. Do stuff that will challenge your balance nerve. Walking is excellent. And here's a little slogan I borrowed from my husband (member of AA, 28 years sober) "One day at a time". Whenever you feel scared, just say to yourself, one day at a time. Nothing bad is happening to me today.
And really, today is all we have.
See, now if you were here, I'd give you a cup of tea and you'd feel better. So go have a cup of tea and throw a cookie in for good measure :)
DJ