ANA Discussion Forum
General Category => AN Issues => Topic started by: lauralynn on March 08, 2009, 02:39:18 pm
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I was just recently diagnosed with have a 4 cm Acoustic Neuroma. I have been dealing w/ ringing in the ears and problems w/ my equilibrium for a while. I didn't think it was anything serious. Being a single mom of four I have always put myself last and took care of kids first. I had a physical for a job about a year ago and the doctor told me I failed the hearing test due to some hearing loss in my left ear. This past January I finally decided to get it checked out. My ENT did a hearing test and said I have 50% hearing loss in my left ear. Looking back on it now, after I told him my symptoms I'm sure he probably knew it was an AN. He ordered an MRI which I had done a few days later. I scheduled it before work so I wouldn't miss any time. After they finished the MRI they said I needed to wait for the doctor to call. He wanted to go over the results with me. I wasn't alarmed at this point. My doctor was in surgery so one of the MRI doctors pulled me in a room that had my MRI films up. Now I was getting scared. The doctor said they found a mass. He told me it was a benign tumor. I was shocked! Never thought they'd find anything and figured I'd just have to deal with the ringing in my ear for the rest of my life. The doctor said I couldn't go anywhere until my ENT called. I asked why couldn't I go? I needed to get to work! I was going to be late! He said they were concerned because of the news they just told me and plus the tumor is pressing on my brain and that could cause me to have a seizure. Now they had me really scared! I asked when would this have to be taken care of? He said probably in a week they'd have to do surgery. I asked how long would I be in the hospital? He said about 2 weeks. I said, "I can't be in that long!" I know this doctor just gave me some bad news, but you would have thought he just told me I had 6 months to live! After waiting 2 hours for my ENT to call, they finally let me drive home but told me not to drive unless I had to. My doctor called me shortly after I got home and said it was ok for me to drive so I went to work.
I went to see the neurotologist the following week. He again told me what I have and that it is the size of a golf ball. Radiology would not be an option due to the size. He said I'd have to have it surgically removed in the next couple of months. I then set up an appt. with the neurologist. He didn't want to see me for 3 more weeks. I didn't want to wait that long but that was the surgeon's wishes so I couldn't argue. I finally went to my appt. (Feb 26) and the neurologist said he would do the Translabyrinthine leaving a layer of the tumor to try to not damage the facial nerve. I would need to follow up with one session of Gamma Knife. I am having my surgery done at St. Joseph Hospital (Barrow Neurosurgical in Phoenix) which is ironically two minutes down the road from where I work. My surgery date is April 14. I have had surgery done before but nothing like this. I've been thrown alot of obstacles my way through my life which have made me a stronger, this is just another one. I'm so glad that I am able to contact people that have had this surgery. It's comforting knowing I can come to this forum any time and ask questions or just vent. I look forward to hearing back from you.
Thank you for listening,
Laura
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Laura,
I'm so glad you found our group. It's very scary to be diagnosed with any kind of brain tumor, but please know you're not alone. There are many others here on the board who have had surgery and I know will help you understand the procedure more than I can. (I had Gamma Knife only.)
This is a great group -- supportive, friendly, knowledgeable and understanding. It REALLY helps to 'feel the vibes" and have somewhere to come during the stressful time right after diagnosis, and I hope you take full advantage of asking questions and expressing ANY concerns you have. There are no stupid questions here.
Lots of hugs,
Dana
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Hi Laura,
Welcome. Barrow is a wonderful place (one of my surgeons trained there) and several people on this site have had their surgeries there. I'm sure they will chime in. I'm sorry you have to deal with this, And thank God they found it when they did. My tumor was 3x4 cms so I know how you feel. It's big, it's in your head and you're scared. We are all going through it at some stage so I think you've come to the right place. Try to find some peace between now and your surgery date. I actually needed to take Xanax (anti-anxiety) in the weeks before my surgery. Keep us posted.
Best,
Marci
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Laura,
Welcome to the forum. Like you, Jim had a large AN removed via surgery and follow up radiation. He recovered very well and I'm confident you will also. My blog (address below) has my story of my AN journey. You're welcome to read it. If there's anything we can do, let us know. Just know that you will be fine as this is a very treatable thing. We've all been where you are with diagnosis so we understand.
Regards,
Brian
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Hi Laura,
Welcome to the forum. "You've got an acoustic neuroma" is not what anyone expects to hear, but we have all heard it here. As you are on your way to surgery (Barrows is good, as Marci said), you should put your date on the AN Calendar - see below for the link. As a single mom of four, you may want to start lining up some help for the first few weeks of recovery. One of the things you have to do when you get one of these is learn to ask for and accept the help of others - you can't do it all yourself.
Make yourself at home! :)
Steve
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Laura,
You've found the right place. Take comfort in knowing that you have a lot of new friends here that will help you get through this. We've all been there and know exactly how you feel. Plus we have plenty of practical experience to help guide you. My prayers are with you and I feel confident enough to say that everything is going to be OK.
Wayne
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Welcome Laura! You definitely found a good place for support here. I've also been recently diagnosed with a 2.1cm AN with translab surgery scheduled for April 1st. I am also a mom to 4 children (5,5,3,1). I am also scared. Ask lots of questions, people here have been through about everything so chances are you'll get some answers. How old are your kids? Best wishes for your upcoming adventure!
Anissa
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Laura:
I'll bet you'd never heard of an acoustic neuroma before this. That happens alot around here. You've come to the right place. Hang around a bit and you'll get to know some wonderful folks. I hope we can put your mind at ease a bit.
Syl
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Had my surgery done last October and am feeling fine... I know some ladies that were in the same situtation as you are in now. They are back to work and taking care of their families. Stay strong and ask a bunch of questions. Designate someone to be your AN helper while you are in post op recovery. Before you know it you will be back on your feet and this will be a reference point in your life. Keep us informed....
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Hi and welcome Lauralynn ;D
I am a single mom of two and had surgery in May 2007. Like Steve and Marci I have heard nothing but good things about BNI; they have a great reputation.
Unless you run into major complications (not the norm) you should NOT be in the hospital for two weeks post op. Hospital time is generally 4-7 days.
As Steve mentioned you'll definitely want to set up help for the first few weeks post op. You will have limitations on lifting, bending, driving, etc., and will be very fatigued. I'm the type who generally finds it hard to ask for - and accept - help, but in this case it is a MUST.
Being scared is perfectly normal and understandable - I dare say most of us have been right there with you at some point in our AN journeys.
Don't hesitate to lean on us for support and please, feel free to ask us anything you want to know.
If you're shy, and don't want to post something on the open forum, you can always PM most of us.
Good luck,
Jan
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Hi, Laura - and welcome ~
I'm sorry you've been diagnosed with an acoustic neuroma and it seems as if the circumstances that accompanied that diagnosis were unnecessarily frightening for you because of somewhat insensitive medical personnel. However, now you know. The good news in all this is that the tumor is benign, although in a troublesome spot.
As a single, working mother you certainly know what an obstacle is - but you also admit to having grown stronger because of the ones you've had to surmount. I believe that how we respond to problems often defines our character and Laura, judging by what you've shared with us, you're going to get through this O.K. , as many others have - including me. I'm the 'Jim' Brian ('Pooter') referred to in his post. Almost 3 years past surgery and radiation treatment, I'm doing just fine with only the most minimal reminders of my own AN ordeal, which, on hindsight, wasn't really so terrible, after all. :) I survived just fine, just as you will, I'm sure.
As a new member, I'll caution you that this is a support site for AN patients and, due to the complicated nature of ANs, some patients don't always have perfect surgical outcomes. They are encouraged to post here and vent, ask questions and, most of all, accept the support given by folks who know exactly what they're dealing with. However, you shouldn't assume that every AN patient who undergoes surgery has a similar outcome. Some do great, some do O.K. with a few issues and some struggle with a host of challenges. Naturally, we hope every AN patient has a good surgical outcome and I certainly hope you'll be one of those. You're having surgery in an excellent facility and things look promising.
So, pull up a chair, slip your shoes off and try to relax. Ask anything you want and know that you're among friends. Friends who know what you're dealing with because they had to do it, too.
Thanks for visiting. I look forward to seeing your posts as the weeks unfold. :)
Jim
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Hi Laura! As many people say on this forum, "WELCOME! -- (But sorry you have to join the AN club.) "
It sounds like you are getting the care you need at a very good facility -this is great news!
There is a lot of information to absorb, so try to take a break once in awhile when you need it.
(Even though my sister was first diagnosed with an AN, so i knew what it was, it is still quite a journey to get thru all the information.)
I am in W & W (Watch and Wait) mode, so i cannot help you with the surgery questions.
But there are SO MANY WONDERFUL PEOPLE HERE who can.
I have never joined another forum, but i am so thankful to have found this FANTASTIC group of folks!
All my thoughts and prayers are with you and your family.
Keep posting and asking questions!
Sincerely,
Sue
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Laura~
Just wanted to say hello and WELCOME! As others have said "Ask any questions!" We are here to help!
K ;D
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Hi Laura,
I just wanted to welcome you to our forum. I can well imagine how shocked and frightened you were when you were diagnosed. As you can already see, this is a great place to come for comfort, support, advice and just to vent. We are here to help however we can.
Best wishes,
Wendy
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Hi Lauralynn,
My thoughts are with you. I was recently diagnosed as well. I will be seeing the surgeon tomorrow. Hang in there. I was wondering if anyone can give me some advise on how they managed day to day while waiting for treatment? I seem to be experiencing a lot of anxiety and panic to the point that I have not gone to work in over a week. Any thoughts will help.
Thanks.
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[HIJACK ALERT]
Vivian,
Some members have stayed busy, others have dived into research, while others still have been put on anti-anxiety medication until they're surgery. If this has been a problem for you that you can't seem to shake, talk to your doctor about possible options you have. Make sure that your surgeon knows anything that you may be on (medication wise) because it may affect surgery.
Regards,
Brian
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[HIJACK ALERT]
duly noted, my Pooter! ;) :-*
Hi Laura and welcome. Not much more I can add as BNI is one of the best spots to have AN treatments (surgical and radio).... I have one question..... they dr's are noting that by leaving residual that they would follow up with one-shot GK? Did they explain why 1 shot vs. fractionated (multiple doses/days)? did I read that correcly in your post or please correct me if I am wrong. I know of some that had their AN's "debulked" and follow up with FSR (Jim Scott is a terrific example)... but I, personally, have not heard of someone having GK after partial AN removal... only curious, nothing more.
Welcome to the site... the drinks are watered down but the support is overwhelming (as you can see). We're all here to help! Hang in there!
Phyl
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Laura,
It's scary to come out of the "fog", post-surgery, with loss of hearing, facial numbness, double-vision (in my case), head noise, and/or dizziness. No doubt about that. You may have any combination of these symptoms. But remember, things WILL improve over time...I promise.
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Hi Brian,
Thanks for replying. I have been taking .5 Ativan that I was suppose to take prior to the MRI and find that it kind of calms me down a little bit. My family Dr. prescribed it. But I will definitely talk to the surgeon tomorrow to see what else I can take. Do they give you something the night before the surgery to calm you down? I figure that even if the Dr. says to wait for surgery, eventually It will have to be done, so better to get it over with before it starts affecting other nerves. What do you think?
Vivian
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Vivian,
I wasn't given anything prior to surgery, nor have I heard of anyone specifically taking something the day/night before surgery. However, it was pretty fast in the morning when they get you dressed for surgery and then put an IV in you.. After that, the anesiologist gave me "something to calm me down".. Let's just say that I don't remember a thing about from after about 5 minutes from getting whatever it was and the next day when wheeled to my private room (don't remember ICU at all and was moved from ICU to my private room about 8pm the next day). Whatever it was they gave me REALLY had me looped out.
It's normal to get nervous as the day approaches and more so the night before. Force them butterflies to fly in formation tho!
Only you and your doctor can decide if now is better than waiting. It's a very personal decision. My gut tells me that if you're this anxious over the thing now, then sooner is better than later... I'm not a doctor, don't play one on TV and I don't have the expertise to judge that, however. I can only go by what you've said here. Nothing about what I've said should be construed as medical advice. :)
Regards,
Brian
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Hi Brian,
Thanks a lot for your input. This helps!
Vivian
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Vivian,
As I mentioned somewhere in this thread, I was on anti-anxiety medication until surgery. The doctor said it was ok take one the morning of my surgery, which I did. It helped enormously as I think I would have been levitating until they put me under. You might want to ask about that.
Best,
Marci
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Vivian,
first of all, with an AN your size you don't need to rush into anything. Remember that treatment can (and most certainly will) cause more problems than what you are currently having. It is obvious that you are battling with anxiety right now, so it is good to take some time to digest all this and do your research. If you can find medications that can ease this anxiety in the meantime, this would be great.
If you do feel that "you want it out right away", then make sure you find the right doctor, with a lot of experience, who you are confortable with. This is *very* important, because not all neurosurgeons are experienced with ANs. The neurosurgeon who I saw first gave me wrong information on many things (as I discovered later). Completing the consultation/referral process may take some time in Canada, but it will be time worth spending.
Let us know how your viisit with the surgeon went.
Marianna
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Hi Laura...
Sorry you got this shocking news... it really is kind of surreal. I will never forget finding out... hearing the word... tumor. I felt like i was on a TV show, or having a bad dream. The good news is, there are much worse things out there, and now you know what it is, you can get it dealt with on with your life. You sound like a strong person, and i hope you have a good support network. How old are your kids?
There are pros and cons to not having a treatment 'option'. Many who do have a choice, agonize with what is the right (and wrong!) thing to do. In a way you are lucky to escape this part.
Yes, surgery is very scary, but many here have 'been there, done that' and it will come and go and you will get past whatever comes from it. Try to get as much info as you can to be prepared for anything. Line up lots of help at home and find a surgeon you are comfortable with.
I am sorry you don't have a lot of time to get ready for the next step, but that's also less time to worry and wonder.
Keep talking and you will feel better. We are all here to help.
Best,
Trish