Author Topic: Expectations related to surgery  (Read 7743 times)

Kate B

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Expectations related to surgery
« on: May 28, 2005, 12:00:42 pm »
Hi all,

Oftentimes, the expectations we set for our surgery help us prepare for the recovery time afterword. I think the *term* brain surgery can be frightening. It doesn't have to be. Know that after any treatment you will be changed. You have just been through a diagnosis of a brain tumor and treated it.

My advice is to go into the surgery knowing that it is major surgery, that you will need to focus on your recovery, and that life will go on.  Based on data, I knew I had a high probable outcome relative to maintaining my facial nerve, and a 70% chance of hearing retention.  I was hopeful and realistic about the potential outcomes.

My advice is to set goals for recovery and make the post operative time a focus on resuming your life.  After surgery, I worked through balance issues by setting goals. They told me I had lost 37% of my balance prior to surgery, so my other side seemed to have compensated and made the balance easier to regain. My surgery was Thursday and by Sunday I made it my goal to walk around the hospital floor 3 times per hour.  My husband needed to hold on to my elbow that day, but by Monday I wanted to do it without his help. At Seton Hall, they referred to us as the couple where you couldn't tell which one had the surgery:)   

     There were a couple of times I felt off balance during recovery.  Like many on this listserv, it seemed to be at night.  Like one night I woke up in the middle of the night for a drink of water and while trying to walk around the dog,I walked into the furniture.  Or the time I just finished telling the hair stylist that I was doing great and she asked me to stand up for a moment to sweep all the clippings and I stood up and veered into the wall.  We both laughed....but truly those are the extremes and happened during the first five weeks after my surgery. 
      I NEVER had a headache with the Middle Fossa approach. My biggest side effects the first five weeks were fatigue ( I took naps daily for the first few weeks) and my right eye did not tear at first.  However, it was moist enough that I didn't need daily drops.  I went to an opthamologist in Hinsdale that works with AN's. He, too, said that my eye closed correctly and was okay.  He said sometimes the lack of tears might last for 3 month to a year to..... My tears did return right after New Years and my operation was in November.
     Keep in mind the uniqueness of the experience for each individual.  Know that your outcome and experience will be as varied as the darn tumors themselves.  But go in with an expectation that you will recover and move on.  Soon you will be on the other side of the mountain coaching others. 
     There was a movie called, Pay It Forward with Kevin Spacey and Helen Hunt.  Its theme was that the way to pay someone back for good fortune is to "pay it forward".

This is my hope for you as you begin and journey along the AN path. 

    How did others go about setting expectation levels?  How did that help you heal afterword? Please share your experiences.
Kindest Regards,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Russ

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Re: Expectations related to surgery
« Reply #1 on: May 28, 2005, 10:40:48 pm »
Hi
  If the surgery is merely intracanicular, I wish they's change the surgical name to 'intracranial' rather tham 'brain surgery'.
  I know they won't do this.
  -R

Kate B

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Re: Expectations related to surgery
« Reply #2 on: September 05, 2006, 08:04:15 pm »
Hi all,

Oftentimes, the expectations we set for our surgery help us prepare for the recovery time afterword. I think the *term* brain surgery can be frightening. It doesn't have to be. Know that after any treatment you will be changed. You have just been through a diagnosis of a brain tumor and treated it.

My advice is to go into the surgery knowing that it is major surgery, that you will need to focus on your recovery, and that life will go on.  Based on data, I knew I had a high probable outcome relative to maintaining my facial nerve, and a 70% chance of hearing retention.  I was hopeful and realistic about the potential outcomes.

My advice is to set goals for recovery and make the post operative time a focus on resuming your life.  After surgery, I worked through balance issues by setting goals. They told me I had lost 37% of my balance prior to surgery, so my other side seemed to have compensated and made the balance easier to regain. My surgery was Thursday and by Sunday I made it my goal to walk around the hospital floor 3 times per hour.  My husband needed to hold on to my elbow that day, but by Monday I wanted to do it without his help. At Seton Hall, they referred to us as the couple where you couldn't tell which one had the surgery:)   

     There were a couple of times I felt off balance during recovery.  Like many on this listserv, it seemed to be at night.  Like one night I woke up in the middle of the night for a drink of water and while trying to walk around the dog,I walked into the furniture.  Or the time I just finished telling the hair stylist that I was doing great and she asked me to stand up for a moment to sweep all the clippings and I stood up and veered into the wall.  We both laughed....but truly those are the extremes and happened during the first five weeks after my surgery. 
      I NEVER had a headache with the Middle Fossa approach. My biggest side effects the first five weeks were fatigue ( I took naps daily for the first few weeks) and my right eye did not tear at first.  However, it was moist enough that I didn't need daily drops.  I went to an opthamologist in Hinsdale that works with AN's. He, too, said that my eye closed correctly and was okay.  He said sometimes the lack of tears might last for 3 month to a year to..... My tears did return right after New Years and my operation was in November.
     Keep in mind the uniqueness of the experience for each individual.  Know that your outcome and experience will be as varied as the darn tumors themselves.  But go in with an expectation that you will recover and move on.  Soon you will be on the other side of the mountain coaching others. 
     There was a movie called, Pay It Forward with Kevin Spacey and Helen Hunt.  Its theme was that the way to pay someone back for good fortune is to "pay it forward".

This is my hope for you as you begin and journey along the AN path. 

    How did others go about setting expectation levels?  How did that help you heal afterword? Please share your experiences.
Kindest Regards,
Kate

Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

-rdh-

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Re: Expectations related to surgery
« Reply #3 on: September 05, 2006, 08:38:06 pm »
Thanks for posting your comments, this has given me more optamism about the results of surgery. 
-rdh-
Recent diagnosis, 3.0x2.4x2.7 cm AN, surgery slated for 06 Sept 15, Retosigmoid approach
-rdh-

Joef

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Re: Expectations related to surgery
« Reply #4 on: September 06, 2006, 03:43:30 am »

when talking to my coworkers I call it "ear surgery" when talking to HR its back to "Brain surgery"  ;)
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

Obita

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Re: Expectations related to surgery
« Reply #5 on: September 06, 2006, 04:53:14 am »
a good thread to be brought up to the front!!  thank you Kate and good luck rdh.  Kathy
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Kathleen_Mc

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Re: Expectations related to surgery
« Reply #6 on: September 06, 2006, 07:18:50 am »
Brain surgery it is....a flower by any other name! (or something like that).
I do refer to this as a "ear" problem and "ear" surgeries around my children and my sister (who can't handle that I've had brain surgery twice and lives with her head in the sand) but it is considered brain surgery and certainly the approach used in my first surgery involved the brain (moving it out of the way etc. during the surgery and the tumor was displacing my postieror lobe).
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Jim Scott

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Re: Expectations related to surgery
« Reply #7 on: November 11, 2006, 03:18:11 pm »
Kate:

I agree completely with your astute assessment of how we need to set expectations for our treatment and recovery.

I was determined to, as I often stated: 'get my life back' following my AN (Retrosigmoid) surgery.  I was well aware that it was major surgery and that recovery might be difficult but I also had things I still wanted to do, even at age 63.  As my general health was excellent pre-surgery, I always assumed that I would recover quickly and, even as my neurosurgeon was informing me that my recuperation would take "months, not weeks" I silently decided that I would do everything in my power to make my recovery as rapid as possible.  That is exactly what happened. 

I must state upfront that I was fortunate to have a top-notch surgical team and come out of the surgery with no facial paralysis or other major problems, although my hearing on the 'AN side' was already gone - and hasn't returned.  I was sitting in a chair on the third day following my surgery and walking around - unassisted - on the fourth day.  I was discharged the next day, based on the fact that my balance was quite good, all things considered, and my 'vital signs' were remarkably stable, including a very healthy BP and pulse rate.  So far, so good.

Once home, after a week of feeling lethargic and sleeping a lot as the hospital drugs worked their way out of my system and my body started to regain strength, I was visited by a VNA PT.  I faithfully did the balance exercises she suggested.  I also, with the PT's encouragment, started walking outside as much as I could.  The PT stopped coming after only 2 visits as she decided that I was regaining my balance so rapidly that further visits were not necessary.  I never had any problems walking in the dark, at least, not in my own home.  I kept at it and four weeks after my surgery my surgeon gave me permission to drive - a milestone.

Long story short: I was pretty much back to normal within about 6-8 weeks of my surgery.  My neurosurgeon was elated.  My wife was relieved and I was pleased, too, of course.  However, I had few surgical complications, was in very good health pre-op and had a very positive attitude that determined - as much as it depended on me - I would fully and quickly recover from this medical crisis. 

I thank God, my great surgical team and my supportive wife for much of my recovery.  However, I also believe that having the mental determination to get back to normal as rapidly as my body would allow me to was a major asset in my recovery.  I recommend any future AN patient try to develop and maintain the same attitude, when feasible. 


Jim




4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

 


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