Author Topic: planning my recovery  (Read 6023 times)

val

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planning my recovery
« on: October 20, 2008, 03:28:25 pm »
Hi everyone  I have been diagnosed with a small AN (16mm x 9mm) and with much help from all your posts have decided to have translab surgery.   I am just waiting for a date which they say will probably be in November.   Now that  that decision has been made I'm moving on to my recovery  and would like your views on booking a trip to a tropical beach in February.  Am I being overly optomistic about how I'll feel in 2 or 3 months ???
diagnosed July/07 AN right side 12mm x 3.5mm
2nd MRI April/08 AN 16mm x 9mm
symptoms tintinus, balance issues, hearing loss
scheduled for translab Dec 3/08  Sunnybrook, Toronto
Dr J. Chen - Dr F. Pirouzmand

Jim Scott

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Re: planning my recovery
« Reply #1 on: October 20, 2008, 03:52:25 pm »
Hi, Val:

Welcome!  Having an acoustic neuroma is no picnic and I'm sorry you've received that diagnosis but we're pleased you've chosen to become a member and post here. 

I'm not prescient but I don't think you're being overly optimistic regarding your potential recovery from 'Translab' AN removal surgery. Of course, every patient is unique and yes, unpleasant things could happen during and even after your surgery, as you must know if you've read these forums for any length of time but generally speaking, with an experienced surgeon and team, 2 to 3 months post-op should find your strength back and feeling well enough to sit on a beach.  Even with a few post-op complications, that should not be out of the question.  Of course, this is pure speculation, not medical advice.  Still, I think your positive attitude is very beneficial and having that tropical beach trip to look forward to can only help your recovery.  It sure would work for me!  :)

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.

Kaybo

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Re: planning my recovery
« Reply #2 on: October 20, 2008, 05:08:22 pm »
Val~
I am jealous of you - we LOVE to get away anywhere topical!!  ::)  I had kind of a rough surgery/recovery and we went to Cancun Labor Day weekend the year I had surgery.  I had surgery in December...I realize that that is much longer than you are talking about, but if I were just going to go lay on the beach, I certainly could've done it sooner!  I was still EXTREMELY unsteady and it was there that I finally found the analogy to describe how I walked - "like a drunk person!"   Everyone's drunk in Cancun and I think everyone just assumed that I was sloshed too!!  :D  LOL!!  Good attitudes and plans/goals to work towards go a LONG way in helping with recovery!!

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!

MAlegant

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Re: planning my recovery
« Reply #3 on: October 20, 2008, 05:11:02 pm »
I think you should book it.  It will give you something to work toward, during recovery.  I'm 3 months out and mostly I can do whatever I did before.  A tropical beach may just what you need, but if you have balance problems, walking on the sand could be challenging.  I would still do it.
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.

lori67

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Re: planning my recovery
« Reply #4 on: October 20, 2008, 07:35:14 pm »
Hi Val.

I had my surgery on Feb. 20th of last year and went to Pensacola, Florida on April 1st - so just a little over a month...  it was a little challenging, but well worth it.  The best thing I did was get some good sunglasses to keep sand, sun and wind out of my AN eye (I have facial paralysis, so I can't blink).  Walking in the sand was a little tougher than usual, but it was a very good vestibular workout and I figured if I fell, it wouldn't hurt much!   :D

I went on that trip and then another week long trip to the NJ Shore at about the 4 1/2 month post op point.  That one was easier.  I found that these trips were good motivation for me to get better.  You have to remember to pace yourself though, because you will get fatigued easier than what you're probably used to, but pick a nice, relaxing tropical location, and that shouldn't be a problem!

You might want to get trip insurance though, just in case something medical comes up and you can't go.  Wouldn't want to lose money on it.

I know for myself, if a tropical beach didn't motivate me, nothing could!  And if you need some help carrying your suitcases - I think I'm available in February!   ;D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

sgerrard

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Re: planning my recovery
« Reply #5 on: October 20, 2008, 07:56:28 pm »
2 to 3 months post-op should find your strength back and feeling well enough to sit on a beach. 

It's a tough job, but someone has to do it!  ;D

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

leapyrtwins

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Re: planning my recovery
« Reply #6 on: October 20, 2008, 09:34:08 pm »
Val -

I agree with the others - book the vacation.

You should be feeling well enough by 2 - 3 months post op to enjoy it.

And if you don't, I could always go in your place  ;) LOL

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

pswift00

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Re: planning my recovery
« Reply #7 on: October 21, 2008, 07:50:32 am »
Go for it.  I had translab on August 15th for a 3 cm AN, and subsequent nerve graft surgery on 9/30 to repair the severed facial nerve.  I feel completely normal now and even (unfortunately) working full time.

Trackman

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Re: planning my recovery
« Reply #8 on: October 21, 2008, 09:03:15 am »
I had translab 3/4/08, went back to teaching last week of April, went to Las Vegas first week of June, to the beach the week of the 4th of July. In Las Vegas, balance was still alittle off, held on to my wife, When I got tired, I went to sleep. Take the trip but plan on taking naps.

MAlegant

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Re: planning my recovery
« Reply #9 on: October 21, 2008, 09:58:56 am »
So, now that we've all given you our advice, how many of us are allowed to accompany you?
 ;D
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.

leapyrtwins

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Re: planning my recovery
« Reply #10 on: October 21, 2008, 03:31:50 pm »
So, Val, this is a little off topic, but where are you sheduling your surgery and with who?

It's nice to know this information for the newbies who will follow you.

Hope you don't mind my asking. 

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

val

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Re: planning my recovery
« Reply #11 on: October 21, 2008, 06:36:59 pm »
Thanks so much everyone.  I'll get the biggest steamer trunk I can and take you all with me or failing that I promise to have a drink on the beach for each one of you.
Hi Jan - Don't mind questions at all.  Guess I should have given my details before.  6 years ago I had a sudden hearing loss in my right ear.  I noticed I couldn't understand anyone on the phone.    I had just started kayaking and thought maybe I had got water in my ear because of the full feeling.  My Doctor gave me nosedrops and sent me for a hearing test which they said was not that bad.   When I didn't get any real diagnosis I just decided to live with it (for 5 years) until my sister started getting on my case because I was asking them to repeat things all the time. 
I went back to my Doctor in July/07 had a CT scan which showed nothing and then a MRI with gadolinium which showed a AN 12mm x3.5mm. 
I was referred to Dr. Joseph Chen at Sunnybrook Hospital in Toronto, last October/07 and he suggested I watch and wait for a year. 
I had alot of dizziness and my hearing seemed to be getting worse so I had another MRI in April/08 and it showed an increase to 16mm x 9mm.   
I have spent the time from last July/07 when I first found out about the AN researching.  Thanks to all of you here and your many posts and web links I feel I have made a very informed decision.  I attended a day long conference put on by the Canadian AN Association and found it very helpful as well.  I went back to Dr. Chen in August/08 and made the decision to have surgery.  Because my hearing is pretty much gone we have decided on translab.   
I am feeling a little freaked out today though.  I have not had any facial numbness this whole time but last night I noticed a funny sensation in my cheek and it has continued all day.  I'm feeling a little bit like Cinderella, worried that I stayed to long at the ball.   Just wondered if I should have done something sooner.   I called Dr Chen's office to see if a date has been set yet but haven't heard back yet.

Val
diagnosed July/07 AN right side 12mm x 3.5mm
2nd MRI April/08 AN 16mm x 9mm
symptoms tintinus, balance issues, hearing loss
scheduled for translab Dec 3/08  Sunnybrook, Toronto
Dr J. Chen - Dr F. Pirouzmand

MAlegant

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Re: planning my recovery
« Reply #12 on: October 22, 2008, 06:18:11 am »
Hi Val,
Don't second guess what's happened in the past.  Nothing you can do about it anyway.  You can't imagine how many times I have wished that I paid attention to my symptoms sooner.  Look forward, not back; you have surgery scheduled, they'll get it out and you will recover and continue with your life. 
All best wishes,
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.

calimama

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Re: planning my recovery
« Reply #13 on: October 23, 2008, 02:04:16 pm »
Hi Val,

Welcome fellow Canuck. I am also from Toronto and had my surgery in June of this year at Toronto Western.

I would definitely have gone anywhere with ocean and palm trees 2-3 months after surgery (even though i would have had to take special precautions with eye -which won't close!). 

My only caution would be... (sorry, i hate to be the one, unless i missed similar cautions in other replies).

1. Your date is not fixed and can easily get bumped back by weeks (and can get moved more than once!). My date got changed twice, pushing me back 3 weeks.  But i was shocked when they moved the date within a week of my scheduled surgery! I had so many things worked out around the original date. I asked the booking nurse if it would get moved again (after the first time) and was told that i must be "flexible" and that sometimes dates get moved many times. Stuff happens! It was a huge disappointment, but it all worked out in the end, as it does.

Feel free to PM if you want to chat.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

Jim Scott

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Re: planning my recovery
« Reply #14 on: October 23, 2008, 04:05:28 pm »
Val:

For what it's worth:  I had gradual hearing loss in my left ear over a five-year period - I ignored it.  In the six months prior to my AN diagnosis, I would sit in a darkened room next to my wife almost every night, watching TV and experiencing intermittent shooting pains on one side of my head -  I ignored it.  Over that six-month, pre-diagnosis period, my appetite severely decreased as my ability to taste became less and less useful - and I more or less ignored it.  Finally, the imbalance issue became glaringly obvious to my wife, as well as my loss of appetite and resultant loss of weight.  She insisted I see our PCP.  I did.  One MRI later, I had my diagnosis: a 4.5 cm AN.  Surgery and radiation followed.  I did very well.  I was driving again within a fortnight and now, more than two years post-op, I'm basically 'as good as new'.

Sure, I should have acted on my symptoms sooner.  I know that now.  However, excellent surgeons and much prayer helped me come through my AN experience with flying colors, so to speak.  As Marci so astutely commented, we can't change the past so why fret over it?  This gains us absolutely nothing.  I concur with Marci ('MAlegant') - look ahead to your upcoming surgery and stay focused on your future, not the past.  You'll likely do just fine and of course, you'll always have the gang here cheering you on.  I'm the older guy in the second row.  ;)

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.