Author Topic: I keep thinking  (Read 4385 times)


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I keep thinking
« on: September 27, 2006, 01:24:46 am »
It's 2 am and I am up again.  I keep thinking about my surgery and my little girl possibly not having her mom around, my husband having to return home from the hospital alone.  I know this is not healthy but I have heard others say they knew all would be well. I want to know that. What does this mean?  I am getting a will together and trying to get other things in order all the while battling my HMO for the surgeons I want, working full time, and trying to be the best mom I can be.  Am I normal?  I don't want to sound pathetic and I don't want to be afraid to die. I just want to watch her grow up. I still have alot to do. Can anyone relate?
3.0cm AN left
sx 10/26/06

Patti UT

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Re: I keep thinking
« Reply #1 on: September 27, 2006, 04:27:10 am »
Dear Amylynn,
   PLEASE, do not for a minute think you sound pathetic or are not normal for felling the way you do. I had about 2 1/2 months from my diagnosis to my surgery doing all the same things you are doing. Got my house and will in order. Got things lined up for hel and care after surgery just in case things didn't go well. I spent my nights not sleeping and researching for any information I could find on the internet. My husband didn't want me to read the post op patients information as he thought this would scare me even more and so I got on probably this forum and others trying to collect information for a while but then stopped per his request. I did feel though that knowing the possible not so good post op problems would help me to prepare for what could happen.  I have 2 girls that were 6 & 9 at the time (I am 2 years post op end of this week) and all I could think about was them being without a mom. I remember not really being afraid to die, but afraid to leave my kid. About 3 weeks before my surgery, and after alot of sleepless nights and alot of praying, I finally came to a conclusion that I was here to do a job, raise my kids, and that my job was not finished yet. Therefore I was not going anywhere. I think once I made up my mind about that, although I was not really any less scared, I was a little more at peace with the situation. I felt confident that I would be coming home to continue doing my job as a mom.  In hindsight, I wish I had actually logged on to this forum and communicated with other post op patients as you are doing. I read the information they had posted but never communicated with them. I have only been on this frum since early August, and I have to say, these people on here are some of the best support you can find. They have been through what your going through and they are the only people who REALLY KNOW what you are feeling and how you re going to feel after surgery. Keep posting. This is a great way to gather information and gain support. My friends and family almost seemed to minimize it to try and make me feel better, but it just made me more upset. I think it was they only way THEY could handle it, especially my hubby. This is brain surgery and there is no way to minimize it. You will go from upset, to scarred, to angry, to calm and I can deal with this, to completely falling apart, back to scared to death again and angry. You will go through all these emotions full circle several times. it is totally normal, and allow yourself to feel it. So many of us on this forum have expressed how the people closest to us really don't "get it". How we put on a front that we are doing fine to help "them" deal with it. This forum is the place for you to be able to be scared, it's OK, we have all been there,ask the questions. Keep posting what you are going through, it will help.
  If your HMO approves for you to go to House, when do you think your surgery will be? Are you in Calif? Please go to my profile and email me from there if you want to talk further We can exchange phone#'s via email if you need an ear, I would be happy to talk with you if you want.  It is an unfortunate thing you' re having to go through. You need all the support you can get. Please go to your doctor and ask for something to help you sleep. It's very difficult to sleep during all this and you really need your sleep now.
  I'm glad you posted. Take Care
Thinking of you and sending  positive energy your way and will remember you in my prayers. You have to post and let us know when your surgery will be. You will have an huge cheerleading team here to help get you through the surgery.

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Lisa Peele

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Re: I keep thinking
« Reply #2 on: September 27, 2006, 05:26:53 am »

There are 2 threads in General Discussion that might be helpful to read:  "Surgery Scheduled...Suddenly Very Anxious" and "Fighting off the Fear".

I think everyone here can relate to the fear of dying from the AN or from treatment.  At least we all consider our own mortality when we learn that we've got a brain tumor.  It's just plain scary!

It looks like you are going to HEC with Friedman and Hitselberger...and I can't tell you how much this should ease your mind.   Amylynn, these are two of the most experienced and amazing surgeons that perform AN surgery.  Dr. Friedman is an MD and a PhD.  He was featured on a Discovery Channel documentary on Acoustic Neuromas.  Hitselberger has done literally thousands of removals.  You are in the best hands...and once you meet them in person, I know you will feel more safe.

There's lots of encouraging information in my previous posts.  If you're interested in reading some positive posts, view my profile and scroll down to read some of what I've written since my own surgery over two years ago.

We're all thinking about you and sending good vibes your way!

Lisa P.

Lisa Peele, 38
Dublin, OH
4.3 cm X 3.3 cm (right)
House Ear Clinic (Friedman and Hitselberger)
June 14, 2004


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Re: I keep thinking
« Reply #3 on: September 27, 2006, 06:54:03 am »

I agree with Lisa .. I'm also a House Veteran .. you are in good hands!!!  ;D ;D

Lisa, they there on Discovery channel !! .. Jeez, I'd Love to see that .. I have to keep an eye out for it .. I actually had my TiVo looking out for "Neuroma", and recently took it off .. I better put it back now!
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital


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Re: I keep thinking
« Reply #4 on: September 27, 2006, 07:09:07 am »
I had only 3 weeks from diagnosis to surgery and they were the worst 3 weeks of my life. All the fear and anxiety of surgery and the unknown was horrible. I do know what you are feeling and I believe that it is normal. My drs did offer me an anti-anxiety medicine so if these feelings are too overwhelming you may want to talk to your doc. Stay strong, we're all here for you.
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006


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Re: I keep thinking
« Reply #5 on: September 27, 2006, 07:13:52 am »
Hey Amy, You do not sound rediculous. I think you are smart thinking about getting your life inorder before your surgery. Always being perpared is a good thing. I know you will be in good hands. but being perpared is not a bad thing. we know what you are going through because we've been there. We are always here for you.

I know before my surgery i did the same thing and i am a single mom. so i made arrangements for whom would my daughter and gave her copies of my life ins. policies. I planned my funneral even. I made sure my life was inorder before i walked into that hospital. My final plan was i had my boyfriend take me to the hospital so i would see him before i died. I just wanted him to be the last person i see and my daughter.

But look here i am and i made it even though we though i wouldn't. I am almost 3 years out and almost done with nursing school. Yeh ;D


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Re: I keep thinking
« Reply #6 on: September 27, 2006, 07:53:40 am »
Amylynn you are perfectly normal. I have not had surgery (I’m on a watch and wait) but all the same thoughts ran though my mind when I heard the news back in August this year. I have a little girl that is turning 1 year in October and all I could think of was who would take care of her and my husband if I weren’t here. That was more than I can handle and I lost sleep as well. From all the threads I’ve read on House, I think you are in very capable hands and have nothing to worry about. I’m not sure how you feel about religion but remember that God is always there and he listens to all your fears. Turn everything over to him and there will be no more worries – you will have peaceful sleep again. Good luck with your surgery and please let us know upon your return… because you will be back with us!

Sweet dreams!
Diagnosed August 17, 2006
AN on right side 1cm x 7mm x 7mm
30% hearing loss with no other symptoms
Watching and Waiting
It's mind over "matter"... even if the "matter" is in my mind


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Re: I keep thinking
« Reply #7 on: September 27, 2006, 09:37:52 am »
First of all, I think all of us have freaked out.  This surgery is A Big Deal.  It's very normal to be scared, anxious, and worried.  And, personally, I think having young children adds a whole 'nother dimension to dealing with the diagnosis (my sons were 3 years and 4 months when I was diagnosed).  You're right - your job with your children isn't done yet.  My kids were all I could think about when I was sitting outside the OR being stuck like a pincushion for all the IVs!

For me, what helped put my mind at ease was knowing that I'd done all my research and knew, in my heart, that I was making the best choices about treatment that I could.  But I also, like you, made sure all my "affairs" were in order.  This is a scary surgery, especially looking at it from a pre-op perspective.  You're in great hands, though, and have made the best choices you can for yourself to get yourself to the best possible outcome.  As others have said, allow yourself to feel everything and deal with it, and come here to express it if you don't have that support IRL.  We've all been there and completely understand.

diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)