Author Topic: A place to vent  (Read 63931 times)

Pembo

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Re: A place to vent
« Reply #15 on: May 27, 2007, 08:40:21 am »
I'll play, I'm 3 yrs post op on June 3rd and just had my MRI this past week. I've been venting for days, sometimes you just need to feel sorry for yourself, because no one understands.

tinnitus - augh
ssd, can't locate sound---augh
the wide open eye - augh
the crooked smile and continual smirk
not being able to squint, even when it's not that sunny - augh
clip-on sun glasses - grr
the word mix-ups - grr
the endless amounts of chapstick and god forbid I forget to put it in my pocket, I turn into an addict looking for my next fix.....

Yep, it could be worse but this is my reality and it is not always fun and YES I have my days when I long for the normalness that was life before the AN.

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

Sam Rush

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Re: A place to vent
« Reply #16 on: May 27, 2007, 11:04:29 am »
This venting thread has made me seriously depressed.  Thanks all !!!
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Windsong

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Re: A place to vent
« Reply #17 on: May 27, 2007, 11:35:58 am »
Come'on Sam.... you're made of stronger stuff! ;D

What's that phrase? It could have been worse.... just think if you had had an An appear in the 1960's?

Life is good, life is precious, have fun when you can.

In the meantime, for this second, I will vent about hearing loss.

Having 0 hearing in my An ear and loss in the second one, meant that yesterday (as usual now) I missed half the conversation directed at me from someone eight feet away because that person was on my An side. And although I knew something was being said I stayed put because I am tired of constantly walking over to a person speaking to me in those situations.  And.... I have noticed that most don't bother to do the walking over to me because frankly they don't get it....

so i'm anxious to get this hearing aid because I wanna hear.
 ;D

be cheery... life is good (for the most part) :D

W.

Boppie

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Re: A place to vent
« Reply #18 on: May 27, 2007, 11:53:08 am »
Yes, lets be cheery!  I agree!  Let's get a thread going about finding the positives, books and poetry references for recovery. :)

Jill Marie

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Re: A place to vent
« Reply #19 on: May 27, 2007, 07:49:46 pm »
I agree that being cheery, looking on the bright side, laughing at yourself, laughing with others, knowing that it could be worse, enjoying all the good things in life (family, friends, fellow tumorites, Spring weather & more) is very important.  However, I first posted on this thread because it had been a very long week at work & I was really tired and a bit frustrated.  I felt this was the ONE place I could let it all out, so I did.  I felt much better after that and have had a great weekend since then.  I do believe that I will leave the bright side of life for a thread on that subject.  Here is where I can come to vent when I need to so I will feel better.  I encourage others to do the same!  JIll
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

ppearl214

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Re: A place to vent
« Reply #20 on: May 27, 2007, 09:23:10 pm »
Hi all,

Just fyi reminder.... this discussion forum was created by the ANA as "support" for each other.  I do believe we all need a place to "vent" and release our frustrations during this AN journey, but we are also here to "support" each other.  As we all have our good days and not-so-good days, this thread is being watched carefully to make sure this doesn't turn out to be a real downer as many new folks log onto this site daily to seek support.

As we all need to release our frustrations, let's please keep in mind those newbies on this site that reach out for information/knowledge, as well as share emotions... ok?  This is a much needed thread for many but there are many that are trying to also keep a positive light during this time.... so, please remember that.

Thanks.
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

BB

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Re: A place to vent
« Reply #21 on: May 27, 2007, 10:11:05 pm »
AS MUCH AS WE DO TRY TO BE HELPFUL AND POSITIVE, ISN'T THERE A NEED TO TELL IT HOW IT IS?  WE ALL HAVE GOOD DAYS AND REALLY BAD DAYS.  ISN'T HONESTY THE BEST POLICY.  WE ARE SO HAPPY WE HAVE MADE IT THROUGH THE AN SURGERY AND ALOT OF THE PROBLEMS WE ENCOUNTER, BUT LIFE IS DIFFERENT FOR A LOT OF US.  EVEN OUR DOCTOR'S ARE NOT THE BEST AT HELPING US DEAL WITH OUR PROBLEMS AFTER SURGERY, BECAUSE, THEY DO NOT KNOW HOW OUR OUTCOME WILL BE, OR REFUSE TO ADMIT IT EXIST'S, LIKE THEY DO NOT WANT TO BE RESPONSIBLE FOR ANYTHING.  SORRY, BUT I GUESS I ALSO NEEDED TO VENT.  MY HUSBAND TELLS ME IT'S OK TO VENT, AND THEN REMINDS ME HOW FAR I HAVE COME SINCE SURGERY. I KNOW WE NEED TO BE POSITIVE, AND HELPFUL TO ALL THE NEW AN PEOPLE.  IT IS A SCARY TIME FOR THEM, WE SHOULD BE SUPPORTIVE, BUT AFTER SURGERY THEY DO NEED TO KNOW WHAT LIFE CAN BE LIKE.  THANKS FOR THE VENTING TIME.

TP

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Re: A place to vent
« Reply #22 on: May 27, 2007, 10:19:16 pm »
As someone who tries very hard to be positive and encouraging to others, I find I have not been as honest about my feelings because I know I cannot change my situation physically at all, I pretend a lot about how I truly feel. As I have read thru this thread I can relate a great deal to the frustrations everyone is experiencing.

Each Sunday at church someone asks me how I am doing. They share with me that I look like I am doing great and as a good doobie, I say I am - with a smile. I don't really want to unload on someone about my situation. However, I have a friend at church who has bells palsy. Even though our situations are different we both experience facial paralysis at some degree and all those annoying side effects. We both share between the "two of us" our frustrations because we can relate with each other. We agreed that we are thankful this is all we have - but it doesn't change the fact that people stare, we feel different and folks who haven't experienced this - can't really relate (family, friends and co-workers to name a few).

For you newbies or folks who are considering surgery, not everyone turns out the same. We all have different backgrounds, health history, age, experience in Dr's, recovery times, etc. Going under the knife is serious. I would bet those of us who didn't have a lot of time to think about surgery but needed surgery quickly we were mainly concentrating on removing the brain tumor and not the side effects. I know I never thought about the potential side effects. I just wanted my head aches to end. After the tumor was removed, thank God - they ended. I am sure the folks who are wait and watch mode can be very frustrating and somewhat scary because they have more information than you can imagine. Knowledge is awesome to have but can sometimes can be overwhelming!

Bottom line for me, I am frustrated with all my side effects, but I truly have faith that I will get better some day. I just pray that day is real soon  ;)
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

Jill Marie

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Re: A place to vent
« Reply #23 on: May 27, 2007, 11:14:14 pm »
AS MUCH AS WE DO TRY TO BE HELPFUL AND POSITIVE, ISN'T THERE A NEED TO TELL IT HOW IT IS?  WE ALL HAVE GOOD DAYS AND REALLY BAD DAYS.  ISN'T HONESTY THE BEST POLICY.  WE ARE SO HAPPY WE HAVE MADE IT THROUGH THE AN SURGERY AND ALOT OF THE PROBLEMS WE ENCOUNTER, BUT LIFE IS DIFFERENT FOR A LOT OF US.  EVEN OUR DOCTOR'S ARE NOT THE BEST AT HELPING US DEAL WITH OUR PROBLEMS AFTER SURGERY, BECAUSE, THEY DO NOT KNOW HOW OUR OUTCOME WILL BE, OR REFUSE TO ADMIT IT EXIST'S, LIKE THEY DO NOT WANT TO BE RESPONSIBLE FOR ANYTHING.  SORRY, BUT I GUESS I ALSO NEEDED TO VENT.  MY HUSBAND TELLS ME IT'S OK TO VENT, AND THEN REMINDS ME HOW FAR I HAVE COME SINCE SURGERY. I KNOW WE NEED TO BE POSITIVE, AND HELPFUL TO ALL THE NEW AN PEOPLE.  IT IS A SCARY TIME FOR THEM, WE SHOULD BE SUPPORTIVE, BUT AFTER SURGERY THEY DO NEED TO KNOW WHAT LIFE CAN BE LIKE.  THANKS FOR THE VENTING TIME.

Thanks BB for saying exactly what I was feeling.  I think it's good for the Newbies to know it's ok to vent!
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Catflower

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Re: A place to vent
« Reply #24 on: May 28, 2007, 06:14:48 am »
I think having a place to vent is great.  We all need to vent to others who share our feelings, both physical and emotional.  I also agree that is a good idea to let the newly diagnosed know what life can be like following surgery.

If I had known before surgery what I know now I would have definitely tried the Gamma Knife first.  My surgeon told me if I worked outside the home to plan on being off for 3 weeks.  Here I am 6 weeks post and there is no way I could go back to work.  Of course, I have had several complications which required two subsequent hospitalizations and a second surgery due to infection in the incision and am on IV antibiotics until the end of June.  Nevertheless, I wish I had known more.

I try to be positive each day, but some days it just isn't possible and it's great to have others to "talk" on those days.


Ellenmn

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Re: A place to vent
« Reply #25 on: May 28, 2007, 06:21:54 am »
Well I'm glad this thread is here. I also try to be positive every day. If you've read my other thread you know that I have had radiation but will be having surgery the end of June. I am so tired of the facial spasms, headaches, sharp pains in the right side of my head, and now it seams as if my tear duct gets plugged on that side. I feel like some ones pushing my eye ball out from the inside, then when I rub my eye a couple of times I have so many tears it runs down my face and sometimes it relieves the pressure and sometimes it doesn't. I can also relate to the hearing issue on the AN side.
All that being said I am also very scared of all the things that happen after surgery.
The facial problems, the balance problems, etc...
I also read on some threads on hot flashes increasing if that happens I will be one walking heater. 3 months ago I started getting the Hot flashes again and they are back with a vengeance. I have one to two an hour and I am awaken at least 3 times a night with night sweats.

OK EVERYONE HAVE A GREAT DAY.

GM

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Re: A place to vent
« Reply #26 on: May 28, 2007, 06:30:06 am »
I've read all of the posts so far and I'm happy there are others that feel the need to "vent" as well.  I absolutely believe that a positive attitude, support from family, church, friends and loved ones…and just plain ‘ol  "strong will" will get all of us through this.

But there are just days...when it all piles up and I need to let it out.  Sometimes it's while driving to work, or typing in my (password protected) journal.  But it helps to vent to people who can understand and may want to see that they are not alone in their frustrations.  

This is just an area to vent...no supportive posts required...just vent.  Spouse doesn't understand?  Coworkers don't get it? Kids driving you crazy today??   Here is your place to vent.  

For me there are days (yes they are few, but they do exist) when I need to not be "the rock" that people see.  Most people know I have a AN...but do not know that I deal with the ringing in my ear, or how I DREAD the annual MRI's, or worry that one day I may have to have this cut out of my head and not be able to return to work.

Most days I handle it well...but on occasion, I just need to vent...I'm sure others feel the same way.  Maybe newbie’s need to see we're human too.   ;)

Gary  
« Last Edit: May 28, 2007, 06:32:17 am by GM »
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

amylynn

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Re: A place to vent
« Reply #27 on: May 28, 2007, 07:07:04 am »
I third, fourth and fifth that venting statement.  I am so frickin sick of putting gooey ointment in my eye day and night  I look much different, since the paralysis on the AN side, which has greatly improved, still lots more forehead wrinkles. (poor me!) Conversations with more than one person are extremely frustrating;  often the things I want to say, the words wont come-  that may be good since I tend to be "outspoken";  I cant exercise at even close to the intensity that I feel I need to work off my anxiety (I get weird pressure in my head when I try to jog- which was my pre-AN removal "happy pill") now I am taking prozac and have recently got into the wine a little heavy.   I feel like I have no right to complain because lots of people have it much worse and more difficult than I do.  I have weaknesses I need to work on.  In some ways the AN situation has made me stronger but there are days I feel like an emotionally pathetic wimp. On a positive note I am still back to work full time and have done pretty well so far, getting stronger- my job depends on it.  Driving the fire truck is no problem. I do know that I am blessed to be here and things will get better, just have learn to adapt to the changes and keep moving forward, I am determined.   I have set a short term goal to run in Race for theCure in August.  Thanks for the opportunity to vent!
I wish all you out there a Happy Memorial Day.  God Bless!
Amylynn



« Last Edit: May 28, 2007, 07:45:34 am by amylynn »
amylynn 
3.0cm AN left
sx 10/26/06
House-Friedman/Hitselberger/translab
35
MO

Lainie181818

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Re: A place to vent
« Reply #28 on: May 29, 2007, 12:18:42 am »
I think it is a very positive thing to be able to Vent. I also think that when you can bring some humor into it, it is a sign that you  are starting to get over it. I wrote one of the earlier messages, and felt great after sending it. I also feel a kinship with all of you who also vented. Apart from this website, it is not easy to find someone who has "staggered in my moccasins" and I do not feel so alone. I also think that "newbies need to know what MIGHT HAPPEN after treatment. If i had of known before surgery I would have absolutely definitely looked at other alternatives before making my final decision. The outcome may have been the same but I would have been better prepared and educated.
Happy Venting
Lainie.

ppearl214

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Re: A place to vent
« Reply #29 on: May 29, 2007, 05:49:08 am »
Question... in follow up to comments made here.... how many of you are microsurgical vs. radiotreatment?  I ask this as it seems that many of you that are venting seem to have had microsurgery (whether by choice or not) vs. radio or is it those that had radiotreatment are not posting on this thread?  I agree with Lainie that newbies need to know what might happen and please remember there are other threads here in many of the forums (esp. the "Post-Treatment" forum) where many share their post-treatment outcomes, regardless if good or not......

Just curious of the ratio of treatment for those that are venting... nothing more....

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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