Author Topic: Waiting for Surgery - Supporting my wife  (Read 18117 times)

bsharpintexas

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Waiting for Surgery - Supporting my wife
« on: June 03, 2009, 03:41:24 pm »
Hello everyone! First I would like to say thanks to everyone involved in this forum. It has been very helpful and easy to use. I really appreciate all the supportive comments.

Let me tell you about our situation. My wife, Pam and I found out about her AN about 3 weeks ago. It's 3.6cm. Surgery is scheduled for 6/15. Pam is 41 and in pretty good health. She has decided on the TransLab to try and reduce the risk of facial nerve damage. Pam is a Speech Therapist and grade 3 + facial weakness could affect her ability to do her job. We have 3 great kids 12, 6, and 1 1/2 (I know, what were we thinking?)

My questions are about preparing for the surgery and supporting my wife. Obviously, everyone is different but I would love to hear your comments. Here are my questions;

1. What would you suggest to prepare for surgery?
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
3. What are some good things to bring to the hospital for the patient?
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?

I will probably have more questions. Thanks in advance for your responses.

Bryan

Kaybo

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Re: Waiting for Surgery - Supporting my wife
« Reply #1 on: June 03, 2009, 04:19:29 pm »
Bryan~
First of all, let me say welcome - to the place where you really don't want to be!!  It is so great that you are so involved and there for your wife like this - I also have a VERY supportive, loving husband who has gone above and beyond in this whole AN journey!  Where in Texas are you and where is the surgery going to be?  I also live in Texas - we are at the top but we get around a LOT!!  I would be more than happy to talk to you or your wife anytime.  Just PM me your info...I am in a hurry right now, but I will write more later!

K

PS - Check out my blog - world icon on left!

Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
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msmaggie

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Re: Waiting for Surgery - Supporting my wife
« Reply #2 on: June 03, 2009, 07:41:59 pm »
Hi Bryan,
There are several of us on the forum who are in TX, some of whom are in Houston, a couple a little more far flung.  You have come to the right place for info.  Where are you in TX?  It sounds like you have some good support for after the surgery and that is a good start.  As for as what to bring, there are a few things to start with.  Pajamas that button, soft, fuzzy socks (hospitals are cold!), chapstick, your own pillow because surgery can be rough on the neck muscles, maybe some moist wipes, and the usual toiletries.  She will feel much better after that first shower!
Keep us posted and good luck!

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

sgerrard

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Re: Waiting for Surgery - Supporting my wife
« Reply #3 on: June 03, 2009, 08:26:03 pm »

4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).


F3D. :)

That is, the first three days don't count. Most patients experience a short spell of crazy symptoms as they come to from the anesthetic and their head recovers from the shock of surgery. Just about any symptom is possible during those 3 days, and it doesn't mean anything has gone wrong. Most of it passes in a few days.

Welcome to the forum.

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.

Kate B

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Re: Waiting for Surgery - Supporting my wife
« Reply #4 on: June 03, 2009, 08:51:30 pm »

3. What are some good things to bring to the hospital for the patient?

I will probably have more questions. Thanks in advance for your responses.

Bryan

Hi Bryan,
Welcome and questions are encouraged:)

There are a couple of threads about what to bring that I will post.

http://anausa.org/forum/index.php?topic=34.msg154#msg154

http://anausa.org/forum/index.php?topic=6309.0

Hope this helps..

Kindest Regards,
Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

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leapyrtwins

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Re: Waiting for Surgery - Supporting my wife
« Reply #5 on: June 03, 2009, 11:08:40 pm »
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?


Hi Bryan -

I picked two of your five questions because it's after midnight here in Illinois and I have to get some sleep.  This way I can't post into the wee hours of the morning  ;)

Anyway, side effects immediately after surgery pretty much vary from patient to patient.  One constant about AN patients is that we are all unique.  We generally share some commonalities, but we have our own AN Journeys.  Post op I had no pain, I had no headache, I had very slight facial nerve damage.  I had extreme nausea and dizziness, I aso had double vision and was permanently SSD (single-sided deaf).  I was extremely tired - which makes sense after brain surgery that lasted 7 1/2 hours.  I also had "metallic mouth" - basically taste buds that were out of whack.  I found that once I was mobile, my balance was definitely "abnormal".

The good news is, I got better each and every day.  Some days it was one step forward and two steps back, but I did make progress.  The only lasting side-effect I have is SSD - and most people adjust or find a solution like a TransEar or a BAHA (basically hearing aids - another story for another day).

The idea of your mother-in-law staying for 3 weeks sounds very reasonable to me - especially in light on the kids, specifically the youngest one.  Your wife will be very fatigued and she will have "restrictions" - no lifting heavy objects, no bending at the waist, etc., for a little while.  She won't be doing housework, driving, cooking, etc., for a few weeks either.  So I say, take all the help you and she can get.

Good luck to you and to Pam, and welcome to the forum  ;D

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

moe

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Re: Waiting for Surgery - Supporting my wife
« Reply #6 on: June 04, 2009, 12:01:59 am »
Hi Bryan,
That was great of Kate to post those "old posts."
That's another great thing about this forum. You can do a search and come up with old posts.

I had translab surgery and had a mother of a headache post op, but I thought this was the norm for this type of surgery, whatever approach they use.
My suggestion would be to help her keep the pain under control, if she has those bad headaches.
She is young and in good health, so she won't look "sick." Pain is so subjective. My pain really was a 10 on the 1-10 pain scale, and I didn't get a good handle on it. Ah well, live and learn and pass on the info!
Don't be afraid to ask for whatever is needed, if IV morphine is needed- so be it.

My headaches did subside after weeks of pain med.
Everyone is different,and maybe she won't even have headaches!
And of course there is the post op balance/dizziness issues, which vary with everyone. And that too subsides. Throws some people for a loop. Others have little to no balance/dizziness issues.

So there you have my take on some of this.
Keep asking away. THat's what we're here for.
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

suboo73

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Re: Waiting for Surgery - Supporting my wife
« Reply #7 on: June 04, 2009, 07:08:46 am »
Hi Bryan!

I can't help with any of your questions, but want to say welcome.  (Sorry your wife had to join this crazy AN club!)
My best to you and her as you search for your answers.

Here - the FOLKS are FANTASTIC!  Post your questions and you will have responses, as you can already see.
I am here with my sister...strange, isn't it?   ::)

My thoughts and prayers to you and Pam on 6/15.

Sincerely,
Sue
suboo73
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9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

grega

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Re: Waiting for Surgery - Supporting my wife
« Reply #8 on: June 04, 2009, 08:31:46 am »
Hi Brian and welcome,

All your questions, as well as all your future questions, are very important, so don't hold back.  And I know you'll get lots of great feedback from this wonderful forum.

2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
Suggest you keep life as normal as possible leading up to the 15th.  I realize that's easier said than done, but important nonetheless.  Also, tell Pam to write to all these fine folks here.  And of course, do as much fun stuff as you can with family and friends.

3. What are some good things to bring to the hospital for the patient?  Take yourself as often as possible.  It meant so much to have my wife there every day.  Not many other visitors, but that's OK.

4. What are some of the side effects we can expect immediately after surgery?
As others have mentioned, I too didn't feel like doing anything, including eating, for 2-3 days .... good for a diet, huh?  Balance will be kaput for a few weeks .... perhaps longer ... so arrange balance phys therapy starting several weeks after.

5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?
Well, I don't see how anyone on this forum can answer that ....  ;D (just kidding).  I think any help for you will be tremendous, specially with your 3 kids.   

BTW, on this forum, word travels fast .... for upbeat, positive reasons.  There is an AN calendar on which are listed dates (surgery, MRI, milestones, etc).  If Pam would like her name and date on it, I feel sure that she will get lots of kind responses.

All the best to both of you .... and keep ;D-ing !!!!!!!!!

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

CHD63

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Re: Waiting for Surgery - Supporting my wife
« Reply #9 on: June 04, 2009, 08:41:12 am »
Hi Bryan and Welcome!

Although I wish you had not needed this Forum, please know that you will find a wonderful group of caring people here, who will answer any and all questions ..... and we are genuinely concerned about all of our fellow ANers and their caregivers!!

You already have many good answers and links to more answers, but here are my thoughts:

1. What would you suggest to prepare for surgery?
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
3. What are some good things to bring to the hospital for the patient?
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wifes Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?

1.  Keep busy!  It helped me and my husband to focus on having things done beforehand that I knew I probably would not feel like doing afterwards.  Around the house that was freezing some "quick" meals, cleaning bathrooms  :-[, paying bills, etc.  Outside of the house that was taking a couple of short trips.  Although I did not know it at the time, wish I had gone to a movie because now I am afraid of the loud sound systems in theatres.  Physically there really is not much to do to prepare, except for following the doctor's pre-op orders the day before.  Be sure to check regarding any medication she is taking, e.g. Aspirin.  Many meds that are potential blood thinners need to be stopped 10-14 days ahead of time.  Mentally it helps to think about other things ..... if time, read a good book, etc.

2.  See answer for #1 ..... short trips/excursions for the whole family.  Try not to "hover" or say things like "soon you won't be able to do ....."   :)  Keep the conversation as normal/routine as possible.

3.  Someone has already said it, but Chapstick!  Somehow it was the one thing that bugged me post-op until my husband went after it!  If she is like many of us, books, magazines, and newspapers were not terribly useful (some of us had double vision for several days afterwards).  Bright cheery flowers were a wonderful uplifter for me, as well as the cards from friends and family.  A picture of you and/or the kids would be good.

4.  As Jan already said side effects are all over the ballpark.  I had some nausea immediately upon waking up.  I had double vision for several days.  As Steve said F3D do not count and she will generally feel pretty lousy.  I had no severe headaches but did have severe dizziness and balance issues.  I used a walker or hung onto someone's arm for the duration of my hospital stay but quickly learned to navigate on my own once I was in my own house.

5.  As for the 3 weeks (which really translates into 2 weeks at home), unless your youngest is an extremely docile child, I would hope someone could help out past that timeframe.  Universally it seems that all of us share an increased need for rest .... and that is pretty hard to do with a little one.  This is all assuming Pam has a smooth, uneventful recovery.  It is most likely that she will have balance issues for quite a while afterwards and possibly continuing headaches.  So, I hope you can arrange for additional help, if you find it necessary.

I certainly will keep both you and Pam in my thoughts and prayers.  Be sure to keep us informed as the time comes.  ..... and ask away!!!

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

Debbi

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Re: Waiting for Surgery - Supporting my wife
« Reply #10 on: June 04, 2009, 09:36:40 am »
Hi Bryan -

Well, sorry to have to join the welcome wagon for you and your wife.  Glad you found us, though.

I can tell you that the best thing my husband did for me, both before and after surgery, was just to listen, to hold my hand, to be there when I needed someone to lean on.  Oh, and when he came into the recovery room, the first thing he did was to tell me that he loved me, and that I was beautiful (even though my face was swelled up like a watermelon, I was wearing a turban, and I had tubes hanging out of me all over the place).   ;D  He did tell me later that he almost passed out in the recovery room when he saw me - so you might want to brace yourself! :)

I had my parents here for about 4 weeks after surgery and it was such a big help. 

As for after effects of surgery - everyone is different.  With translab, she'll be deaf on that side, of course.  And, like others have said, the first couple of days won't count - she'll most likely feel like poop and there isn't much you can do about that.  Headaches are statistically less common with translab; so she may dodge that bullet all together (I didn't have any headaches). 

I brought a bunch of stuff to the hospital, but didn't end up using most of it.  Lip balm was a must,though - the drugs really dry you out.  I also recommend some kind of very loose pants to wear home - if she has the fat graft on her belly, anything that is too tight or binding is going to be really unpleasant.  I used yoga pants with the roll-down waist which was perfect (in fact, I lived in yoga pants for about the first 3 weeks until the belly incision healed.)  I would have liked my own pillow because the hospital pillows were so hard and uncomfortable.  Books and magazines were pretty useless because I just couldn't see them well enough to read.  I really enjoyed having my family there with me at the hospital most of all.

Sounds to me like Pam has got the most important thing of all - a loving husband.

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

grega

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Re: Waiting for Surgery - Supporting my wife
« Reply #11 on: June 04, 2009, 09:49:19 am »
Hey Bryan .... and Pam,

Has anyone mentioned the need for an elevated foam wedge for use at home?  This is a must for most AN patients to try to sleep comfortably.  It might be covered by insurance .... or at least a health care spending account if you have one.

Good wishes and prayers continue to flow your way!

Greg

1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

bsharpintexas

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Re: Waiting for Surgery - Supporting my wife
« Reply #12 on: June 04, 2009, 11:21:17 am »
Thanks for all the replies everyone! Pretty busy today  :P but I will be following up with you guys later!

Jim Scott

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Re: Waiting for Surgery - Supporting my wife
« Reply #13 on: June 04, 2009, 02:00:32 pm »
Hi, Brian - and welcome.  I'm always sorry to learn that another person has been diagnosed with an acoustic neuroma but fortunately, they're almost always benign and operable/treatable.

I condensed your questions and although others were way ahead of me in responding, I thought I'd offer my answers, for whatever they might be worth to you. 

1. What would you suggest to prepare for surgery?
2. What would you suggest to help support my wife prior to surgery? Mainly I am trying to reduce stress and do some fun things with the kids.
3. What are some good things to bring to the hospital for the patient?
4. What are some of the side effects we can expect immediately after surgery? (I realize this is a pretty broad question).
5. My wife's Mom is planning on staying 3 weeks from the date of the surgery? Does that sound reasonable?

1.  There really isn't much your wife can do to prepare for her AN surgery other than to be as physically fit as possible and try to keep a positive attitude.  If she passed all the pre-op tests, then the doctors think she's O.K. and can endure the surgery with no greater risk than the normal risks inherent in any major surgical procedure.

2.  Getting the house as squared away as possible and, as you're doing, having some fun time with the kids is a fine plan.  Try to make some time for you and Pam, alone, too.  Try to help her feel as if you'll have things under control and can cope with the kids and whatever comes up while she recuperates from the surgery.

3.  Most patients don't really need that much in the hospital and many over-pack.  Anything that comforts or amuses her is good.  Once past the initial 3 days or so, she may want a favorite food or beverage (non-alcoholic, of course) which you can usually bring in because its unlikely she'll be on a 'restricted diet'.  Books, magazines, newspapers, hand-held games, whatever helps her.  She'll probably tell you - but be sure to ask, just in case she doesn't. 

4.  This is a broad question.  Extreme fatigue, dizziness, nausea, double vision, headaches and neck pain are the most prevalent post-op complaints.  However, I had only two of these - double vision - which was mild and went away within a few days and fatigue, which also dissipated within a few days.  My AN was close to 5 cm when operated on, so you can see that there is simply no definitive answer to your question.   Just be prepared for the worst and of course, hope and pray for the best.

5. A three week visit by your mother-in-law to help you and Pam with the kids, meals, etc does sound reasonable.  By the end of the third week, Pam will know whether she needs further help.  With no surgical complications, she should be doing well by Week 3.  I was driving and out playing miniature golf my 3rd week of recovery.  Some of the younger, more adventurous post-op patients are running half-marathons and doing other physically demanding things.  Some are not.  I'm active but hardly athletic and although I got back to my normal life (I'm retired but not sedentary) fairly quickly, I had a very good surgical outcome and a strong will to regain normalcy.  As you know from reading these forums, we're all unique individuals and one patient's good (or poor) surgical outcome doesn't really affect another AN surgical patient's outcome.  Too many variables.

Kudos to you Brian for your obvious concern and willingness to do what is necessary for your wife, Pam, as she prepares to undergo AN removal surgery.  I hope my comments are of some use to you and of course, I send my wishes and prayers for a smooth surgery and rapid recovery to your wife.  :)

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.

bsharpintexas

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Re: Waiting for Surgery - Supporting my wife
« Reply #14 on: June 07, 2009, 12:53:52 pm »
Hi everyone! Just thought I would give you an update. First off, thanks for all the great, supportive responses. I have printed out the lists of things to bring to the hospital and talked to Pam about the other comments. Especially the F3D (first 3 days don't count).

We have the flight arranged for Pam's Mom to come in a couple days before the surgery. She is staying about 3 1/2 weeks. At least, that's the plan for now. Pre-Op appointment is scheduled for this Wednesday (6/10/09).

We have been staying pretty busy with the kids trying to do some fun things to keep everyone distracted. We just finished a baseball tournament with our 6 yr old (2nd place American League!) and have gone swimming, to the zoo, and hanging out with our neighbors who are good friends of ours and will be helping out with the kids while Pam is recovering.

I am trying to help get things ready for the hospital stay. I am putting some classical music on Pam's iPod now.

Till next time,
Bryan