Author Topic: 5 1/2 Month Update  (Read 3823 times)

mandy721

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5 1/2 Month Update
« on: January 24, 2010, 12:32:58 pm »
Hello all,
I haven't posted for a while, but continue to come and read the boards.  I want to give an  update on Ken's progress.  It has been 5 1/2 months since his surgery and he is doing relatively well.  Back to work since the beginning of November after three months of leave.  Transitioning back was tough, but he made it through the normal workday and went to sleep very early those first couple of weeks.  Prior to surgery, he worked crazy long hours, but now he is doing a normal day.   Getting back to work, he noticed some memory issues related to names and using computer programs, the weakness in his writing hand makes it more difficult to keyboard accurately and quickly, and taking notes in meetings is slower and less legible.    Looking back he thinks another month or two of leave might have been beneficial, but things are going OK.

So far there hasn't been any improvement with his face.  Last appointment, the doctor felt there was more tone on the right side, but no signs of movement. We went to Long Island before Thanksgiving for an appointment with a facial therapist and Ken does the recommended exercises.  The eye is a constant problem.  He continues to use drops throughout the day and ointment and Glad Press & Seal at night.   Since the weather has been cold, I  learned that the  eyelid with the weight gets very cold.  I never would have thought of that!  We are both hopeful that there will be some improvement in his facial function in the next few months.

His balance is better, but still somewhat wobbly when turning his head suddenly or making sharp turns while walking.  Ken is pretty steady on his feet and still uses a cane.  Thankfully there haven't been any falls, but it is something I worry about. He is back to his sporadic yoga practice and finds it helpful.  I wish he would practice more.

Over the past few months, he usually wakes up with a headache.  Most days it recedes or goes away after his morning analgesic cocktail, coffee and juice!   Tinnitus has also cropped up occasionally, usually at night.  He is still adjusting to being SSD.  He has the Cross hearing aids and they do help when he wears them, but he doesn't wear them a lot.  The SoundBite sounds promising and we are following the stories about it.  At this time, Ken isn't willing to consider the BAHA.

So that's about it for now.  Another thank you for all the support and advice we have gotten here.

Miranda



Husband diagnosed 5/30/09 with 3.2cm right AN
Surgery at  Columbia Presbyterian 8/4/09
Platinum eye weight implant - 8/17/09
17 days in hospital and rehab
SSD, facial weakness, some tinnitus, headaches , balance and eye problems

another NY postie

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Re: 5 1/2 Month Update
« Reply #1 on: January 24, 2010, 01:52:15 pm »
Mandy, Thanks for the update, it is so nice to hear how Ken is progressing towards wellness and recovery...I know it seems to take so much longer than one ever expects and there are those babystep backwards that are disconcerting.  Having just returned to work myself, it  can relate to his re-entry - iti s somewhat of a shock to the system - all the noise and stimuli is hard on a healing brain.  I have high hopes that the next time I see him at the NJ/NY brunch that he will have made even more improvements.  Keep keeping us posted!
Cheryl
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Jim Scott

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Re: 5 1/2 Month Update
« Reply #2 on: January 24, 2010, 03:13:59 pm »
Hi, Miranda ~

We all appreciate updates, even when everything isn't quite 'perfect'.  Thanks for Ken's.  

Ken seems to be recovering at a near average pace,.  Unfortunately, 'average' in the AN world equals 'glacial' in the real world.  However, time really does heal and help so I trust Ken will continue to improve in all of his deficient areas.  Tinnitus is a constant companion for the majority of AN patients and headaches also seem to 'come with the territory', but can usually be handled, as Ken does, with medications, sometimes including chocolate.  ;)  

Please, give Ken our warm regards - tell him he's doing just fine and will only improve, over time.  
« Last Edit: January 24, 2010, 03:37:20 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.

JerseyGirl2

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Re: 5 1/2 Month Update
« Reply #3 on: January 24, 2010, 03:31:16 pm »
Hi, Miranda,

I'll join with Cheryl in hoping that Ken will have even better progress to report on by the time of the next NY/NJ brunch! It sounds as though he's coming along well and while I certainly empathize with his frustrations please tell him not to be too hard on himself.

Hope the improvements continue at a good steady pace.

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

sgerrard

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Re: 5 1/2 Month Update
« Reply #4 on: January 24, 2010, 06:11:59 pm »
I know everyone wants to think in terms of days, or at most weeks, or at most most months. But I will offer this opinion, based on reading a lot of posts over the last several years: Year 2 is better than year 1. So tell Ken to keep his eye on the prize, he will get there - however long it takes.

Best to you both,

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.

alicia

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Re: 5 1/2 Month Update
« Reply #5 on: January 25, 2010, 02:48:04 pm »
Year 2 is better than year 1. So tell Ken to keep his eye on the prize, he will get there - however long it takes. Steve

I like that  ;)

Miranda - I am glad to hear from you.  You both have been in my thoughts all winter.  I too hope for a day that Ken can rejoice.  I agree the ringing is difficult at times as well as the SSD being annoying and confusing. 

Restfull sleep wishes coming your way, Alicia
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

jaylogs

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Re: 5 1/2 Month Update
« Reply #6 on: January 25, 2010, 06:46:48 pm »
Miranda, thank you loads for the update! I hope that all the successes outweight the other issues that Ken is presently dealing with and will be praying for you and him that these will work themselves out!! Take care and keep us all posted please!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Debbi

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Re: 5 1/2 Month Update
« Reply #7 on: January 26, 2010, 02:49:44 pm »
Hi Miranda -

So good to hear from you.  If it helps, I didn't really see any noticeable improvement in my face until about month 7.  Did Ken go to Good Sam for therapy?  I went to them last January and thought they were good.  Just tell Ken to be careful not to overwork his face as this can bring on synkinesis.  I am sure the therapist probably went over this already.

And tell Ken that if he manages the Tree Pose, I'm going to be SO jealous!!   ;D

Debbi
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

kim.a

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Re: 5 1/2 Month Update
« Reply #8 on: February 16, 2010, 01:47:30 pm »
Hi Mandi,   I am 5 months post-op and recently back to work also. A lot of what you said about your husband sounds so familiar!  I'm also a little apprehensive about the BAHA procedure, I think mostly because I expected a quicker recovery from surgery and I can't imagine going through even a minor procedure so soon. Like your husband,  I'm very lucky to have a great spouse and family support system and I know that is why I feel as well as I do but I thought I would be better than this by now.  I only work part time and its a good thing because I don't think I could do any more than that.  I hope things improve for your husband and I wish you well. I know the job of a caregiver is not an easy one! 
   

leapyrtwins

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Re: 5 1/2 Month Update
« Reply #9 on: February 16, 2010, 08:39:29 pm »
kim.a -

I, too, was hesitant to sign up for a BAHA implant after my AN surgery.  But the two are like bananas and pears - the similarities are few and far between.

BAHA surgery is a simple, outpatient surgery; generally no hospitalization required.  I had mine with local anesthesia and was fully awake.  I walked out of the hospital after my procedure.

Something to consider.

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

ombrerose4

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Re: 5 1/2 Month Update
« Reply #10 on: February 26, 2010, 01:02:47 pm »
I have to agree with Jan, BAHA surgery is in a totally different category than AN surgery. Alittle soreness for a few days but that's it. I am also 5 1/2 mos. post op and had my BAHA surgery 1/4. I am looking forward to my BAHA GOTCHA date. For me it was the right decision, I feel so out of the loop being SSD. It's something to consider in the future if you are bothered by what I call "the loneliness of SSD". Good luck!
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010