Author Topic: Any "can't believe it well that well" stories?  (Read 3642 times)

bleavitt

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Any "can't believe it well that well" stories?
« on: October 27, 2008, 11:54:09 am »
I'm 39 male with a small to medium AN.  I cancelled middle fosa surgery next week with the University of Michigan, to see Dr. Kartush with the Michigan Ear Institute in two weeks.

I'm VERY active, biking, downhill skiing, outdoors anything person who can't sit around. I manage over fifty employees, and the thought of not being able to enjoy the the things I love to do, and missing work for weeks, or longer, doesn't register wih me.

Has anyone who has had middle fosa been on their feet in a couple of weeks, back to work, and been physically active within a few weeks?

Cheryl R

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Re: Any "can't believe it well that well" stories?
« Reply #1 on: October 27, 2008, 12:46:42 pm »
Everyone each has their own experience with this and hard to judge.   Part depends on tumor size and part on tumor location.          Your body may have compensated some already but you won't know till past surgery.     Being already a very active person should help you adjust back to the active things you want.           I never noticed alot of problem after my first mid fossa inside but was bothered outside and felt the wonky head weird feeling.   It improved in time and making one go outside and walk.             I have never been dizzy at all with any of my AN surgeries.  I have had more than one due to being NF2.                  Tiredness for some time can be a problem and it varies with everyone also.                             I was back to work in 2 months as a nurse but might have been able a little earlier with the first mid fossa.
Some of the after effects really just need the time for the body to compensate for it and you can be worse off for being too active.    It is frustrating when one doesn't know the answers when you would like to know.
Good luck with your decision of treatment.                Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

bleavitt

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Re: Any "can't believe it well that well" stories?
« Reply #2 on: October 27, 2008, 12:49:04 pm »
Thank you for your input, i appreciate it!

jgr01

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Re: Any "can't believe it well that well" stories?
« Reply #3 on: October 27, 2008, 03:29:31 pm »
I agree, everyone has a different experience, reading on this site is proof of that.  I think you are doing the right thing by going for second opinion. I had a 1cm AN removed a year ago, Middle Fossa. I did not have the balance issues that are common after surgery, I did have vertigo month prior to diagnosis. I was back to the gym before I was able to go make to work, modified work outs of course. This is major surgery after all.
1CM middle focca 9/27/08  Dr. Wiet- Ear Institute of Chicago

Dog Lover

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Re: Any "can't believe it well that well" stories?
« Reply #4 on: October 27, 2008, 07:01:43 pm »
I guess it depends on what your definition of "a few weeks" is. Getting up and around at home is much different that up and around and working full time.

I started back to work 1/2 time (at home) at 6 weeks and full time in the office at 8 weeks. Fatigue is my biggest issue. I'm wiped out by the end of the day and especially by the end of the week. (I'm going on 10 weeks post op). And, like I think Cheryl said - when I overdo it, I pay for it (I have a hard time just resting..drives me nuts).

I think compared to some of the folks here, 8 weeks and back to pretty much normal activities is pretty good.

Good luck with your decision and your outcome.

Cathy
Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

leapyrtwins

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Re: Any "can't believe it well that well" stories?
« Reply #5 on: October 27, 2008, 07:02:33 pm »
bleavitt -

I'm with Cheryl.  Everyone recovers differently and at their own pace.   Being only 39 with a small/medium AN plus the fact that you are very physically active should all be positive points in your favor.  However, it's hard to know what side-effects you will encounter and no doctor can guarantee you anything 100%.  You pretty much have to take things as they come. 

I had retrosigmoid in May 2007 and was back to work part-time in 2 weeks and full-time in 4.  There are similar stories on the forum.

From what I know of Michigan Ear, it's a great place; very good reputation.  One of the doctors (Dr. Richard Wiet) at the practice where I had my AN removed (Ear Institute of Chicago) has a son currently doing an internship @ Michigan Ear. 

Good luck with your appointment; keep us posted.

Jan   
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MAlegant

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Re: Any "can't believe it well that well" stories?
« Reply #6 on: October 27, 2008, 08:09:54 pm »
Hi there,
I had retrosigmoid (not so different I think) and started running again at 3 weeks (slowly), and just in the past two weeks am back to running my normal distance, normal speed.  I went back to work part time at 6 weeks and full time at 8 weeks. My doctor did tell me that some male patients he's had have been playing golf within two weeks.   I probably could have gone back sooner if I'd had to but luckily I had the luxury of time and was able to delegate my responsibilities to others.  Of course, I had no balance issues to speak of so that was a big plus for me.  I'm still not quite my old self (I like to think I'm new and improved) but I'm very close.  Hope this helps.
Best,
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kaybo

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Re: Any "can't believe it well that well" stories?
« Reply #7 on: October 27, 2008, 08:31:19 pm »
As everyone has already said - no one can predict EXACTLY what it will be like for you.  I think you will be fine and will be doing all the things you want fairly quickly after your surgery, BUT you have to be prepared for anything.  I was 25 and in excellent shape - I was a PE teacher, for goodness sakes!  To say that I was active was an understatement.  However, it took me a LOT longer to bounce back than I would have thought!  I don't want to be a downer, but I think you have to expect the best and be prepared for the worst!   ::)
Good Luck!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

sher

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Re: Any "can't believe it well that well" stories?
« Reply #8 on: October 28, 2008, 12:04:00 pm »
Have you decided against Cyberknife? (radiosurgery) ... I have been happy with the recovery so far. I am about 1 month post CK. I am older than you (52) and sometimes age plays a part in the decision. I would research CK or GK if you haven't done so. Let me know if I can help.
Sherry
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

Sue

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Re: Any "can't believe it well that well" stories?
« Reply #9 on: October 28, 2008, 12:11:41 pm »
Hi Bleavitt!  Welcome to the Forum.  

It's a known fact that Type A personalities make rotten patients!  ;) :D  Having said that, there have been several strong minded men that I can think of who pushed through their treatments with flying colors, and I think part of that was sheer will power.  So, you may be back doing the things you love sooner than you think.  Having said THAT, you could however face an uphill battle in your recovery, depending on so many things that are impossible to predict.  Since you have a smaller AN, you might look into radio-surgery as a treatment option.  It's good to look at all the possibilities open to you and to ask a lot of questions of your doctors and to get second and third opinions if you feel that you aren't happy with the doctors, their staff or facility.  When the treatment plan looks good to you and makes sense to you and feels comfortable for you, that is half the battle I think.  Don't be a stranger, let us know how it's going for you!

Best of luck to you and I hope all goes smoothly in your treatment and recovery,

Sue in Vancouver, WA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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