Author Topic: new here...so frustrated i want to scream!!!  (Read 12131 times)

Kaybo

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Re: new here...so frustrated i want to scream!!!
« Reply #30 on: September 11, 2008, 06:21:15 pm »
"Quincy" or "Q-bert"


K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

scarriegirl

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Re: new here...so frustrated i want to scream!!!
« Reply #31 on: September 11, 2008, 06:30:01 pm »
geez!! i'm gonna have to start writing these down!
"when you reach the end of the rainbow there's always another color!"
finally diagnosed 8/08
retro surgery scheduled nov. 17 at boston medical
there is a tennis ball in my ear!! at least it feels like it.

mimoore

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Re: new here...so frustrated i want to scream!!!
« Reply #32 on: September 11, 2008, 06:42:03 pm »
Rant away Carrie!!!!!!!!!! >:( >:(
 Been there done that and totally understand. I was misdiagnosed for at least 10 years, had a tube in my ear from an ENT and when that didn't work wanted to do a sinus window..... the list goes on and then my AN presented itself when I started losing my balance in front of my kindergarten students and my face went numb. One little MRI and there it was the bugger.  I am sooo sorry you or anyone has to go through this but you could not have found a better group of people to support you and who TRULY understand. Take care this will be over soon enough and stressing about it only makes this worse. Easier said then done.
Keep us posted, we are here for you.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

lori67

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Re: new here...so frustrated i want to scream!!!
« Reply #33 on: September 11, 2008, 08:16:45 pm »
Kay and Nancy -

Where were you when I needed you??  Well, if I ever have to have that test again, I'm all set.

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.

Nancy Drew

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Re: new here...so frustrated i want to scream!!!
« Reply #34 on: September 12, 2008, 11:44:33 am »
Now that some celebrity has a new baby called "Zuma", we have a new boy name for Z!!! ;D ;D ;D
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

Zoe

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Re: new here...so frustrated i want to scream!!!
« Reply #35 on: September 12, 2008, 12:00:25 pm »
I hope for the girl's name with Z, that you remember Zoe!!!

It is getting to be more "common" now, but when I was growing up, I think I was the only Zoe in the whole world.  Or at least it felt that way.   I hated it, but luv it now. 8)

Is this what is meant by hijacking????   ;)   Sorry. 
Diagnosed 7/28/08 with 1.7 cm X .6 cm AN in left ear
Some hearing loss
Researching and praying to find a good doctor in northeast OH asap

Nancy Drew

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Re: new here...so frustrated i want to scream!!!
« Reply #36 on: September 12, 2008, 12:17:44 pm »
My "Z" girl name was Zoe.  I love that name.  Didn't even have to think twice about that one.  Zach was my "Z" boy name.  I like that one also.  Almost named my son that, but Steven it was instead.  Please send good thoughts to my "S" boy name who is leaving for Iraq in November :(.  Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

ppearl214

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Re: new here...so frustrated i want to scream!!!
« Reply #37 on: September 12, 2008, 12:29:34 pm »
Let's get back on topic folks!

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

MAlegant

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Re: new here...so frustrated i want to scream!!!
« Reply #38 on: September 12, 2008, 04:25:12 pm »
Have I mentioned that this is my favorite place to rant?  Really, it's the only place you do it and feel supported and understood totally.  We also seem to share a fair amount of joy, which is often.  You will feel that way when it's all said and done.
Write again,
Marci


3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Nancy Drew

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Re: new here...so frustrated i want to scream!!!
« Reply #39 on: September 12, 2008, 05:16:40 pm »
Hi Carrie,

Hope you are feeling OK today.  There are so many ups and downs trying to deal with these ANs.  To stay on topic about wanting to scream . . .  I went to a Rockies baseball game last weekend, and it was the perfect place to scream.  It helped a lot.  So many emotions get pent up, and it is especially difficult to deal with the AN stuff when there is so much going on in one's life.  Hang in there.  Thinking of you.

Nancy
12/05 AN diagnosed left ear 4.5mm
06/08 6mm
Gamma Knife 10/21/08
1 year MRI  6.8mm x 5.5mm
2 year MRI  5.9mm x 4.9mm
3 year MRI  6.5mm x 6.0mm 
Slight Hearing Loss Post GK

Swedish Gamma Knife Center
Englewood, CO
Dr. Robert Feehs

scarriegirl

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Re: new here...so frustrated i want to scream!!!
« Reply #40 on: September 12, 2008, 09:44:35 pm »
someone should start another post about the vestibular testing so we who are facing it know what to expect!!

back to my particular need to scream.....as much as i want people to reach out to me, i also feel like i am wrapping a big fuzzy emotional blankie around myself and only letting certain people in.  i want to yell at people to go away....and yell at them to come closer.  it is a huge conflict.  and emotionally exhausting.  anyone else felt like this???  hearing your opinions and experiences is helping me so much to get through the time i have to wait till my neurosurgical consult on wed.  learning all i can is the only thing that makes me feel like i'm doing anything proactive. 

xx
carrie
"when you reach the end of the rainbow there's always another color!"
finally diagnosed 8/08
retro surgery scheduled nov. 17 at boston medical
there is a tennis ball in my ear!! at least it feels like it.

MAlegant

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Re: new here...so frustrated i want to scream!!!
« Reply #41 on: September 13, 2008, 06:59:01 am »
Hi Carrie,
Yes, I understand exactly what you mean.  It's a combination of "I need you all to take care of me" and "go away so I can deal with this".  If I had more time between dx and surgery I would have seen my therapist.  As it was, one of the doctor's I saw put me on Zanax (sp?) and that really helped a great deal, though I cut the pills in half.  I did see my therapist a few times after surgery.  I also felt myself trying to be strong for those closest to me (I didn't want them to be scared) but allowed a dear friend to know just how terrified I was.  Even now, with the side-effects (relatively minor but driving me crazy), I tell most people I'm just fine. 
Hang in there.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wendysig

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Re: new here...so frustrated i want to scream!!!
« Reply #42 on: September 14, 2008, 08:55:43 am »
Carrie,
I can relate to how you are feeling too.  The only people I wanted to talk to about this were my doctor,  older sister and my youngest brother and the people here on this forum.  Others who knew were too freaked out themselves to really be of much help and sometimes made me feel worse or like I needed to comfort them.  Learning everything I could about ANs and their treatment was the best thing I did for myself.  It made me feel more in control of the situation and led to my certainty that my choice of treatment was right for me.  Ranting is a necessary part of the process for many of us, especially when you've decided what to do and it seems so far away.  Hang in there.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

sgerrard

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Re: new here...so frustrated i want to scream!!!
« Reply #43 on: September 14, 2008, 02:54:22 pm »
Hi Cheri,

Yes. ABR is auditory brainstem response, so that one is about the status of the hearing nerve itself. It involves a wire taped to your head, and clicks in an ear piece. The balance tests can tell if the superior or inferior nerve is affected - usually one of the two branches is the origin of the AN. In my case it was the inferior, the more common origin, which has less of an impact on overall balance. I hope that is the case for you, too!

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Debbi

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Re: new here...so frustrated i want to scream!!!
« Reply #44 on: September 14, 2008, 04:35:58 pm »
Carrie-  that would be the "jeckel/hyde" phenomenum!  And, yes, I went through it too.  I've also felt like that at times post surgery too - sometimes it's all I want to talk about and other times I almost feel annoyed if someone asks me how I'm feeling.  I am normally a really nice person, so when I get those "go away" moments I almost want to ask myself - who the heck are you and what are you doing in my body??   ;D  It helps to let those closest to you know that you may sometimes just not want to talk - it kind of takes some of the pressure off when you are feeling like you'd rather be left alone.  Gads, I am rambling a bit here - sorry.  I hope this makes sense?

Debbi - come closer ... no, get away! :D
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com