Author Topic: "It Could Be Worse"  (Read 18822 times)

Patti UT

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Re: "It Could Be Worse"
« Reply #30 on: October 17, 2006, 02:59:19 pm »
I have to agree with Tony.  There seems to be some anger no doubt brought on by being hurt from things people have said. The interesting thing  here is, I am hearing (reading) that many of you want the recognition of having gone through (and still dealing with) such a serious ordeal. But at the same time, if everyone was tip toeing around you, treating you with kit gloves like there was something wrong with you, I don't think you would care for that either.

Overall, I think when people have made deep scars by how they treated you, or what they said, like in Pauls case, they need to be confronted,  in a nice way, to let them know it hurt you, so that you can forgive them. Otherwise these things will continue to fester and make you even more sick. Getting even si not going to make the AN problem go away.  I'm sure you all are familiar with phycosymatic illnesses.

 Right before my surgery a freind gave me a book to read called, "You can heal your life" by Louise Hay  A pretty interesting book about how your thoughts create many of the physical problems we have.
Know what it said about tumors???  "Nursing old hurts and shocks, building remorse"  interesting?hhhmmmmmm?????????
for tinnitus it says "refusal to listen, not hearing your inner voice, stuborness"

Of course I don't take any book I read ver batim, but it definetely gives one something to think about   

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

TT

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Re: "It Could Be Worse"
« Reply #31 on: October 17, 2006, 04:05:30 pm »
Yes it sucks very hard and still have trouble comphrehending what actually happeded. All of my family and friends have been very sympathetic and caring, but I'm still angry. From what I read, I was very fortunate. It's been 7 weeks since surgery and other than being DEAF in the AN ear and a loud contant ringing, I'm contantly getting better. I have daily bouts with the balance and dizziness problems, but I see it improving. I returned to my office job after 4 weeks. At first it was tough, but now I'm doing pretty good.

 I have lost two of my more favorite pastimes; bowling and playing the sax. Bowling is self explanitory, but I haven't played my sax since I was diagnosed. Nothing is the same any longer. What I do hear is distorted so why throw salt into the wound? I've shared this personal issue with a few people and they say, "Just start playing again; you'll be fine". Yea right. Maybe some day, but I have some issues to work out on my own.
2 cm AN - right side
Diagnosed 6/22/06
Retro. procedure performed on 8/24/06 / SSD
Dr. Peter Smith & Dr. Robt. Backer
St. Johns Hospital - St. Louis, Missouri

Crazycat

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Re: "It Could Be Worse"
« Reply #32 on: October 17, 2006, 04:18:59 pm »
I hear ya (er....read ya) TT

  I'm a professional musician. Not only was my left ear taken from me, but the ability to play - left hand impairment -  like I used to has been hampered. It's slowly coming back the more I do it. I'm working three nights a week right now and it's not easy! Don't let go of the sax. It will come back to you the more you practice.

   Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Patti UT

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Re: "It Could Be Worse"
« Reply #33 on: October 17, 2006, 04:46:03 pm »
I live in a beautiful ski resort town and skiing was a passion. The mere thought of skiing scares me with the vertigo.balance and lack of hearing issues. But then I recall seeing blind people up there skiing, so I guess at some point maybe I will ski again.

Patti UT
2cm Rt side  middle fossa  at University of Utah 9/29/04.
rt side deafness, dry eye, no taste, balance & congintive issues, headaches galore
7/9/09 diganosed with recurrent AN. Translab Jan 13 2010  Happy New Year

Crazycat

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Re: "It Could Be Worse"
« Reply #34 on: October 17, 2006, 04:56:41 pm »
Sure you can. Just start out real slow. You'll get it back. Don't expect things too happen really fast though.

           Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

Pembo

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Re: "It Could Be Worse"
« Reply #35 on: October 17, 2006, 06:50:48 pm »
Tony, I was angry for a long time. Now 2 years post op I have accepted that people say things because they are uncomfortable and are glad that it's me with the problem not them. If anything I hope I've educated people on what NOT to say. This is the only place where we can "talk" about these kinds of things and actually have people understand.

And to the person who asked what should you say when you hear really bad news from someone, just say I'm sorry and do you need to talk? (if you will really listen).
Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

Rc Moser

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Re: "It Could Be Worse"
« Reply #36 on: October 17, 2006, 07:59:52 pm »
Crazykat I find that true friends are hard to come by. Most are backstabing weisels seeing what the can get for you or what you can do for them, but have no time for you. A true freind wouldn't put you through hell, ask for anything, expect anything, and is there when you need them. I find when it boils down to it you have few if any true friends. Kind of like a divorce. Once you get burned, you have a hard time getting close to the fire again. I find that some famly member can be worse :o
9/17/03, 4.5CM, Translab, OU Medical Center, Dr. (the ear man) Saunders and Dr. B. (the BrainMAN) Wilson  along with about 4 other Doctors that keep me going for 18 hours.

Crazycat

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Re: "It Could Be Worse"
« Reply #37 on: October 17, 2006, 10:57:18 pm »
Yes RC. That is what struck me the most: the cold-blooded viciousness from people that I thought were "friends". You wouldn't really expect that kind of treatment from acquaintances or even total strangers off the street. That just blew me away. But that's alright because I'm mentally stronger than they are and I can put up with and deal with a lot of grief. More "grist for the mill" or "sauce for the goose".
   The medical ordeal I went through probably would have killed them if they had to endure it, given their age and physical condition. Then, of course, there's the aftermath of having to live with the stigma and hindrances of having had an Acoustic Neuroma; not to mention the concern of  the damned thing growing back!
 
 On a different note: There's a woman I know that I met after my surgery a year a go. She worked in customer support for a hi-tech company. She had had an A.N. resection in 1977 and had so far, been doing just fine. We met for lunch in a conference room at her company. She was apprising me of what to expect during my recovery period. It was interesting to note that she had had her surgery long before there were even MRIs'!
Just recently she contacted us, reporting that she has a 2cm regrowth! After all that time. Can you imagine? That's the longest period of time I've heard of yet! I turned her on to this forum. Not sure if she's posted anything yet. I'll be contacting her again. I think her surgery is scheduled for sometime in November at Mass General, my old alma mater.

  Only goes to show that we are in no way out of the woods yet!

   Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.