Author Topic: What can loved ones do to assist through recovery and beyond  (Read 5410 times)

Emcee

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What can loved ones do to assist through recovery and beyond
« on: December 03, 2008, 05:54:41 pm »
Hi Everyone:

I haven't posted much, but I have logged in almost 10 hours since Ken's tumour was diagnosed in June!   I have learned a lot of valuable information and both Ken (1cANAdian) and I feel we're ready for the translab surgery next Monday.

I would appreciate receiving your advice on how I can best assist Ken through the recovery process.  I will probably continue to work half days while he is in the hospital, but after that will be off work until January 5. 

Look forward to hearing from you.

Michelle

Kaybo

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Re: What can loved ones do to assist through recovery and beyond
« Reply #1 on: December 03, 2008, 06:51:31 pm »
Michelle~
My sweet hubby would say to just be willing to be VERY patient for whatever might come along...I reverted back to my childhood and would not even acknowledge him - very hard for him, but he stuck by me!

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!

leapyrtwins

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Re: What can loved ones do to assist through recovery and beyond
« Reply #2 on: December 03, 2008, 08:46:09 pm »
Hi, Michelle -

I don't believe I've "met" you yet, but I do know Ken - at least through his posts  :)  I think it's great that you care enough about Ken to ask us for advice.  Supportive spouses are a wonderful thing.

I've never been a loved one who assisted an AN patient post op, but I did have loved ones assist me after my surgery - specifically my parents and my sister.

All I can say is try to be there - both physically and emotionally - for Ken throughout his recovery.  I know from experience that recovery takes a lot of patience.  It can also be frustrating at times since "normal" becomes a little different than it used to be.  Fatigue is also a major issue for a while.  There were many times during my recovery where I found myself getting a little short-tempered due to my fatigue, my frustrating, and my impatience.  It was great to have one of my family members not only be here physically to do the things I couldn't do - like drive, clean my house, get my kids off to school, etc., - but it turned out to be just as important to have someone to vent to (or a shoulder to cry on) if the situation warranted it.  It was also very nice to have someone here to encourage me on a daily basis and celebrate all the little steps of recovery with me.

AN surgery is a major surgery and it takes time to recover, but Ken (and you) will get through this.

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

Omaschwannoma

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Re: What can loved ones do to assist through recovery and beyond
« Reply #3 on: December 04, 2008, 06:17:45 am »
Below is a post I did awhile back for useful information and helpful tips for the hearing impaired and those who are not.  I see Ken is having translab approach and probably will be left with SSD. 

http://anausa.org/forum/index.php?action=search2 

The hardest part of recovery is knowing there is an inner turmoil happening as your body works overtime just to keep you upright.  I'm sure you've read all about the balance system here in many posts here.  The eyes, brain, neck, feet, vestibular nerve and ears are involved and when one is taken away that system goes into hyperdrive.  The patient feels the chaos, but doesn't outwardly show the chaos, so most tend to say "You look well or great." and this doesn't help those recovering.  They might take it as not being understood. 

Bite your lip as often as you can and let the "grumpy" comments roll off your back as the patient also is dealing with what is lost, what they can no longer do well.  Until healing is complete, their world as they once knew it is hard to reach.  Some of us are back to what we refer to as a "new" normal when our vestibular nerve is severed. 

I think it great you are asking ahead of time and remember we are here for the caregiver too, as it's not all about us, we know we couldn't have gotten as far as we did without you! 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

wendysig

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Re: What can loved ones do to assist through recovery and beyond
« Reply #4 on: December 04, 2008, 08:04:16 am »
Hi Michelle,
I am very impressed that you care enough to post and ask us for advice too.  As Jan said, AN surgery is major surgery and he will need your emotional support more than anything else.  Patience on both your part and his,  is so important during recovery.  Based on his posts, I would say Ken must be one heck of a guy, but don't be surprised if he is out of sorts and reallly not himself at first.  You both need time to adjust to his new normal and he is apt to be cranky because of fatigue for a while, and it is easy to become impatient with the speed of progress during recovery.  My advice is the best gift you can give him is your patience.  The AN experience is a lesson in patience like you've never seen before.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Carson

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Re: What can loved ones do to assist through recovery and beyond
« Reply #5 on: December 04, 2008, 08:25:49 am »
Hi Michelle,

I assisted in taking care of my father who is now a month of post op!!  He is doing wonderful I have to add!!

The best advice I can give is (as everyone else will say) PATIENCE!!!  My father's complaints after surgery were his muscles (in his arms especially ) and  just being extremely exhuasted. We did lots of massages!   We are all a bunch of jokers so being able to laugh helped alot!!!  Also my Dad(58) is very independent not impressed with being stuck at home...so we were very sure to not tell him he could not do things......of course he knew better than to do to much or think he could get away with doing to much!!  ;D  From the first night home he walked right up the stairs and went to bed when he was ready.  He has been cooking since day one home and takes walks around the block twice a day by himself. 

Oh and my Dad hated opening his eyes and seeing everyone starring at him!!!  LOL  That really irritated him...he is still yelling at him mom and brother when the stop to see him!!!   ;)

Just be supportive!! I know everyone recovers differently....alot depending on how much they can tolerate!!  We have really been blessed, no headaches, no nausea, no complications.  Paraysis is getting better (that is probably the worst for my Dad, he is a talker so saying certain words irritate him). 

Most important take care of yourself!!!  Take time for you too....if someone comes over to visit...take that time for you!!  My mother did and it kept her sanity!! :)

I will keep you all in my prayers!!
((hugs))
Carson
Loving daughter to my
Father recovering from AN surgery
9/4/08 at The Ohio State University Medical Center
Dr. Welling and Dr. McGregor
GO BUCKS!!!

Debbi

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Re: What can loved ones do to assist through recovery and beyond
« Reply #6 on: December 04, 2008, 12:15:03 pm »
I'll ditto what everyone else has said - patience!  Willie was and continues to be my rock.  He put up with my many ups and downs both before and after surgery and never once lost his patience with me.  He has reassured me countless times about my then-droopy face and never gets annoyed when I ask him to lower the volume on something or to repeat himself.  I will never forget that his first words to me in the recovery room were "you are beautiful!"  Even though I knew that I looked like something that had been drug through the country behind a truck, I know that his words were from the heart and they meant the world to me.  This whole experience has brought us even closer together. 

You sound like a wonderfully supportive spouse - you will both be fine.

Debbi, eternally grateful for an amazing spouse and family
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Sue

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Re: What can loved ones do to assist through recovery and beyond
« Reply #7 on: December 04, 2008, 12:32:00 pm »
Love, love and lots of love.   ;) ;D

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
My Blog, where you can read my story.


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The only good tumor be a dead tumor. Which it's becoming. Necrosis!
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Jim Scott

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Re: What can loved ones do to assist through recovery and beyond
« Reply #8 on: December 04, 2008, 03:23:03 pm »
Hi, Michelle:

It would be redundant of me to state that you'll need patience, most of all.  However, in conjunction with that patience, you'll need the understanding that - as Jan so cogently stated - your husband has just been through major surgery and might now have to deal with deficits he did not have before the operation, which will often generate some level of frustration on his part that may be taken out on you, his spouse, who is only trying to help  That kind of dichotomy can strain a relationship but again, the 'P-word' combined with some understanding of Ken's position will smooth the process, which will eventually resolve as he heals and adapts to whatever he must.  I speak from experience (as a post-op AN patient). 

Due to his inevitable post-op fatigue, you may have to do some necessary, mundane things that he used to do...but don't try to 'baby' him.    In some cases, he may try to do too much and then practically collapse from the fatigue that will follow any over-exertion.  He'll soon learn to 'listen to his body' and pace himself, as most post-op AN patients do.  Nagging him to 'take it easy' will likely be met with assurances of "I'm fine!" and only motivate him to 'prove' to you that he is just as good as before his surgery.  That can lead to set-backs. 

In other words, along with being beatifically patient, do try to help Ken - but don't try to 'manage' him...and remember that 'this too, shall pass'.  :)

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.

arkansasfarmgirl

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Re: What can loved ones do to assist through recovery and beyond
« Reply #9 on: December 05, 2008, 11:38:04 am »
The hardest part of recovery at my house is that I am kind of turned inward a little bit, trying to heal myself and my hubby is going through a very difficult ordeal of his own and I don't have the energy to support him like he needs.  Ironically enough, he has/had otosclerosis.  He had surgery in 1 ear several years ago, and was needing surgery in the other (which we were putting off until after I got recovered).  But then while we were in L.A., he lost the hearing in his "good" ear and we don't know why.  I have to yell at him or he can't hear me, which is frustrating to both of us.  I can't talk to him because he can't hear me and with one side of my face paralyzed he can't read my lips.  LOL  He has a dr appt monday and hopefully they can figure out and fix the problem.

So my advice:  don't go deaf while your hubby is recovering. ;)

Vonda

Syl

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Re: What can loved ones do to assist through recovery and beyond
« Reply #10 on: December 05, 2008, 02:29:57 pm »
Michelle,

Good luck to you both. I hope that the surgery is complication free.

What I found I needed alot was to get out and go walking around the neighborhood, even if it was just around the block or up to the corner. I couldn't do or didn't feel like doing much of anything else for a while, except walking. It helped my equilibrium, and it helped me keep my sanity. But, I couldn't do it alone. I needed someone to hold on to until I got my cane. Even then, I didn't want to go alone because one wrong step off the curb or a slight incline on the sidewalk could get a massive headache going in an instant making it difficult to get back home on my own. So, as soon as Ken is up to it, he'll need you to acompany him.

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.

Emcee

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Re: What can loved ones do to assist through recovery and beyond
« Reply #11 on: December 05, 2008, 11:15:15 pm »
Hello:

Thank you very much for the advice.

Ken's surgery time was confirmed today...7:20 a.m. on Monday. 

I will keep you updated.

Michelle


carter

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Re: What can loved ones do to assist through recovery and beyond
« Reply #12 on: December 06, 2008, 08:04:38 am »
just being there .....  i have not been treated yet.  but i have experienced the emotions - friday i broke down in a doctor's office  ... a pat on teh back and sitting quietly with me .... just knowing tha she is here..... 

my prayers are with you

carter
Diagnosed in fall of 2008 with 1.6 * 2.9cm AN on left side. 

Scheduled CK at Oklahoma Cyber Knife in December, 2008 and decided not to proceede on 2nd date that CK was scheduled.  I fired them.

CK performed at St John's Hospital (Tulsa)Jan 2009

wendysig

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Re: What can loved ones do to assist through recovery and beyond
« Reply #13 on: December 06, 2008, 08:46:45 am »
Carter,
I know this is a frightening experience and did my share of crying prior to my own surgery.  It truly is an emotional rollercoaster ride.  I'm glad to hear your wife is supportive and caring.  You need to be there for each other probably more now, than ever before.   Hang in, you will get through this.

Best wishes,
Wendy

Emcee - Sorry for the hijack -- stometimes it has to be done.
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MAlegant

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Re: What can loved ones do to assist through recovery and beyond
« Reply #14 on: December 06, 2008, 01:07:44 pm »
The things I appreciated from my husband were:
unconditional love
patience
willingness to do whatever I asked and help me with whatever I needed
the way he kept track of the drugs I was taking
his sympathetic ear
his strength, both physical and emotional, that enabled me to lean on him in every way
did I mention unconditional love?

Good luck and good thoughts,
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.