Author Topic: Encouragement Needed  (Read 2881 times)

Little Sister

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Encouragement Needed
« on: January 07, 2008, 09:08:02 am »
My husband's surgery was 10 months ago. His speech is still S---------L----------O-------W and not as clear as we would like for it to be. And the balance and eye problems are still here.
This question is not for the the "patient", but more for a family member. Did your family member's personality change since their surgery? My husband's has seemed to do so. He is not "the same person" so to speak. I keep a positive outlook when I am around him and encourage him. However I neeed some encouragement now. I am at a loss on dealing with certain situations. I could go on and on and on about things. But I know I shouldn't. Now it would probably help me , because it would be like talking to someone. My family lives out of state and so it is difficult to talk to them . You really have to live in the same house with someone, day in and day out to really know what's going on. It is impossible to try and explain. Agree?
Thanks for allowing me to rant, because I feel better already.
Have A blessed day.

Joef

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Re: Encouragement Needed
« Reply #1 on: January 07, 2008, 09:53:15 am »
Its hard when progress is measured in years ... I really did not see any improvement until 13 months -- my voice was very slurred (friends that did not know details asked if there was brain damge  :o )  -- but after 2 years now.. it much improved... still not back to normal,  but close now..  I did have a stoke during the op . which I assume was part of my problem.

 I know HOW to do things.. but your reflexes - hand movement - balance - etc.. things that was automatic before - must be re-learned and the only way to learn -- get out and try -- all this re-leaning cases grumpiness and irritably.

Driving for example -- I know how to drive -- but I sometimes feel like I'm 16 again .. when I turn to look a side or something .. the car follows! .. my hands forgot how to drive... my mind did not, but I need to be more carefull -- eating , cell phone, or whatever... I wont do . because I know I cant....
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

lori67

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Re: Encouragement Needed
« Reply #2 on: January 07, 2008, 10:08:41 am »
I think it's hard to go through something like this and not have some sort of change - in your personality, your attitude.. I sometimes think it is actually harder for the family and caregivers than it is for the patient.

It can be hard to adjust to a new "normal" after this surgery and also to adjust emotionally to the differences.  I realize, logically, that I am lucky to have had a good outcome, but sometimes the after effects of the surgery can really seem like a lot to deal with.  The slurred speech, the eye issues, the facial paralysis.  When I am having a bad day, due to fatigue or something, I know it can be hard on my family.  I used to drive my husband crazy because I never sat down - I always had to be doing something.  Now i get tired more easily and have definitely had to take it down a notch.  This gets me frustrated and then I'm sure I'm not very pleasant to be around.

You need to make sure you are taking care of yourself - give yourself a break every so often - it will do both of you a world of good.  Has he been on this forum?  Maybe it would help for him to have someone to talk to who has been through what he has.  It's hard for others to understand sometimes, but chances are, there's someone on here who has been in his shoes.

Feel free to rant whenever you need to.  It does make you feel better to not keep it bottled up inside!
Good luck to both of you!
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.

OMG16

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Re: Encouragement Needed
« Reply #3 on: January 07, 2008, 11:20:44 am »
I know exactly what you are talking about.  I have been going through the same thing with my son.  We are almost 3 years out and it can be exhausting.  Please PM me and tell me all about it.  I will listen to all of the details and concerns and will help you get through this.  I hope to hear from you soon.  16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Jim Scott

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Re: Encouragement Needed
« Reply #4 on: January 12, 2008, 04:34:27 pm »
Hi, Little Sister:

I just discovered your post and wish I had seen it sooner.  I regret that I can't offer a quick and easy solution to your situation but I both sympathize and, more importantly, empathize, as do many others here, I'm sure.  I had a relatively easy recovery from surgery and radiation but during my recuperation my wife found me difficult at times, beyond my exhibiting my usual foibles.  Of course, she didn't share this with me until some time later.  She said I was grumpy and 'touchy'.  I honestly don't recall feeling that way but I accept her characterization of my immediate post-operative temperament.  I also regret it - and I've told her so. 

It is clear that your husband has suffered a major life challenge.  First, the tumor and all the anxity that, alone, generates.  Then the surgery and now, the recovery and return to normalcy that seems to proceed at a glacial pace.  Who wouldn't be unhappy and feeling impotent and frustrated?  I would. 

What's a loving spouse to do?  Well, my wife did the best she could; that is, she remained positive and endured a few outbursts from me that were probably uncalled for and which I regretted and apologized for, explaining that I was frustrated, not at her, really, but at my 'situation'.  She understood and continued to love and give me the emotional support I needed.  It all helped.  19 months post-surgery, I'm fine.  Those days are receding into a distant memory for both of us as our lives go on. 

Now, I fully realize that (a) I had a fairly easy recovery - few post-op complications to deal with, and, (b) every couple will have a different dynamic.   However, I believe that openness and honesty are crucial in any relationship and that this becomes imperative when 'the chips are down' and one partner is affected by a negative situation they cannot fully control while the other partner has to deal with both their own anxiety and the sometimes irrational attitude of the person with the actual physical problem.  The wives of military men wounded in combat are often confronted with a husband that doesn't seem quite the same, anymore.  Combat does that, as does losing a limb or being noticeably weakened for a long period of time, which is, in effect, what happens to a person suffering post-op complications after having an acoustic neuroma tumor removed.  From your post, it sounds as if you and your husband are in this situation. 

Outside counseling may be necessary before irreparable damage is done to your relationship.  If you are religious, your church is an obvious resource.  If that isn't feasible for you, there are many private counseling organizations in every area and some state-subsidized groups and agencies are usually available if finances are an issue.   Of course, venting on this forum to folks who can relate in a very real way to your situation is another (free) option that I hope you'll also consider utilizing as often as you think necessary.  :)

I'm sorry to learn of your difficulties as well as those of your recovering husband and I trust that as he continues to get better, so will your relationship.  To that end, you'll have the prayers of many from this group, of that I can assure you.  I'll be one of them.

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.

OMG16

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Re: Encouragement Needed
« Reply #5 on: January 12, 2008, 04:57:48 pm »
I have found through our own experience that this is very hard on spouses and family members.  Jim did your wife get her own support with this?  It sounds like you have a wonderful wife!  I believe your advice to be very valid and helpful.  16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

Richey

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Re: Encouragement Needed
« Reply #6 on: January 12, 2008, 06:07:40 pm »
I asked my wife to read your post and see if she could shed any light and the one thing that we agreed on strongly is that if you can find a support group in your area that it would be a great benefit for you and your husband to go and listen and share.
  My experience is much different than your husbands and I chose Gamma Knife for treatment. I found a support group in my area and have attended several meetings. One of the things that seems to be very helpful for all is listening to those who have AN related problems and their spouses. I know that it has given me and my wife a far greater understanding of how complex the issues are with AN's and you get support and you can give support to others.

Jim Scott

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Re: Encouragement Needed
« Reply #7 on: January 13, 2008, 03:29:43 pm »


I have found through our own experience that this is very hard on spouses and family members.  Jim did your wife get her own support with this?  It sounds like you have a wonderful wife!  I believe your advice to be very valid and helpful.  16

Thank you.  I appreciate the kind words.   

My wife did not have her own support group during my recovery.  However, it probably helped that she had underwent multiple spinal surgeries over the past five years, some with a fairly lengthy recuperation period, and I was always there for her.... or tried to be.  I should add, in all candor, that my wife and I have been together 37 years.  We share a strong spiritual faith, which we consider paramount.  We've gone through good times and bad and still love each other like crazy.  We may occasionally snap at each other in times of stress, but we both know the love is there and we would do anything for each other.  We've doled out medications, applied healing ointments to each others bodies following surgeries and helped each other through various physical therapies with encouragement and gentle discipline.  I have no compunctions about doing house cleaning or laundry.   Although my cooking skills are practically non-existent, there are a lot of easy-to-make meals around and my wife is a good instructor.  In effect, we're all the support each of us needs. 

We both dislike being incapacitated for any length of time, so we tend to rebound fairly quickly from any kind of illness or surgery.  That being the case, we do not malinger or hold pity parties for ourselves.  We simply fail to see the value in lying in bed or reclining in a chair all day if we're physically able to get up and do something to hasten our own recovery.  Fortunately, we were raised with this mindset.  The desire to 'get back' after any kind of physical problem has disrupted our lives is inherent in each of us, so we hardly need any encouragement to at least try to do whatever is necessary (within reason and good sense) to resume some semblance of normal life following a physical set-back.  This probably wouldn't work for every married couple in a similar situation but it does for us, and I can only offer my own experience with any degree of credibility.   I trust that it is of some help to others because that is my sole reason for offering it and why I'm still a contributor to the forum(s). 

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.

debora

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Re: Encouragement Needed
« Reply #8 on: January 14, 2008, 05:59:40 pm »
Jim,

Like you I do not like to be incompatitated at all and hate to lay around.  I have worked very hard these last 3 years to try to over come the difficulties that this little uninvited guest brought, I do not have the luxury of being unemployed and work until I can't lift my head off the bed.  The week that I posted Pity Party was difficult because my Dad has been in hospice for a year and we get calls telling us to come because he won't make it, that has happened over and over again, he lives 4 hours from me and I can't drive because of vertigo so I don't get to be with him as often as I would like.  I also have a good friend dying and try to see him 3 times a week.  On top of it all my vertigo has hit high gear for the last few months and it scares me.  Sometimes it helps to talk about it, I am not sitting around feeling sorry for myself everyday, I am working hard to get over this and most of the time I am ok.....................................
Deb

lori67

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Re: Encouragement Needed
« Reply #9 on: January 14, 2008, 07:46:24 pm »
Maybe we all need to borrow Jim's wife.  Don't get me wrong, my husband has been great, but if you think your cooking skills are practically non-existent - sheeshhh..  The man can take apart and rebuild a nuclear reactor with one hand tied behind his back - but do you think he can heat up a can of soup without help??
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.

Charlotte Lady

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Re: Encouragement Needed
« Reply #10 on: January 14, 2008, 11:06:08 pm »
I feel your pain, cookingwise.  After surgery, my better half took a week off family care time.  Well we had a lot of subway, Kentucky Fried Chicken, pizza, etc. 
I asked her if I'd changed since the surgery.  Her response..."Nope.  You're still the same BXtch I loved before it".  Ain't that romantic?

Donna
1.5 cm AN removed 9/25/07.

lori67

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Re: Encouragement Needed
« Reply #11 on: January 15, 2008, 09:19:10 am »
Gotta love those cute little pet names!

We actually went to a place where you make 12 meals ahead of time - they provide all the ingredients, you just put them together in a freezer bag or container - take it home, freeze it, and when you're ready to cook it, the instructions are right there in the package for you.  Most of them just require you to defrost in the fridge and stick in the oven.  Not hard.  I still had to read him the instructions (trying to read through giant globs of eye goo while my head was spinning) so he could get it right.  I don't know how much easier I could have made it - unless I hired a chef.  Maybe that's what he was hoping for.

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.

Battyp

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Re: Encouragement Needed
« Reply #12 on: January 19, 2008, 09:06:32 am »
Lori those meals are great! Takes the guess work out of trying to figure out what and how to cook something. I highly recommend them!

robynabc

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Re: Encouragement Needed
« Reply #13 on: March 12, 2008, 11:50:12 pm »
Hi,

I know this is somewhat late.  My son had surgery and the confusion and change in his personality lasted only a few weeks but he definetely was not his self.  We asked the doc several times about this and he said that it was not permanent.  He said they jumbled things up a little but it would get better and it did.  Especially, when he got off the steroids.  I have to admit that was a very rough time.  He gave us this blank stare that was a bit terrifying.  And then later the voice issue was hard because we couldn't hear him at times and then it affected who he was.  He likes to do impressions and could not do that for the time he had problems with his voice. 

The fact that you are going through this on a regular basis must be difficult.  Maybe you would benefit from a support group so you don't feel alone.  I know if that had lasted longer than it did I would have had to have someone to talk to about it.

I feel for you Hon.  It is hard to be a family member too. 

Good luck. 
18 yr Son 4.5+ CM AN  surgery 6-27-07 at CU in Denver.Drs Lillihei and Jenkins. Complete removal on facial nerve with no paralysis at all. Paralized vocal cord that is causing swallowing & voice issues.  SSD. Went to a movie theater 11 days after surgery. Great Doctors!! That is most important.