Author Topic: Athletics and Post AN Life  (Read 37756 times)

stoneaxe

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Re: Athletics and Post AN Life
« Reply #30 on: April 20, 2009, 01:07:27 am »
Hi Steve,

Late reply to your post. Hope it helps. Given your attitude I don't think you'll have any problems getting back to an active life. My AN has actually made me more active. I'm in better shape physically than I have been in at least 20 years because of a need to push myself for vestibular therapy so that a more normal life could be possible. One of the reasons I really like Standup is that I can push hard without the same concerns for injury that I would have on dry land. Falling in the water doesn't hurt. While I haven't gotten back downhill skiing yet I feel like I could, no more moguls though. I've been on my bike but was cautious and felt like it could go wrong quick. You're mileage will vary of course.
http://anausa.org/forum/index.php?topic=8379.0

And from the sound of your love for fishing (something I share) here's something else you'll appreciate to do on a standup board. "Walking the dog" http://www.youtube.com/watch?v=B9j7Oatucw8

P.S. I'll be very interested to hear how things work out for you. I'm scheduled to meet with Dr McKenna on May 6th to discuss options. Unfortunately my tumor is growing again so i'm kind of back to square one with this whole thing.
« Last Edit: April 20, 2009, 01:31:27 am by stoneaxe »
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

NancyMc

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Re: Athletics and Post AN Life
« Reply #31 on: April 20, 2009, 04:12:35 am »
Oh, man, stoneaxe, that video is awesome for those of us with vestibular therapy exercise needs.  My eyes are crossed watching it!
Back to Boston now for stitch removal.  Yippee!
Great meeting you and the boss,
Nancy
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Lilan

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Re: Athletics and Post AN Life
« Reply #32 on: April 20, 2009, 06:59:29 am »
This story about a race includes an AN patient post-treatment:

http://www.idahostatesman.com/sports/story/740000.html

Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

Seal

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Re: Athletics and Post AN Life
« Reply #33 on: April 22, 2009, 04:13:39 am »
Well, it is more than one week after the surgery, and the improvements are obvious.     I have maybe 90% of the facial numbness gone now, and I can tell that the balance is different and actually improving already.     So we begin the slow climb back towards the new normal.       It should be an interesting summer!
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

Seal

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Re: Athletics and Post AN Life
« Reply #34 on: May 03, 2009, 02:12:54 pm »
I thought I would bump this up again.   Tomorrow will be three weeks from the Grand Event.   Generally, I am feeling pretty good, and the progress seems to be at a normal pace or slightly ahead.    I am lucky so far with minimal headaches, and the facial numbness has receded.     The real issue is the balance which continues to improve.     In fact, I feel good enough today to actually start thinking about the bike.    The first step will be to start spinning again in the cellar on the windtrainer.     However, I still have enough fatigue that a daily nap seems to still be needed.    Today, I slept a solid 1.5 hours after lunch.  Nap is good.    So I might try a good easy spin on the stationary set up this week and see what that does to me.    If I can handle it, I will continue.   If not, I'll back off and try it in smaller chunks of time.   I really did underestimate the fatigue factor though!!   


Steve
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

leapyrtwins

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Re: Athletics and Post AN Life
« Reply #35 on: May 03, 2009, 02:23:50 pm »
Steve -

you aren't the only one who underestimated the fatigue factor.  I was definitely guilty of that  :P

I think your plan to start with the windtrainer and then move to the stationary bike before switching to your regular bike is a good one.  I don't have a windtrainer, but I used my stationary bike regularly before I moved to the "real" thing.

The biggest issue I had with my regular bike was balance - especially when turning corners.  Any sudden moves of the head aren't good either - takes a big toll on your eyes and creates dizziness.  The first time I got on my bike, I promptly rode into some bushes  ::)  Then I gave up - which was my biggest mistake.

It took me an entire year to get back on my bike - I just wasn't brave enough - but when I did, I found with time that my balance and vision issues improved rapidly. 

So my best advice is take things slow, but be persistent.  You'll be back to riding again before you know it.

Good luck,

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

texsooner

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Re: Athletics and Post AN Life
« Reply #36 on: May 03, 2009, 05:56:59 pm »
Steve, I agree with Jan...I think that's a good strategy to start on the trainer. If I had one, that's what I would have done. I'm an avid biker and it really worried me that I might not have good enough balance to do it again. I too was a bit wobbly for 2 to 3 weeks. I got my confidence up by walking for long stretches, then started running some and then finally got the courage to get on my road bike at about 3 weeks post op. I took it in small chunks just a few miles at a time and also made sure and stayed away from heavy traffic roads. Once you do venture out on the bike, I'd recommend taking someone with you. My wife basically wouldn't allow me to go by myself(didn't like it at the time, but really was the smart thing).

Anyway, everyone is different...but it sounds like you're on the right path. Good luck.

Patrick   
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

Kaybo

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Re: Athletics and Post AN Life
« Reply #37 on: May 04, 2009, 07:21:28 am »
Steve~
I agree - start on the trainer!  Even though you are probably already doing it, try walking or running some too as that will help compensate for the balance.  Maybe even (it might be a bit soon for this) by trying some "different" situations - types of surfaces - sand, rocks, uneven ground, etc. - to try to start really challenging that!

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!

petittrv

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Re: Athletics and Post AN Life
« Reply #38 on: May 11, 2009, 06:58:58 am »
Steve and all,

Sounds like you have a good plan and it seems to be working for you.  I'm about 18 months post-op with nerve removal and my balance has moved pretty far down on the list of priorities.

Not that I'll go sar far as to say I've recovered completely at 18 months (I've noticed how long it takes for the brain and nerves to adjust) but these are the only issues I have remaining daily with balance:

1) I "drift" a bit when I walk far distances.  Just a little bit to the left or right as I go.
2) If I am throwing a ball or frisbee, I have difficulty running under it anymore.  I find that when I look up and ose the horizon I get very disoriented.  In fact its about impossible for me to run straight without looking straight ahead anymore.
3) I have never been afraid of heights but I am now very uncomfortable even on ladders (probably as much psychological as physical)

As I said, day to day these don't really stop me from doing anything - just something I have to keep in mind during activities.  Hopefully you'll get a full recovery and these will be moot - just throwing them out as something to watch out for as you progress.

Rick
4.5 cm AN - diagnosed 12 Sep 07; removed 2 Oct 07.  VII to XII Nerve transfer 9 Oct 07; CSF leak repair/eyelid weight installed 16 Oct 07. Deaf in left ear, facial paralysis

TP

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Re: Athletics and Post AN Life
« Reply #39 on: May 11, 2009, 07:30:12 am »
I jumped back into my physical routine about 3 months after my AN was removed. I had double vision at the time and didn't let that stop me. It has now been three years and I am back at tennis as well. However, I have noticed even though I had double vision surgery in 2007 my left eye (the one that had surgery) does not react as well as my right eye. In karate I noticed when I do reverse kicks or use my left side for any side or reverse kicks I just can't see or react as quickly. Since I just started playing tennis again I've noticed that my backhand is not nearly as strong since my surgery due to my vision or delayed reaction to seeing the ball. My husband is telling me he doesn't think it is so much my vision but my delayed reaction. I haven't tried golf (I was never good at golf but love the game) yet but I have a gut feeling that will be even more noticable since my left side seems to be on a delayed time restriction : )
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

Seal

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Re: Athletics and Post AN Life
« Reply #40 on: May 11, 2009, 01:23:08 pm »
Rick,

Thanks for the feedback.   Today marks four weeks after the Grand Event for me, and I'm still working on 1) balance, 2) morning headaches, and 3) fatigue.        Today was particularly challenging especially waking up with a decent headache and balance was unusually bad.     Hopefully this is just one of those days on the road to recovery.   Anyways, I plan to start walking almost everyday unless my energy goes down and I need to back off a bit.      If the walking works out, I'll try the stationary bike next.     My biggest concern is probably still the fatigue.     So I'll try to listen to what the body is saying and try not to overule it with too much excercise just yet.     

From the comments both you and TP are still having issues with eyes and tracking movement while doing your respective sports.     I'm wondering what a pitching deck in 2-3 waves will feel like while I trying fishing this summer!! 

Regards,
Steve
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

Keri

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Re: Athletics and Post AN Life
« Reply #41 on: May 11, 2009, 10:08:05 pm »
the 2 - 3 ft waves seem like great therapy - yikes! don't fall in with the fish.
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

sarahinPA

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Re: Athletics and Post AN Life
« Reply #42 on: June 13, 2009, 08:18:30 am »
yoga- although it can be frustrating at times when you cant balance like others around you, it does help me working on my balance issues. also if your balance is way off i have noticed that using an elliptical machine works well because i have stability with my arms and legs and i get a good cardio workout. i cant run on a treadmill because i have a fear of falling off from my balance.

good luck and remember to push through and it will come but always be safe
2.3cm Diagnosed 12/19/08
Gamma Knife @ UPMC Pittsburgh 1/12/09
.2mm Regrowth 6/2011
Translab 7/29/11 @ UPMC
     temporary paralysis of throat-feeding tube 8 days; SSD; facial numbness; blood clot & pnemonia developed; 11 days hospital stay.

Seal

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Re: Athletics and Post AN Life
« Reply #43 on: June 23, 2009, 02:20:56 pm »
This is now ten weeks since the AN surgery, and I have been back to fishing for at least the last three weeks.   The pitching decks are interesting, and I believe that it is great vestibular training.   Strangly enough, I am not uncomfortable while standing or sitting on board.    Walking on the pitching deck is a challenge as well as even the floating docks.  Last night with the strong nor'esterly winds, the docks were really heaving, yet I didn't feel TOO much worse than normal.  I believe now that the more I work at the balance thing, the better progress I make.   Of course, fatigue can really affect the quality of my balance, and I still have good and bad days.   Overall however, I think that I'll be trying the bike soon, and I've been told that bosu balls are great trainers to improve one's balance.    So hopefully, a combination of all the above will help push results.        Sara, a friend of mine is a yoga teacher, and I will be looking into yoga this fall.     The good news is that after a few hours of fishing on a moving deck, the dock and dry land are a breeze!     Everything is realtive I guess.     The only reason for not pushing the biking yet is because I need to conserve my energy for 1) three little kids & wife  2)  work   3)  all their activities that are in front of mine !!    All in due time...............
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

Keri

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Re: Athletics and Post AN Life
« Reply #44 on: June 24, 2009, 09:41:38 pm »
fishing... biking??? biking... fishing????  sounds like fishing is winning out!

glad you're doing better. 10 weeks already, wow!

keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

 


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