Author Topic: New to website and 7 weeks post  (Read 4737 times)

den9385

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New to website and 7 weeks post
« on: August 10, 2009, 06:40:17 pm »
I was hoping to get some positive feed back from some of you. I had surgery at Johns Hopkins and as the same as most of you had tough time getting back. A little back ground of myself. I am very active so I tried so hard to get things going early but realized fatigue was a big factor. I am a personal trainer who owns my own business and works very long hours. I am back to work and running and also mountain biking :) My question for you wonderful people is should I cut my hours back and not jump back into it to quickly? I am very motivated and sometimes don't realize that I pushed to far until its to late. I feel good for the first day back but am I going to feel it later?  I also would like to know average time it took most people to bounce back to what they felt was normal. I also have complete hearing lose in left ear and with three kids its hard not hearing them. I am also scared, because they said there is still some small fragments still on the 7th nerve. I am hoping that it does not grow because one surgery was hard enough.
Sorry for rambling just have so many things to ask not enough space.
Thank You

Joe B

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Re: New to website and 7 weeks post
« Reply #1 on: August 10, 2009, 07:04:06 pm »
Den

 Welcome to the site. What type of surgery did you have?
  
   I think the fact that you were and are still active will help a lot in the recovery process. I also was very active before my surgery as well as owning my own business and working a lot of long hours.  I am about 2 weeks ahead of you (surgery 6/04/09) on the recovery process and have also been running, kayaking, and biking. I am feeling great 9 weeks after surgery with very few issues (slight eye issue and I also lost hearing in my left ear). My balance is very manageable and I am back to doing almost everything I could do before the surgery. I try to make it a point not to overdo anything and rest when I need it. Your body will let you know when you need to rest(if not that day, then you may feel it the next day).  As you may have already read on this site, everyone progresses/ returns to 'the new normal' at a different rate. It sounds like you are well on your way.

Feel free to ask all the questions you need to. The folks on this site are fantastic and willing to answer all questions asked.


Joe B.
« Last Edit: August 10, 2009, 07:06:16 pm by Joe B »
2.9 cm AN left side
MRI 5/13/09
Translab 6/04/09 Tampa General Hospital
SSD

CHD63

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Re: New to website and 7 weeks post
« Reply #2 on: August 10, 2009, 07:23:05 pm »
Welcome to this Forum, Den9385!

It sounds like you are doing extremely well in your recovery ..... that's wonderful!!  As Joe has said, the recovery process is a unique and very individual thing.  There are a couple of universal things that vary so greatly:  fatigue (the biggest issue), hearing, and balance.  Many, of course, have facial issues, as well.  It really is important to listen to your body and not ignore the need to rest.  It sounds like you are highly motivated to recover quickly and that is commendable.  Just be sure you do not ignore the need to take at least short rests when the fatigue hits.  Many of us have experienced bursts of energy, only to be followed by periods of "wiped out."

Best wishes for an uneventful, quick recovery ...... and no regrowth (all of our hopes)!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Kaybo

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Re: New to website and 7 weeks post
« Reply #3 on: August 10, 2009, 08:20:11 pm »
Hi Den!
WELCOME!  Sounds like you are doing great!  I agree with what has been said - do what you can but listen to your body.  I think that the more you do & more determined you are to get better, you will!  I think that if I could plan my own schedule, or clients, I would probably start out with some "built-in" breaks (maybe a little nap sized one in the afternoons?) so that if you need a little rest, you can do it.  If you need them and they aren't there, you are going to regret not being able to take one and over time I would think that could be detrimental.  Just my thoughts...

;D
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!

moe

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Re: New to website and 7 weeks post
« Reply #4 on: August 10, 2009, 10:52:21 pm »
Den,
Doing all that at 7 weeks? WOW! Be sure to listen to your body, and with straining, I don't know what the rule is, but I'd take it easy on the heavy weights unless it was OK'd by the dr.
The fatigue is so  normal. Should get better with time.  But since you are in such great shape I see that you have bounced back wonderfully.
Factor in "breaks" as part of your daily routine. Whether it is lying down, "napping", listening to CD's, whatever.
I just think that is important in the healing process for months....
I heard one week of recovery for every one hour of brain surgery. Anyone else hear that?
My brain surgery was 11 hours long....

How long was yours?
Maureen
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

CHD63

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Re: New to website and 7 weeks post
« Reply #5 on: August 11, 2009, 08:14:10 am »
I heard one week of recovery for every one hour of brain surgery. Anyone else hear that?
My brain surgery was 11 hours long....

I had not heard this but it stands to reason that it could be a gauge since shorter time in the brain is better.  Interesting thought.  My surgery was around 5 hours and other than fatigue and ongoing balance issues, I was very stable after five weeks post-op.  Although I have continued to see improvement, even now at 18 months out.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Jim Scott

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Re: New to website and 7 weeks post
« Reply #6 on: August 11, 2009, 08:58:13 am »
den9385 ~

All the useful responses have already been offered so I'll just welcome you to the forum and congratulate you for doing so well, so quickly.  :)

Please gather your thoughts and feel free to post a question whenever it's convenient for you.  We're not doctors and don't have the answer to every question but our collective experience as AN patients - in varying stages of recovery - can be very helpful on a practical level.  Consider us as a resource and please visit the forum(s) again, soon.  :)

Jim
« Last Edit: August 17, 2009, 03:12:29 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.

Darin

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Re: New to website and 7 weeks post
« Reply #7 on: August 16, 2009, 05:42:58 pm »
Hey den9385, those digits don't mean anything to me, but those are my initials! Anyways...Yeah, I would say you're doing great. I had surgery 7/1, and am up to walking 2 miles, but can't quite run yet. I ran in a 1/2 marathon a month before surgery, so it is killing me just walking. I go to physical therapy twice a week, and her opinion was that I can do anything that I feel up to. Just listen to your body. It knows things  ;)
3cm AN on right side
Surgery July 1st, 2009
C'mon facial nerve, you can do it!

Keri

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Re: New to website and 7 weeks post
« Reply #8 on: August 17, 2009, 08:02:49 am »
Hi Den,
Welcome. I agree with Darin and everyone else, for that matter. If you're tired, fatigued, don't push it. I'm glad you've been able to get back to your pre-op activities. Many here have experienced that if you're active before, it really helps post op. Some (like Stoneaxe) wasn't that active before his AN experience, but now does miles of stand up paddle boarding and it really helped with his balance issues.
I too had my surgery in the Baltimore area (University of MD). Are you local? My surgery was in late January; I've run a couple of slow half marathons since. Now I'm training for a marathon in Baltimore - figured I'd go back to the city of my surgery.
I too have three kids and the hearing loss sometimes is really difficult to deal with (I had translab, SSD). When it's quiet I feel like I hear almost normally sometimes. But when there's background noise, forget it. I can't understand much of anything.  I may go the BAHA route after the marathon.

Take care - let us know how things are going.
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

Syl

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Re: New to website and 7 weeks post
« Reply #9 on: August 17, 2009, 01:37:00 pm »
Den:

Getting back to work was a good thing for me. It helped put some normality/normalcy back into my life. I went back part-time the first week to see how much my body and brain could handle. I was exhausted at the end of the day for months. It wasn't until about 10 months post-op that I got to an acceptable new normal. My head finally began to clear up and I had energy. I didn't feel so wonky-headed all the time. Then I took a vacation and went to Puerto Rico. I was fine there, but the jet lag upon my return home hit me so hard that I haven't recoverd quite yet. I still feel tired and wonky-headed a month after returning home. I have faith that my head will clear up again.
You have to listen to your body. Sometimes it may feel tired for weeks after trying a new activity. As your physical condition improves, you should be able to handle it better. But you need to be patient and give your body and head time to heal.

Syl

1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

alicia

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Re: New to website and 7 weeks post
« Reply #10 on: August 24, 2009, 08:49:16 pm »
I am 3 months post op.  I always said I felt good post op - and meant it, but at about 2 1/2 months I really started to feel like myself again.  I feel as though the fog has been lifted!  I took it very slow the first 8 weeks...only walking.  I am antsy to start back to lifting weights and running.  I have only ran a block or so at a time at this point, but lately it feels good, so I am ready to push harder. 

Just give yourself a few more weeks and I bet you will be amazed!
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

leapyrtwins

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Re: New to website and 7 weeks post
« Reply #11 on: August 25, 2009, 06:24:51 am »
I also have complete hearing lose in left ear and with three kids its hard not hearing them.

Hi Den.

Sounds like your recovery is going very well.  The biggest thing I want to stress is listen to your body.  Fatigue after AN surgery lasts a long time and sometimes it hits you when you least expect it. 

As for the hearing, look into the BAHA.  I got one 9 months post op and it was the best thing I ever did.  I hated being SSD - it had a big impact on my work and on my interacting with my kids.  Ask your doc if you can try the demo - most find it amazing - and go from there.

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