ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: ANrookie on September 27, 2009, 03:38:45 pm
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hi everyone,
i was diagnosed with an acoustic nueroma about 3 weeks ago. i got the call from my primary doctor while i was at work. she calmly stated that my head MRI showed a 1.5cm x 0.95 mm growth in the CP angle area on the left side of my head. i was numbed by the news. my first thought was, "omg i'm going to die." then i calmed myself down and started doing research on my condition. my boyfriend stumbled upon this site and made an account for me. the support on this site is amazing. i would NEVER wish a tumor on any one, but i am comforted to know that i am not alone on this journey. i've consulted with 3 neurosurgeons so far, 2 advocating GK/ CK and one strongly advocating surgery (all 3 said i would be a great candidate for GK/CK or surgery given my age (34 y.o.) and tumor size. i still have two more consultations coming up in the next few weeks, one with Dr. Giannotta at USC and the other at the HEI. i agree that the decision making period is tough. every day i go back and forth between GK/CK and surgery. hopefully i will decide on a tretment course that is best for me...although everyday a friend or family member will try to impose there preference on me. i know in the end it is my own decision and i have faith that everything will be ok in the end.
best regards to everyone on this site!
take care,
cathy
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Hi, Cathy - and welcome!
You reflected the feelings of all of our members when you stated that you wouldn't wish a tumor on anyone but that this site and, specifically, the forums, help you realize that, indeed, you're not alone.
You appear to be doing your research and having consultations with good doctors, which is commendable. No one should be imposing their treatment preference on you and I trust you'll politely ignore those who try. We gladly answer questions and offer advice when solicited but we are here to support, not impose our preferences. This is a tough decision you're facing and we're eager to help you make it intelligently and to support that decision, once made. AN's are relatively rare and we're unique individuals. There is no perfect treatment and what you chose will be right for you. I have faith that your faith in a good outcome will be rewarded.
Jim
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Cathy .....
Welcome to this Forum of kind, caring, supportive, fellow ANers! It sounds like you are on the right track with all of your research and consultations. Be sure to take time out to breathe and reflect on all the of the input ..... it can quickly become overwhelming. At some point in time you will know what is the right decision for you.
Keep us posted as you progress through this decision-making phase.
My thoughts and prayers.
Clarice
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Hi Cathy,
Welcome. Sorry you have to go through this, but happy to tell you that you'll survive! I completely understand the overwhelming feelings when you first find out (went through them all.......scared I was going to die, scared my personality would change, angry that I was 'chosen', frustrated at why something so HUGE and not something minor to be 'tested' with.....you get the idea). The most emotional and difficult time for me was after diagnosis and during the 'research' phase. Everyone and every specialist seemed to have a different opinion on what should be done. The decision is a very difficult one, but I'm hoping that once you meet a neurosurgeon or specialist that you trust, you'll know. If/when that happens, you feel more confident with your decision and can move forward with whatever it is, in a more peaceful way. All of your energy will be focused on getting through it, and not spent tossing and turning the different options and outcomes around in your head. I really hope that happens for you soon. I'm a similar age as you (36) and just went through this 4 months ago. I'm happy to report that life is back to normal completely.
Good luck. Yes, glad you found this forum, it's a wealth of information and knowledge.
(hugs)
Adrienne
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Hi Cathy,
Sorry that you had to seek us out, but so glad you found us! I'm a relative newbie here, too, having just been diagnosed in July and only started posting within the past couple of weeks.
Before I found out it was an AN in my head, and only knew that I had a 4mm "growth" in my head, I had the same freakout moment (actually, my moment lasted a few weeks until I could pull my records). I spent a whole weeklong summer vacation wondering how the interloper in my head was going to affect me. Since I have a rather vivid imagination and had the luxury of free time on my hands, I started thinking things like: When they take this thing out, will my IQ drop (it doesn't have far to go)? Will I lose my ability to alienate everyone through the dark gift of sarcasm? Will I even remember who & what I like/dislike? Do I need to make a list of people &/or things I like/enjoy/want to remember? And, if so, should I intentionally leave anyone off? ;D
By the time I could find out it was an AN, I was actually relieved!
Glad you've been able to line up plenty of consultations, and good for you for knowing it's ultimately your decision. (You can always tell family & friends to go and grow their own tumor if they want to make that choice, but that's a little on the snarky side. 8) )
Best wishes, and glad to meet you.
Michelle
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Hi, Cathy and welcome ;D
The Forum is a wonderful resource, but you should also contact the ANA for their informational brochures - they're wonderful resources also.
Good luck with your decision - being in California, you have the "luxury" of having the pick of many very qualified doctors (who do radiation and surgery) right in your own backyard.
Best,
Jan
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Howdy from Texas! Just wanted to welcome you here - ask any questions - that is what we are here for!
K ;D
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Hi Cathy and welcome.
First, you are SO very lucky to have a boyfriend helping with the homework. Sounds like a keeper to me! :)
As you can see, everyone here is ready to help with sharing info, experiences, etc to help with your homework process. Key is this..... the AN is benign (keep reminding yourself that).... it's just a benign growth in a lousy location BUT, it's completely treatable and we're here to help you get through it. Take your time in the research as your situation is not emergent. If researching becomes too overwhelming... take a step or 2 back to catch your breath. It's ok.
Again, welcome. Good to have you here. We'll help anyway we can.
Phyl
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I would like to chime in and say hello as well. The "Am I going to die?" question was the first thing I asked my neurosurgeon too! Completely normal to feel overwhelmed at this point, but as all the others have said this is benign and treatable! You will make it through. Our bodies are amazing machines. Take your time making your decision. There is no rush. You will find peace at some point in this process and then you will know! It is great that your boyfriend found this forum for you. It covers a lot of topics. As Phyl mentioned, read up then take a break. We understand. Alicia
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Hi Cathy,
Sorry you had to hear about your AN over the phone and at work no less! That must have been really difficult. My ENT made me come to his office for the news. At least there I had a private room to absorb what he told me and he stayed with me until all of the questions I could think of were answered, including “am I going to die� The beginning is definitely a roller coaster ride of emotions, but as others have already said, you will get through this. My brother was the one who found this forum for me and I have to tell you…. It was a lifesaver for my husband and me (Rich56 - he is a member on this site as well). I’m glad your boyfriend found this forum. This is a wonderful place to get support and answers to some of your questions. You are never alone here.
Scarlett
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Hi Cathy,
I, too, heard the news over the phone...just as I was pulling into the parking lot of Office Depot to get some school supplies. I remember thinking at the time that if the dr. himself called me, it wasn't going to be good news. I still think about that every time I go to Office Depot! He told me to get on the internet and find out everything I could about ANs. I did, and found myself here, just as you did, and believe me, you couldn't have fetched up in a better place! Words of wisdom, people experienced in interpreting "med-speak," humor when you need to laugh so you won't cry--it's one stop shopping. The bonus is, you get to hang around for as long as you like, and you WILL like it. The people here are going to be your new best friends.
Stick around...it's habit forming! :D
Priscilla
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hi everyone,
i would like to say "THANK YOU" for all your heartfelt words of encouragement. i truly feel you are all some of the strongest people i know. this battle is tough and i'm comforted to know that you all made it through. i still have a long road ahead of me but knowing that i have the support of my family, friends, AND now my AN family on this forum i know things will be ok.
i will continue to update you on my journey to choosing the right treatment for myself. today i had an audiology test done to see if or how much hearing i've lost in my left ear. to my surprise hearing in both ears pretty much the same. this is surprsing to me because after i was diagnosed i really thought that my hearing in my left ear ahd gotten worse...i guess it was all in my head...but then again IT is in my head :)
take care,
cathy
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I still have a long road ahead of me but knowing that i have the support of my family, friends, AND now my AN family on this forum i know things will be ok.
Yes they will be, and that's why we're here. :)
Welcome, Cathy, and best wishes.
Steve
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i truly feel you are all some of the strongest people i know.
Cathy -
I can't speak for others, but having an AN and getting through it proved to me how strong I am. I didn't realize it before I started this journey though.
You will be amazed how strong you are.
Best,
Jan
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...you get to be strong & don't even have to eat spinach!!
K ;D
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Welcome Cathy,
I've only been active on this site since last Sunday and eight weeks out from my surgery. My Tumor was to big for GK or CK so surgery was my only option; based on a three consultations. All I can say is weight your options carefully and you'll be just fine. I think all of us at one time or another thought we might be nearing our end, regardless of what course of treatment we chose. Get that thought out of your mind, the science of AN treatment is tremendous, just look at us!
All the best!
Doc
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hi everyone,
i know i have been MIA since my last post over a month ago. during that time period i was busy meeting with 4 neurosurgeons and 1 neuro-otologist. everyday i flip flopped between having surgery or radiation. after my last consulation, i knew that surgery was the best option for myself. so my retrosigmoid surgery is scheduled for Friday December 11th at 9 a.m. i am relieved to have finally made a decision regarding my care, but to be honest with you i am still scared. i know keeping a positive attitude and having trust in my surgical team is key. so my AN journey continues...
cathy
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Hi, Cathy! Congrats on making your treatment decision. Yes, it is such a huge relief to make the decision, but scary at the same time...seems your normal ;) Be sure to put your date on the calendar so we can cheer you on when the time comes. In the meantime. breathe deep and let us know if you have any questions. Where will you be having your surgery?
Best to you,
Cindy
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hi cindy,
thanks for your words of encouragement! i will be having my surgery at USC University Hospital with Dr. Giannotta. after all of my consultations, i felt most comfortable with him. he was HEIs neurosurgeon early on during his career (in the 80's). i entered my surgery date into the calendar. i will stay positive and continue to have faith that everything will be fine.
cathy
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Hi, Cathy ~
Congratulations on reaching your decision - and attaining a surgery date with Doctor Giannotta. I see you're already on the AN Treatment Calendar so I'll just wish you a fabulous outcome and assure you that the thoughts and prayers of many (me included) will be with you between now and the Big Day (December 11th) when we'll be sending copious amounts of good vibes your way as you enter the OR . :)
Jim
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Cathy .....
So glad you have a date for your surgery. Now you can plan and prepare and then hopefully relax as you reach the date. We are all pulling for you.
Thoughts and prayers.
Clarice
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Hi Cathy,
Glad to hear you have finally got your date, take a rest a get ready for the next part of the AN journey.
All the best
Don
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Hey Cathy! Congrats on making your decision... noting 12/11 and sending those wellness wishes your way! :)
Hang in there until then....... and know we're cheering you on.
Phyl
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Hi Cathy amid welcome,
Learning that you have an AN is shocking and I am always amazed that doctors deliver this information over the phone. My own doc had me come in, and broke the news more gently. It sounds like you are thinking this through pretty rationally and taking all the right steps that will lead you to your decision regarding treatment. I know your friends and family have good intentions but it is up to you to get as much information as you need to make an informed decision on the right treatment for you. Please feel free to ask any questions or just come here to vent when you need to. We are here to support you and help in any way we can. Please keep us posted.
Wendy
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Congrats on the date! Wow, there are going to be a lot of us doing Dec surgeries here! Myself, Tamster, You, Sobes...and a few others. What a way to ring in the holidays, eh? Seriously though, good luck and keep us posted on how you are doing there!
Jay
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hi all,
i just wanted to thank you for your well wishes and positive thoughts. only 3 weeks away until the big day. i've been keeping myself busy by working and surrounding myself with loved ones. but i would be lying if i told you i wasn't anxious and scared. as each day passes my anxiety level increases and that's when i have to take deep breathes and tell myself everything will be ok.
also, i wanted to take this opportunity to wish everyone well who will be having surgery in the next few weeks. we will all be spending the holidays recovering. i guess that's not too bad, we get to be pamepred by our friends and family during that time. :)
have a happy thanksgiving!
p.s. any advice on what to bring to the hospital?
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Hi, Cathy...sounds like you're doing the right thing by keeping busy prior to your surgery...know it helped me.
There are several threads around about what to bring to the hospital, someone will probably come along with one of them for you. But, I think the common theme in all of them is, don't take too much. The hospital provides all you need. By the time you're feeling well enough to put your pretty pajamas on, you'll be checking out! One thing everyone does agree on, though, is lip balm! It's a must. That's really the only thing personal that I brought with me...no, I take that back! Donnalynn highly recommended a soft cuddly blanket, so I did buy a wonderful baby blanket and held on to that until I checked out :D
Happy Thanksgiving to you, too!
Cindy
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Hi Cathy .....
p.s. any advice on what to bring to the hospital?
Bring a spouse, family member, or good friend. :-* Seriously, you do need to have an advocate, especially at first when you might not be feeling tiptop. As Cindy said, lip balm is a must (my husband had to run out and buy some!) ..... also, a picture of your closest loved ones who cannot be there is comforting, as well ..... skip the fancy PJs, but a robe and slippers would be good ..... if you wear contacts, bring a pair of glasses that are your current prescription (someone just posted recently that if you are going to get a new pair anyway, get the kind with flexible bows to spread over a bandage).
What not to bring: books/newspapers to read (your vision will most likely be disrupted for a few days)
Thoughts and prayers.
Clarice
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Cathy, welcome to the forum :) Making the decision on treatment was the hardest part for me but I knew it was right when I made it.
I took all sorts of things to the hospital but what I really used was chapstick, altoids to try to cover the bad taste in my mouth, a picture of my family, and my laptop. I was typing and updating my friends and family as soon as they'd let me have it. Everything else I brought stayed in my bag until I got home. Oh, I did listen to music on my phone, helped to divert the discomfort at night.
Best wishes to you with your surgery and recovery and we'll be here all along the way.
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Cindy, Clarice, Donnalyn, and Anissa,
Thank you for your continued support, prayers, and postive thoughts. Also, thank you for your advice on what and not what to bring to the hospital. So sounds like the must things to bring are lip balm, comfy slip on slippers, robe, a soft comforting blanket, and music (music does tend to soothe me). as for bringing a loved one along for support or as an advocate, i think i have that covered so much so that i don't think the waiting room can accomodate all of them...just kidding, but i have few people wanting to be there as i go into the operating room and as i come out. my mom, dad, older brother, boyfriend, and 3 of my best friends will be waking up at the crack of dawn with me the morning of December 11th. I am blessed to have a great support system (which includes all of you too :)
Take care,
Cathy
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Hi Cathy,
Just now reading this thread. A very belated Welcome ;)
Your surgery will be here before you know it, just stay focused and busy.
How bout some holiday shopping/wrapping to add stress, I mean stay focused!
Also try to walk, exercise more, if you exercise. It's important to be in good physical shape. That will help greatly with your recovery.
It'll be OK. You go to sleep, you wake up. Your loved ones have the hard part of waiting.....
Hang tough,
Maureen
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Hey, I'll be think powerful thoughts on the morning of December 11th that everything goes well for you from me to you from one Newbie to another. This all happens so fast doesn't it? It wonderful having your family with you...your favorite music is definitely calming and makes a difference. Take deep breaths as you go in and think positive thoughts!!!
Mei Mei Surgery Date Jan. 12...