ANA Discussion Forum
General Category => AN Issues => Topic started by: Lesliegc on June 13, 2011, 09:06:37 am
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I was just diagnosed with AN, after 4 months of dizziness (MRI and evoked potential test). The tumor is small, 4mm by 9 mm, and after reading up on stuff, this seems unusual--I don't have any hearing loss that I notice, but I notice my balance problems all the time, with the dizziness, maybe because I am a yoga instructor. I've just begun to wade through the information and feeling really overwhelmed and sad and worried I will never feel like my old self again. I guess I am just hoping to hear from anyone who has had similar experience to date. The neuro called me 2 days ago....he is going to talk to the neurosurgeon then call me back, but I've been told that a neurotologist is really what I am looking for. this is my first foray into participating in an online forum/message board. Although I wouldn't elect to be part of this particular club, I am really relieved to find this place.
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Lesliegc ~
Hi - and welcome. Trust me, none of us wanted to have a reason to be here but, as you've learned, we do try to help and support each other. I'm pleased to learn that the website/discussion forums have been helpful to you. Your AN is small but the sooner it's addressed, the better, in terms of retaining your hearing /balance and avoiding nerve damage that can have a deleterious effect on your quality of life. Upon discovery, my AN had grown to 4.5 cm, so I cannot offer any relevant information from my perspective - but many other forumites can - and will, I'm sure.
Jim
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Thank you, Jim. It feels good to be welcomed. Your experience sounds involved and difficult...I do feel blessed to have caught on so early that something wasn't right. I can see I am just at the beginning of my journey. I'm so glad there are people whose experience and feedback I can draw on.
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Leslie ~
Actually, my AN experience went quite well. I was blessed to find a very experienced neurosurgeon with decades of successful AN experience and, later a brilliant radiation oncologist. My 9-hour surgery 'debulked' the large AN (to 2.8 cm) and severed it's blood supply. I suffered no facial paralysis or other complications and my symptoms disappeared immediately after the surgery (I remained SSD). I was discharged from the hospital barely 5 days after my surgery. My recovery was swift (I was driving again within 2 weeks - with my doctor's approval) and I was back to my usual routine soon after that. 90 days later, in a pre-planned procedure, I underwent 26 daily FSR (Fractionated Stereotactic Radiosurgery) treatments, intended to destroy the remaining tumor's DNA. They were completely uneventful (but tedious). My last MRI scan indicated the AN showed necrosis (cell death) and some slight shrinkage. Today, I'm doing great - with no real residual problems. My AN experience is a good one, all things considered, but not necessarily an anomaly. I trust you'll have a similarly good outcome to whatever choice you make to address your AN. We're a friendly bunch. We don't second guess and don't play judge but we will help, inform and support you as you travel on this journey that none of us ever wanted to take. I think you'll be glad you found us.
Jim
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Hi Leslie,
Please don't panic, you will get through this and we are here to help! My tumor was just about the same size as yours. I was on the watch and wait status for 5 years before making my decision. I chose to have surgery. I just happen to be the same age as you (29 and holding) also when I had my surgery :) I had a very successful outcome, no paralysis and I retained 85% of my hearing. There are many positive outcomes out there, it's just that sometimes life is so busy, we don't take time to post. I am on the "willing to talk list" if you would like to chat or email, I would be more than happy to help in anyway I can. I wish you the best on your AN journey whichever route you chose to take. Ann
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you probably have some time to make a decision. I am fine. I went to House in LA..they are experts!
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Welcome to the forum (though unfortunate it may be to have to come here), I was just diagnosed in March and already had Gamma Knife surgery. The worst part of this whole thing is deciding what to do. Good luck with your consult and making your decision. This forum has been a real help to me and I'm sure it will be for you too.
Cheryl :)
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Leslie .....
Adding my welcome to this forum and to reassure you, we are here to help support you as you seek answers for the direction you should go.
If you have not already done so, please send for the free ANA informational materials. See: http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195 These booklets contain a wealth of information and much reassurance.
The one thing we all feel is essential is to find an experienced medical professional or professionals in treatment of ANs specifically for opinions on treatment options (or to wait and watch). This is one time where experience does really matter to a successful outcome.
As you can see in my signature, I have had two surgeries for my AN ..... both at highly respected facilities. Many smaller ANs are treatable with radiation therapy. My situation was very unusual with a childhood exposure to radiation so I was not a candidate for radiation therapy. I am doing well now.
Let us know how we can help ease your stress level.
Many thoughts and prayers.
Clarice
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Thank you, thank you, Clarice, and everyone. I will order the materials and am so grateful for the support, and the willingness to share your experiences is incredibly valuable to me so, broken record that i am THANK YOU!!
Leslie
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Hi Leslie
You've come to a haven and a soft place to land that's for sure. Here on this site you can search out anything and everything that has happened to us all and we eagerly give the information from our hearts.
I wish you all the best of luck on your journey and welcome you to the site that no-one wants to be a member of but is grateful to be (does that make sense? :P)
Warmest wishes,
Suu xxoo
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My tumor was 6mm. I had it removed in October 2010. All i can recommend is think long and hard about what you are going to do.
My surgery, they removed my hearing nerve and my balance nerve. So a regular hearing aid wont work for me...and Im still trying to feel "normal" again. (strange feeling s i my head, headaches, and wobbly walking-mostly at work) My hospital stay was long..10 days.
If I could go back in time, I wouldnt have the surgery. I would opt for the gamma knife. I just wanted to get the tumor out of my head and not have to worry about it again.
so just do a lot of research...and make sure you think of the cons too...cuz even though you hope for the best, things just dont go your way...or the way you hope.
I dont mean to sound all down and depressed. :-X
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My first symptom was the wonky feeling you described. Then my hearing started going bad. I met with two surgeons, and one wanted to do radiation, and one wanted to do surgery. I found this forum in December 2009, and sent private messages to members that live in and around central Texas, and I digested their experiences, and decided to have surgery. One of the people NOT on this forum advised me to have radiation, because her surgery was FUBAR (old military term) and she thought she would never be normal again. Well, two years later, she is on top of the world, has a BAHA, and has no regrets about the surgery.
I even picked my surgeon from private messages with members on this forum, interviewed him, and he did a wonderful job.
What ever you decide to do, you must know that this is a SLOW recovery, and it will take a while for you to feel like your old self. Don't let someone here, who had a bad experience with any type of treatment, have much impact on you. You also can't expect someone who had a great experience influence you much either. Interview several doctors, read this forum top to bottom, ask stupid questions, and you will draw your own conclusion. You will feel normal again...it will just take some time.
James
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Heya Leslie! I wanted to add my welcome to this unique group. I can't think of anything else to add other than don't think this is the end of the world for you. Your AN is indeed small enough that you have lots of options to deal with it. I can't tell that it will all be great because of the smallness of your AN because everyone is different in their reaction to the treatment of it, whether by surgery or radiation. But, please please feel free to ask away any nagging question you might have, there's a plethora of experience here that can help! Take care and good luck in your research!! :)
Jay
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Leslie
I am in the early stages of figuring this all out and see that you are going to HEI on July 25th for a middle fossa removal. My tumor is still small 7.5 mm X 8.8 mm X 5.9mm, i still have serviceable hearing and want to save it. I see you live in New england like i do and want to know how you decided to go all the way out to HEI, and why middle fossa? It seems the more i read, the more questions i have. I am going Saturday to the support group meeting at NYU and next friday for a second opinion. Yale told me Gamma Knife was my best option. Can you share your decision making process with me? And, first and formost GOOD LUCK on the 25th, I will be thinking of you.
Thanks Henry
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HI Gang, Just diagnosed myself in April. Having my surgery at Duke-Wake Med in Raleigh on Aug 23 w/ Fukushima. I have 4 drs tell me to do nothing and then had Dr F give me some pretty remarkable %'s of what my possible outcome will be. Long and short of it is do your research and see a Dr who has done successful surgeries for this. Practice really does make perfect, or at least almost perfect. ::) I will post on my surgery outcomes and feel free to message me on my research and Dr's that I am using. I am happy to share!
regards, Cindy
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Hi Henry; It seems like I was just where you are not that long ago....
I met a woman who lives here near me who went through this a couple of years back, and when she went to the ENT surgeon at Dartmouth, her husband asked him where they'd go if it was his wife, and the surgeon didn't hesitate when he said HEI in LA. I talked to Dartmouth, and then Dr Friedman in LA, and after my conversation with Friedman, canceled my appt at Mass General with some other doctor. The process was going to be really drawn out elsewhere, Dartmouth didn't inspire my confidence, and my understanding (and feeling after talking to him ) is that House Ear is simply the best. I am dreading the long haul out there, but my peace of mind made it worth it, for me. Plus we used to live in San Diego so will go down there between pre-op day and surgery. To be honest, I only considered the gamma knife thing for about 2 minutes. It just wasn't the right choice for me, but if I had decided to talk to docs who favor that treatment over surgery, I might have felt different. Some of the info about gamma knife is I'm sure he said/she said, but for me, I'm relatively young, I want this thing OUT of my head, and radiation gives me the wilies. I live in northern VT; you? I will let you know how it went after surgery; I'll either post here or on a carging bridge site (if I get my act together). Best of luck to you; I will say that though it was an agonizing decision to grapple with, I got great feedback at this forum and connected with some really helpful people, and I have felt a lot of peace since the decision. I think it's better going into the surgery or whatever, feeling peace around your decision. Thanks for thinking of me on Jul 25 :). Leslie (also feel free to PM me--happy to help in any way)
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Leslie
Thanks for responding back so quickly and being so open about your decision process. I live in Connecticut and love Vermont, especially Killington and long Trail Brewery. I totally understand the "I want this thing out" you feel. The first Neurosurgeon i saw told me i would loose my hearing if i took that approach and seemed sooooo bored that i only had an AN. Hopefully i will get some more info this weekend when i attend the AN support group meeting at NYU. Next Friday i go to another Dr. in Hartford and hope to get another hearing test done. After that i think i will take the advise i received from this wonderful forum and the thoughtful people on it to send my MRI and Hearing test off to HEI for an evaluation. Yesterday I started having issues with liquids tasting bitter, it just keeps getting more interesting! Keep us all posted on how you are doing and how you make out. HEI is sounding more and more like an option, if i can just get past the whole "having my brain opened up" thing.
Thanks again.
Henry
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Leslie
My thoughts and prayers are with you today. Good luck and god bless.
Keep us posted.
Henry