Author Topic: Post-op  (Read 4686 times)

eshutterbug47

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Post-op
« on: September 22, 2009, 07:47:04 am »
Hi,
My 25-year-old son is 5-weeks postop for removal of a 5 cm acoustic neuroma.  I was just wondering if the symptoms that he is having is normal?  He is very tired all the time.  His legs are weak and he is shaky.  He does have the facial nerve paralysis but we were expecting that.  We were not expecting his legs to be so weak nor were we expecting the shakiness.  He is also very depressed which does not help the situation. I have talked to a few people on Facebook and they suggested I try the forum.  Any input will greatly be appreciated.  My name is Liz.

moe

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Re: Post-op
« Reply #1 on: September 22, 2009, 08:32:19 am »
Hi Liz,
Yes you've come to the right place and I'm sure you'll get lots of responses today!
Woah, a 5cm  AN is huge. There are a couple of other "youngsters" with large tumors that we can direct you to if they don't "chime" in. Mothers too.
Very tired all the time is definitely normal. The weakness and shakiness may be due to "overdoing it" without realizing it.
Everyone's post op symptoms vary so much.
 It can take quite a while to feel "normal" or the "new normal".
I remember having "wobbly, jello legs" on and off for the first year, especially when I over did it.
I'm sure others will chime in.
You will find tremendous support and empathy here. And it is an emotional toll for you too so hang in there and get your rest.
Depression post op is almost a given it seems  especially with his tumor.
Lots of safe antidepressants out there to get him over the hump, and his surgeon should not have a problem prescribing something.

My prayers go out to you and your family.
Maureen
p.s. WELCOME :)
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

epc1970

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Re: Post-op
« Reply #2 on: September 22, 2009, 09:03:20 am »
Hi Liz
Your son seems to be right where I was at about 5 weeks post op. I was shocked at how weak and tired I was after surgery! I was very active right up until surgery and then I felt like I was 90 (I was 37 at the time)! I just did my best to take walks, eat well and get lots of rest and after a while the shakiness and fatigue improved. I made myself do all this because I wanted to get better.  I went thru a peroid of feeling really down. My family was very worried. I have read that this is a common reaction to brain surgery and that doctors believe that it may be a natural part of the healing process. Regardless, I did take antidepressants for a couple of months to get me thru the hardest part but I have not taken them for almost a year. I also went to a therapist a couple of times to start to work thru what was going on with me emotionally. I would suggest that you keep an eye on your son and if his spirits do not improve have him see a Dr or therapist-brain surgery is a BIG deal and it is only normal that this would have an emotional impact. I hope he starts to feel better Liz-you sound like a good mom to be so concerned about her son! Take Care.
Erin.

reg

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Re: Post-op
« Reply #3 on: September 22, 2009, 11:57:42 am »
in regards to the size of the thing i can sympothize with you and your son i had a 4.5 cm an and iam 2.9 years post-op i had many complications following and still do what i can say is it gets better with time the wobbley or jelly legs are common because a tumor of that size presses on the brainstem  and is around if not on the cerebullum which is responsible for coordination for one and many other things i found that balance exercises while they be tiring and boring do work with persistance you guys are in my thoughts and prayers oh and ive been on antipressants (kelffor because it seems to have less side effects for me also it works on nerve pain)  reg
4.5 cm retro surgical removal dec 06

reg

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Re: Post-op
« Reply #4 on: September 22, 2009, 02:01:28 pm »
the med was called effecor instead of kefflor sorry for the misinformation (too many meds ;)) reg
4.5 cm retro surgical removal dec 06

Jim Scott

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Re: Post-op
« Reply #5 on: September 22, 2009, 03:26:41 pm »
Hi, Liz ~

Welcome.  A 5 cm AN is considered quite large and post-op recovery is necessarily going to be a bit of a struggle.  Many people think that this kind of surgery is akin to having a gallbladder removed.  You go in for the surgery, it happens while you're under the anesthesia then you lay in a hospital bed for a few days, slowly come around and eventually, you're discharged.  Then you're home, recuperating, taking it easy and within a few weeks, you're 'good as new'.  Not so - for most AN post-op patients, anyway.  

Your son's shaky legs are probably due in part to his brain's need to re-learn how to balance and in part due to inactivity.  Being tired (fatigued, really) is very common, post-op.  The operation is long and complicated and takes a big toll on the body.  Fortunately, your son does have his youth on his side and should make a full recovery, in time.  How much time?  I have no earthly idea.  The recovery process varies wildly but 5 weeks is not that long and he should see improvement soon.  Not totally normalcy, mind you, but less fatigue as his body heals.  I would definitely consult your doctor regarding the depression.  There are many medications available that can alleviate that condition and he should pursue them, under a doctor's supervision, of course.  

I would definitely suggest that your son attempt to walk as much as possible.  Our bodies were made to move and even something as simple as walking can help wobbly legs gain more flexibility and strength.  Very short walks (to the mailbox, for instance) are a good beginning.  Rest as needed, afterward.  Slowly increase the walking as he feels able.   At 25, your son has a good chance of making a solid recovery but he will have to fight for it, as we all do.  I know you'll help him and so will the folks on this forum because we've been there and can understand his struggle.  Please feel free to ask whatever question arises.  We aren't doctors but we have a lot of experience dealing with AN issues and our members are eager to help.  I hope these posts turn out to be useful for your son's recovery.

Jim

« Last Edit: September 24, 2009, 03:03:25 pm by Jim Scott »
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.

eshutterbug47

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Re: Post-op
« Reply #6 on: September 22, 2009, 05:27:42 pm »
Thanks for everyone's responses.  Michael actually read them, which is a PLUS!  Hopefully something will click with him and he will do what needs to be done to recover.

clr

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Re: Post-op
« Reply #7 on: September 22, 2009, 05:36:54 pm »
Hello Liz,

You have certainly come to the right place!

My daughter had a 4.6 cm AN and I thought that was huge! She is 24 and her last surgery was June 22.  I do not remember her having weak legs but she did go back to work 4 weeks after her last surgery. She would come home completely exhausted,  sometimes she would even come home for her hour lunch and take a quick nap.

She was also extremely depressed. She finally went to her family doctor and she perscribed an antidepressant which has really helped her. She is doing much better as far as the depression goes.

As far as shaking goes, her hands are shaking now. She has had 3 surgeries and this is the first time she has had shaky hands.

It's been 3 months now since her last surgery and she is doing quite well. She has gone back to school part-time and she works part-time. She still has the droopy mouth and her eye really bothers her, but this will soon pass also.

Good luck to your son! All you can do is take it day by day.

Cindy
I do not have an AN, my 23 yo daughter does. Her username here is Bets.
4.6cm x 3.6cm x 4.4cm  UPMC Retrosigmoid 12/29/2009, 01/19/2009, 06/22/2009 
CK Oct 2009, Dr. Hirsch
SSD before & after surgery
After 3 surgeries, some facial paralysis, but will come back

cecile k

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Re: Post-op
« Reply #8 on: September 22, 2009, 05:51:15 pm »
Hi Liz:

Fatigue is totally normal - wow 5 cm tumor is large and it will take time for your son to recover. At five weeks postop I was still recovering at my parent's place and was very weak and shaky as well. I basically had to relearn to walk again - balance was totally a goner after surgery. So, hang in there....it WILL get better and tell your son that behind the clouds the son IS shining. I'm now nearly 8 years post op and am still seeing improvement in certain aspects of my  recovery.  Hugs to you - I was ever so thankful to my parents during my recovery time....they were absolute gems. Tell your son to give YOU a hug at least once a day :-)

Cecile

leapyrtwins

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Re: Post-op
« Reply #9 on: September 22, 2009, 09:10:46 pm »
Hi, Liz - and Michael - glad you found us.  Some of my bestest friends talk about AN's on Facebook, but I'm not a member, so I talk about them here  ;D

As others have said 5 cm is a big AN and 5 weeks post op is still very early in the recovery phase - even for someone as young as Michael.  Things should and will get better over time.  Patience is key - although I know from personal experience that it's often hard to find.  Depression is common, and it if doesn't pass in a reasonable period of time, please make sure Michael gets help.  Some folks are hesitant to tell their doctor that they are depressed, but it happens to the best of us, so don't ignore it.

We are here to help in any way we can, so please don't hesitate to ask questions, share your experience, or just vent.

Best,

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

stoneaxe

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Re: Post-op
« Reply #10 on: September 24, 2009, 07:16:54 am »
Liz...sorry to hear about your son. As difficult as it is for him i'm sure you are hurting too. I've always felt I could make my way through anything happening to me but if it was my girls I don't know what I would do.

Mike...it does get better...5 weeks is a short time in your recovery. Don't let how you feel now get you down. As you feel better the best advice I can give you is to work harder than you ever thought possible at getting life back to normal. I struggled for a long time until I learned that challenging yourself was the key to recovery.
http://anausa.org/forum/index.php?topic=8379.0
Not sure where you are located but if you are anywhere near Boston but if you would ever like to try this let me know.

Depression is definitely normal. This can be a positive life experience though. You'll find that as things get back closer to normal that you appreciate what you have much more. I'm actually happy in a way that I've gone through this....some of what has happened to me has added to my life immensly. I had never surfed before having an AN and now its a big part of my life and my best friend...one of the greatest people I've ever met, I met because of it.

You have the benefit of finding this forum early and lots of knowledgable folks to ask for advice. Take advantage of it. get well...you have a long and fruitful life ahead of you.

regards,
Bob
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Nani

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Re: Post-op
« Reply #11 on: September 27, 2009, 08:24:27 pm »
Hey.  I sent you a PM.  I am actually almost 7 months post-op.  I can't count ::).  Anyway, there is hope.  I promise. 
- AN surgery 3-17-09. 3.8 x 5.1cm tumor.  1 month in the hospital and a couple in ST, OT and PT.

*People are always going to be behind you telling you you can't.  The important thing is to turn around and say 'watch me'.