Author Topic: New member  (Read 4749 times)

Lainie181818

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New member
« on: March 18, 2007, 02:14:05 pm »
HI my name is Lainie I am new. I had a 1.7cm AN removed last April 2006 at the house clinic mid fossa. I have lost hearing in left ear but have a Baha. vertigo and headaches are awful and I am just starting my second round of vestivular therapy. At the same time I was diagnosed my husband who is a pilot for a major airline, took a 50% paycut and we had to sell our home. We moved 2 weeks after the surgery [craziest thing I have ever done in my life] and my recovery has been long and hell. I have had 2 bad crashes with depression, I can't tell if I am more upset about losing my home, the surgery, or my old life. I guess it feels like all I have had is loses. Recently I started to get very depressed again and my husband has had enough and wants to leave me. I am taking anti depressents but just cannot get out of this feeing of hopelessness. Is there anybody who lives in the Southern California area who had AN surgery. Also i find that my facial paralysis is much worse when I am upset. Has anybody tried acupuncture for facial stuff. I feel a little better now that I have written all of this down. But I seem to have lost all of my selt confidence and Joy for life. I used to be very outgoing and vivacious. I need help adjusting to the new me.
Help.

Desilu

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Re: New member
« Reply #1 on: March 18, 2007, 02:21:12 pm »
Hi Lainie,

Hang in there and take one day at a time. We are here for you! We will help you get through all of this somehow. There's lots of caring people on this website willing to help. If you need to talk, send me a personal email. Come on gang, we need to cheer Lainie up!   Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

flier58

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Re: New member
« Reply #2 on: March 18, 2007, 02:53:01 pm »
Hi Lainie,
You and your husband have gone thru a very difficult time.  But as you can see you have managed to go thru some of the obstacles and you keep on going.  You are probably stronger than you give yourself credit for.  I just reread poem written by nancyann in December and reposted today with her commenting how far she had moved from that day (the name of the poem is "just give me a minute...").  Remember we are here for you and even for your husband.  There is a great thread- cannot remember the title (Phyl - help!!!!) - that helps family members understand a little better our predicament - maybe he can look at it and you certainly should. 
But whenever you feel like cry, vent, complain or laugh (we do that too) feel free to hop on this site.
Flier58

tony

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Re: New member
« Reply #3 on: March 18, 2007, 03:11:27 pm »
I saw your note and do very much understand your plight
Understand this - for all the actually damage you may have taken
the mental damage maybe the hardest thing to cope with
When you have a moment search out (search function)
"post op depression" - it is very real and quite hard to live with,
 both for survivors, and for husbands (and wives)
Maybe time to consider some support here
You can, and will, get 99% of your life back
It will need a bit of time and effort - it is a long journey
Today is your first step - well done
Best Regards
Tony

nancyann

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« Reply #4 on: March 18, 2007, 03:29:36 pm »
Oh my sweet Lainie, how much you have dealt with & are still dealing with.....
My heart truly goes out to you.  I understand the pain of post op complications;
the deep depression you're having.
Please know you are on a journey, there ARE ups & downs, but don't ever give up hope,  please.....
We don't know what's around the bend...   there ARE silver linings around the clouds, right now it's hard for you to see.
There are reasons for this time in your life.  Keep a peaceful heart my friend,  take care of yourself.

Well, that said,  I did acupuncture for about 3 months,  don't know if it helped, but when I had my EMG
in Jan., I had 10-15% nerve generation, still no movement yet, don't know if I would have had it if I didn't have the acupuncture...
If you have facial paralyisis as I do, you should be having routine facial EMGs, every few months; ask your surgeon about it.
My prayers & thoughts are with you, believe that, as are all of us here.
Just DON'T GIVE UP !!!!!!    With warmest regards,  Nancy
« Last Edit: March 18, 2007, 03:33:40 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Jim Scott

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Re: New member
« Reply #5 on: March 18, 2007, 03:37:20 pm »
Lainie:

I'm located on the opposite coast (southern New England) so I don't fit the profile of a west coast AN patient.  However, along with many other members of this site and forum, I can offer you my support, for whatever that is worth.

You've certainly been through a lot and definitely suffered some major losses.  No argument there.  Your depression is not all that unusual following major surgery, a difficult recovery and financial reverses that forced you and your husband to sell your home and move.  Moving is usually considered a major life change that can put enormous stress on your psyche - and a marriage.  Obviously, it has.  When you add in the 'forced' house sale that required the move and your frustrating post-op complications, it seems quite daunting, at the least, so your melancholy from a profound sense of loss is totally understandable.  As you mentioned that you are taking anti-depressants, I'll assume you're under a doctor's care.  As a layman, I won't presume to offer any medical advice, except that the doctor prescribing these anti-depressants should know that they apparently are not effective in your case. 

I won't be inane and tell you to 'cheer up' or any such nonsense but it probably wouldn't do you any harm to consider what you do have instead of concentrating on what you've lost.  I recently learned that an acquaintance who I hadn't seen in some time was stricken with ALS, amyotrophic lateral sclerosis, better known to most of us as 'Lou Gehrig's disease'.  He cannot move, talk or swallow and will probably be dead in a few years.  He is 47 years old.  We had a benign, treatable brain tumor.  For you and others, the surgery left you with facial paralysis, vertigo and headaches.  That stinks - but in time and with treatment, all of those things may go away.  My friend's ALS won't go away - it will kill him.  People suffer strokes every day.  Strokes that leave them totally dependent in many cases - and not all stroke victims are old men, either.  Cancer patients - men and women, alike, often don't survive despite months of sometimes painful treatments that sap their strength and render them impotent, bald and bedridden.  My brother-in-law died from brain cancer last year and it wasn't pretty.  My sister, at 58, is now a a widow who had to watch her husband slowly lose the ability to even communicate as the cancer ravaged his brain - until it finally killed him. 

I could go on but I'm sure you get the point.  It could be a lot worse.  Some AN patients lose longstanding and rewarding careers due to their AN and post-op complications.  We all have our burdens to carry associated with having this relatively rare tumor.  Of course, none of that diminishes your pain and your personal losses, I know.  I certainly don't mean to do that.  Not in the least.  I'm simply attempting to offer you some perspective, nothing more or less.  You've really lost a lot and an apparently unsympathetic spouse likely doesn't make it any easier.  I suspect that with the 50% pay cut you mentioned and related job insecurity as well as the house sale, moving and anxiety over your AN, your husband very likely has some depression issues of his own.  I can tell you that most men tend to keep that kind of stress 'inside'.  He probably could use some support too, but, in your condition, you cannot offer him much right now.  Unfortunately, that leaves you both 'on your own' in a highly stressful situation and that isn't the best way to deal with major life changes.  I can only suggest suggest marriage counseling and the thought that I truly hope you guys can work this out together.

Lainie, I'm as sorry as I can be to know a fellow AN patient is suffering so.  Please know that we're all here to support you.  I'm certain some California residents will be dropping in to this thread and will gladly offer you information regarding acupuncture to treat your facial paralysis.  Personally, I wish you the very best and will pray that your depression lifts -  soon - and that you'll be able to see the positive things happening in your life, small as they may be.  Remember: time heals.

Jim



« Last Edit: March 19, 2007, 02:22:09 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.

Obita

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Re: New member
« Reply #6 on: March 18, 2007, 03:43:40 pm »
Hello Lainie181818:

I am so glad you came on. 

I will try to find the thread flier58 is referring to.  It was a good one.  Post op depression is very common and so is the problem with loved ones just not getting it.

But, thats why we are here.  We get it!! 

Come on often Lainie, we are here for you.  Kathy



Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Obita

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Re: New member
« Reply #7 on: March 18, 2007, 03:51:19 pm »
Me again - I found the thread under Post Treatment Comments - Spousal Help - started by farah1978. 
Kathy - Age 54
2.5 cm translab May '04
University of Minnesota - Minneapolis
Dr. Sam Levine - Dr. Stephen Haines

Omaschwannoma

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Re: New member
« Reply #8 on: March 18, 2007, 05:35:02 pm »
Hi Lainie,

I am a certified yoga instructor 2 years post op for AN surgery and doing fine, not 100% mind you, overall fine though.  I wholeheartedly recommend starting a beginners or restorative yoga class if you have never tried yoga.  I found getting back into my practice was slow (weak from surgery and loss of muscle mass), gentle (I had daily headaches), and relaxing (increased stress from imbalance and surgery in general).  My headaches lasted daily for 6 months, then tapered off to the point now of maybe twice a month.  I use ibuprofen.  The yoga has helped with my balance, as many of the exercises I had with vestibular therapy were similar.  I know just physical exercise decreases the intensity of depression and stress, I hope you find the same.  I know being able to "focus" on something other than what happened to me, how much pain I can feel, the "now new" me created by the AN benefited my state of mind.  

Physically moving your home after such trauma as this surgery I am sure has impacted your mental state and you have not been able to relax for one moment.  I really encourage you to find a support group in your area (if this is possible or this site), begin some kind of exercise program, and take "baby" steps in less time spent thinking about what you've been and are going through.  This may sound difficult as the "symptoms" are there like white on rice, but the more "minutes" you can create being thought less (not thinking about what you are going through) allows the mind to heal and remember what it's like to be less stressed.  A practice of 5 minutes sitting with your eyes closed and breathing softly with no thought to you or the surgery helps enormously.  I like so many are here for you, to help you with any "*****" you have.
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

Dealy

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Re: New member
« Reply #9 on: March 18, 2007, 06:10:20 pm »
Lainie: I live in the Midwest but I can relate to your story. I am a very outgoing person-not shy by no means. Back in 1988 I kept on hearing a ring in my left ear-my wife would say jokeingly-well answer it. I had a very stressful job so I chalked it up to stress. The ringing got so bad that I finally had an MRI. Found a 1.5CM AN in my left ear heading toward the brain stem. MY wife and I were devestated. I had just lost my job and insurance. We scrambled to get insurance fearing they would deny me and say pre-existing condition-they did not. Anyway we ended up losing our house-and too top it off my wife's father died of a massive heartattack. I did not even have surgery yet and all this happened. Well anyway I thought I could take no more and became depressed. Surgery followed in 3 months leaving me deaf in my left ear. Now Im deaf-what else can happen too me. I lost all my confidence. The thing that got me through was endurance and patience. Within 2 years I was back too my old self-slowly that confidence was building. It takes time though and understanding from all involved in your life.Your husband most like does not realize it but he is not helping in your recovery. Here is the kicker now-I am an NF2 because they found another tumor in my right ear 2 years ago. I had it radiated last summer but my hearing is worse- and now I face going totally deaf. Please Please seek some professional counseling before you crash again. These things take time and patience too recover. I hope and pray your husband will come around too understand and assist you. This board is my sounding room-because these people understand what you and I are going through. I do pray that things get better for you. Keep on reading on this forum where people do recover in time. That is the key though_TIme. I wish you well and hope you seek some form of support-you need it. With Prayers-Ron

Featofclay

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Re: New member
« Reply #10 on: March 18, 2007, 07:34:46 pm »
Hi Lainie,
My heart goes out to you as I read your post.  You have certainly had more than your share of problems and I can understand why you are depressed.  You might check with your doctor about changing your antidepressant.  After you have been on one for awhile, it doesn't seem to work as well as it did at first.  My daughter has migraine headaches daily and her doctor has changed her medication several times.

It does help to be able to "vent" and hopefully your posting helped you.  There are many wonderful people on this site that can help you.  We all have many of the same problems and sometimes it helps to know that we are not alone.  Time does heal many things.
Jean 



Diagnosed 12/19/06; 1.7 cm x .8 cm right side
Retrosigmoid 2/16/07 @ House Ear Institute
Dr. Rick Friedman, Dr. Marc Schwartz & Dr. Michael Stefan
Excellent results

goinbatty

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Re: New member
« Reply #11 on: March 18, 2007, 07:48:07 pm »
You have gone through many of life's stressors in a very short period of time.  My heart goes to you.  I hope your situation improves.  I'm new to this forum, but I quickly realized how supportive everyone is.  So if you're having a rough day or a good day, please let us know.  
Over the years, I've run across inspirational quotes some of which I keep posted on a peg board at my desk.  Some I received direct email from beliefnet.com, which is a great site.  I started collecting quotes when my mother was ill and just reading them helped me.  

I don't think of all the misery but of the beauty that still remains  - Anne Frank

Anxiety does not empty tomorrow of its sorrow but only empties today of its strength - Charles Spurgeon

When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has opened for us - Helen Keller
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Palace

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Re: New member
« Reply #12 on: March 18, 2007, 08:45:29 pm »
Lainie:


I'm a So. Ca. gal. so, I can probably relate to you in some ways further than people that don't experience "city life."  To me, it would be even harder if I were in a big city to go through what you are doing right now.  I'm in No. Ca. now so, you can contact me personally if you like.  I have spoken to a few people on the phone.  These are very caring people on the list.  Talking to the right people can help.  True, we can only take so much and perhaps it gets to the time of professional help (mentally) and then the physical part....say, some of us take pills for sleeping. 

There is hope but, things look worse at night and when they are stacked high, the scale of things mount up and look more hopeless. 

Talking this out is best for you and we are all here to help.  You will get there.  You need to be around caring people now.  You have a huge adjustment.  Again, feel free to contact me personally.  I have been through 21 surgeries and have had a "load" of *serious life changes* but, I made it through all of them so far.  You will, also.

I will mention that I'm not typing personally much now as, I'm back on the AN forum from time-to-time.  I was off because, I had another surgery at the end of January.  I made special contact with someone on this forum.  His name is, "Lorenzo" and I hold him in "high regard."  He has helped me and others with just the right words.  I'm not writing people personally right now as, I need to start getting my own life back in order.  I will make the exception in your case as, you need that right now.

I haven't been online today.  Today is the first really good day I had in 9 months.  (and I got the usual migraine, I've been fighting on a daily basis)  I got the migraine in the mid afternoon today.  They usually come in the middle of the night.

My *best* to Lorenzo and others that kept in contact with me personally since my journey with my AN........



Palace
« Last Edit: March 19, 2007, 04:45:56 am by Palace »
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Pembo

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Re: New member
« Reply #13 on: March 19, 2007, 10:57:59 am »
Lainie, you are not alone! We are all here for you. Please vent away. Have you talked to a professional about all your "losses"? We all have to go through the stages of grief after this surgery but you have so much more to deal with as well.  Keep posting here and feel free to pm me if you'd like to talk more.

Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006