Author Topic: people just don't understand  (Read 18590 times)

Wwoodian

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Re: people just don't understand
« Reply #15 on: January 04, 2010, 03:29:05 am »
This forum is so great!  Most of you are saying the thoughts that are in my head, but I'm not quite ready to make them real! My family and friends are so ready for me to tell them about how great I'm doing, that I feel so disappointed that I can't live up to that.  Because I talk great, and look okay (everyone loves how you can't even see a scar because of my long hair) that that all must add up to the old me. (Which is what I want too!)  I'm grateful to be able to come on this forum and see so many other "new me's" trying to deal with all of the same emotions.  Thanks for all of the insight and strength you people bring to a horrible time.
Jill
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!

pjb

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Re: people just don't understand
« Reply #16 on: January 05, 2010, 08:31:36 am »
This forum is so great!  Most of you are saying the thoughts that are in my head, but I'm not quite ready to make them real! My family and friends are so ready for me to tell them about how great I'm doing, that I feel so disappointed that I can't live up to that.  Because I talk great, and look okay (everyone loves how you can't even see a scar because of my long hair) that that all must add up to the old me. (Which is what I want too!)  I'm grateful to be able to come on this forum and see so many other "new me's" trying to deal with all of the same emotions.  Thanks for all of the insight and strength you people bring to a horrible time.
Jill

Hi, Wwoodian I tried posting yesterday to your response and lost it somehow ?? Same as you this forum is great I do not feel so left out in the non AN world is the way I have been feeling lately my family and friends just to do understand you look good so you must feel good is the vibes I am getting. Do not ever feel disappointed this is who we are and we have to accept it and not to focus on what others think you have a family of friends here to vent whenever you need to. I keep repeating myself but this forum of people are so compassionate and will never let us feel any different then others do.

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

pjb

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Re: people just don't understand
« Reply #17 on: January 11, 2010, 08:51:04 am »
Cheri, thanks I just feel so good when I can help someone and I want everyone to know I do not know what I would have done if I did not find this site.

Regards,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Wwoodian

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Re: people just don't understand
« Reply #18 on: January 11, 2010, 03:04:17 pm »
Yes Pat! Thanks for the reassurance and support.  I love the fact that a common bond which is considered a negative can have the strength to pull so many together. 

What a battle this is! I had no idea that it would be so difficult.
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!

pjb

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Re: people just don't understand
« Reply #19 on: January 11, 2010, 08:19:05 pm »
Yes Pat! Thanks for the reassurance and support.  I love the fact that a common bond which is considered a negative can have the strength to pull so many together. 

What a battle this is! I had no idea that it would be so difficult.

Just try to be positive I know it is difficult but that is so good that you have no hearing loss or facial paralysis I am not sure about the double vision that sounds horrible but hoping in time that will pass. Have you asked if anyone else has experienced that and if so how long did it take to get better....

Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Wwoodian

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Re: people just don't understand
« Reply #20 on: January 12, 2010, 11:23:11 am »
Hi Pat,
I know that I need to work on staying more positive.  I am grateful for my positive outcomes, I really am!  My double vision and jumpy vision are just extremely uncomfortable and also keep me home because I cannot drive.  I have gone out a few times (yesterday I went to Costco!), but it is pretty nauseating business.  I have heard from a handful of others on here who have had long term double vision.  It sounds like it will take months (one person it took 9 months).  I guess I'm just in a "wait" scenario.  I think it is just more difficult because this wasn't a side effect that I even considered--I have had two Doctors at House say they have never seen it, and that was really scary when I heard that.  Obviously, others have had it, but evidently nobody from House.  I haven't heard from my Doctor since before Christmas even though we have called him a few times trying to find out about Vestibular Therapy.  I guess I'm on my own, which doesn't feel good either.  I know that I'm complaining, but I am scared!  I expected balance problems, hearing loss and had even prepared for facial paralysis.  Just didn't prepare for this!
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!

Nickittynic

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Re: people just don't understand
« Reply #21 on: January 14, 2010, 07:38:42 am »
I guess I'm on my own, which doesn't feel good either.  I know that I'm complaining, but I am scared!  I expected balance problems, hearing loss and had even prepared for facial paralysis.  Just didn't prepare for this!

Feeling like you're on your own, lost somewhere in the healthcare system, is the worst! I feel like I've been fighting with secretaries and various "paper pushers" (disability paperwork people) for months now just to be seen/heard/etc and I'm tired of it! So you're certainly not alone there.
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

marta555

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Re: people just don't understand
« Reply #22 on: January 15, 2010, 04:08:59 pm »
I just joined this forum and feel like I suddenly found a huge group of people who understand me, I feel like crying.  Over and over again I think to myself, "No one really understands".  It has been a little over a year since my surgery (middle fossa) and I feel like I am just getting back on my feet.  I am really tired all of the time, pretty deaf in the right ear, and have pretty poor balance combined with residual vertigo.  I had migraines going into the surgery which are now daily and I have to take daily meds that make me even more tired.  I have chronic head/neck/shoulder pain on the right so anytime I lift anything remotely heavy I am in serious pain.  Has this happened to anyone else?

And, I keep it all inside because to everyone else it is just complaining or I hear that I need to look on the bright side.  Even now I feel guilty for writing about it!  But my life is a struggle now and so different.  I am 35 and a mom of a 3 yo.  I used to work full-time.  SO much has changed I can hardly make sense of it all.

Well, thanks for listening (reading).

Jim Scott

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Re: people just don't understand
« Reply #23 on: January 15, 2010, 05:00:07 pm »
Hello - and welcome, Marta ~

I'm so glad you've discovered the ANA website and the discussion forums.  Although our members aren't doctors and can't offer 'medical'advice, collectively, we have a wealth of practical experience dealing with an acoustic neuroma, from diagnosis to choosing a treatment to surgery and/or radiation and, of course, the recovery process and all of the emotional obstacles that seem to go with it.

We don't think having your life turned upside down and being in pain but not liking it constitutes 'complaining'.  We call it 'venting' and if you need to 'vent', we welcome it, here.  Crying is also allowed.  Although our forums generally deal with the day-to-day aspects of living with an AN diagnosis, choosing a treatment and/or coping with the ramifications of the treatment, be it good or not-so-good, we also recognize in a way others probably cannot, that dealing with an acoustic neuroma has consequences.  Even those of us that enjoyed a splendid outcome after surgery and/or radiation didn't escape totally 'unscathed'.  We understand the upheaval this kind of medical problem brings to people's lives and we offer our wholehearted support as well as whatever advice we may be able to give.  Others may not recognize your struggle but we do and we want to help you through it as much as we can.  Consider us your 'AN family'. 

Your chronic head/neck & shoulder pain is not uncommon in AN patients and neither are the headaches.  Others may have some useful suggestions for you but unfortunately, I do not.  However, I can sympathize with your feelings of isolation and I trust that knowing there are folks 'out there' with the same kinds of problems you have because of the same tumor will be an encouragement to you.  Meanwhile, please stay connected here because we understand and we're eager to help in whatever way we can.

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.

leapyrtwins

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Re: people just don't understand
« Reply #24 on: January 15, 2010, 05:08:48 pm »
Hi Marta and welcome to the Forum  ;D

What part of the country are you from?

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: people just don't understand
« Reply #25 on: January 16, 2010, 12:10:07 pm »
Hi Marta,
So glad you found us.
The AN journey is so complex for some and easy for others.
We are not counseled prior to surgery how our lives may be so different, because the surgeons don't follow us forever. Then we get bombarded (me) with all these post op side effects that will be with us forever, basically.
Every day is a "challenge" for me, but I do get by doing the things I used to do. I just don't have that same "joi de vie" that I had before surgery and that brings me down.(tinnitus is the main curse)
An emotional roller coaster that loved ones get tired of hearing about.
Very complex......I'm doing acupuncture now for face and well being which is helping some, but time consuming and $$$$$.
Sometimes I feel it affects my personal relationships, because I tend to isolate myself from social, loud situations, and don't want to take the energy for conversing!
That's why it is so  important to have the support groups.
Is there a local support group in your area?
Anyway, again welcome, and hope you continue to visit us :)
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

Captain Deb

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Re: people just don't understand
« Reply #26 on: January 25, 2010, 08:49:54 pm »
I just joined this forum and feel like I suddenly found a huge group of people who understand me, I feel like crying.  Over and over again I think to myself, "No one really understands".  It has been a little over a year since my surgery (middle fossa) and I feel like I am just getting back on my feet.  I am really tired all of the time, pretty deaf in the right ear, and have pretty poor balance combined with residual vertigo.  I had migraines going into the surgery which are now daily and I have to take daily meds that make me even more tired.  I have chronic head/neck/shoulder pain on the right so anytime I lift anything remotely heavy I am in serious pain.  Has this happened to anyone else?

And, I keep it all inside because to everyone else it is just complaining or I hear that I need to look on the bright side.  Even now I feel guilty for writing about it!  But my life is a struggle now and so different.  I am 35 and a mom of a 3 yo.  I used to work full-time.  SO much has changed I can hardly make sense of it all.

Well, thanks for listening (reading).

Marta,

There is a lot of good information over in the headache section on cervical headaches, which is what a lot of us have.  I, too had migraines going into surgery and they ramped up to warp speed post-op. There are a lot of options, including seeing a headache specialist--our surgeons don't have enough knowledge on headaches.  You are certainly not alone.

Capt Deb
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW

pjb

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Re: people just don't understand
« Reply #27 on: January 29, 2010, 08:59:09 am »
Hi, I am concerned and just wanted to know how you are doing have you heard from your doctors regarding the vestibular therapy and double vision ??


Best Wishes,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

MamaGina

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Re: people just don't understand
« Reply #28 on: February 09, 2010, 09:59:50 am »
ME TOO!!!  I miss the person I used to be.  For 9 1/2 years I tried to pretend I wasn't different.  Let me just say, it burned me out-BIG TIME!  I have to know my limitations, such as taking myself out of the crowds and other overwhelming situations, getting enough rest, letting things go and letting people help me.  I get depressed when I look at pictures of myself BAN (Before AN, like someone else called it!) I can't look in the mirror-I hate that I can't smile.  I am dizzy and tired all of the time, I can just do very little.  I am not working anymore.  I just can't handle it.  It took too much out of me, and I had to pretend too much, lie about why I couldn't make deadlines and fullfill my obligations, etc.  Soooo, I am out of Denial; I am working on accepting who I am now.  I am just going to go with it.  My husband also had a hard time adjusting to the new me.  I STILL have to remind him sometimes why he doesn't have clean clothes for work or why the house is so messy.  He loves me, but he had to adjust to having a new wife, just as I have to adjust to being a new person.  :)
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!

Tricia (horsekayak)

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Re: people just don't understand
« Reply #29 on: February 09, 2010, 05:49:53 pm »
Posting another reply because this thread really strikes a chord with me.  Have had lots of recurring dizziiness recently...it got much better about a month after my gamma knife treatment which was Dec 1 2009), then has come back.  I know there was/is a chance of stuff like this happening, but it is still discouragiing.

I know EXACTLY how posters in this thread feel...now that it's been almost 3 months since the gamma, everyone thinks that things are fine.  I show very few physical symptoms, just an off balance walk if i turn my head too fast, or stand up too fast.  So....it's all well and good...right????  Wrong, but i'm at a point where i'm not caring too much.  I almost wish i'd had surgery just to have a scar to show people that something major WAS done to me.  People seem to think the gamma knife is no big deal, and that the tumor therefore was not a big deal, and that everythiing is the same.  And it isnt.

I can be grateful that i was able to have the gamma vs the surgery, but some days it is so old--trying to deal with significant others, families and co-workers who just dont understand why I dont want to eat in loud restaurants, get tired quicker, have trouble doing some of the physical work i could do "B. A. N." (before acoustic neuroma).  This is just one of those yucky days...hubby  I just want to say chuck it all. 

My balance issues are really bothering me...it's actually a dizziness/balance thing.  Have a doc followup next week to see why it keeps cycliing between not bad at all and then gets bad enough that i cant drive for  day or two.

oh well..believe me, even though you cant see the "scar" from gamma knife...it IS there
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington