Author Topic: Here I go again!  (Read 8724 times)

Cheryl R

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Here I go again!
« on: February 20, 2008, 11:11:46 am »
I will be having surgery no 4 on April 17th.     This will be followed by a cochlear implant 3 weeks later.    I am NF2 for the ones who do not know my story with 3 previous surgeries on the right-- 2 tumors and 1 CSF leak.    We have been watching the tumor on the left which is now 17 mm.  I have had a great deal of hearing loss on the left.     My neurotologist feels if we wait too long than he will not be able to save the hearing nerve to do the cochlear implant.  This will be a mid fossa.   He has done 6 CI's on NF2 with most but not all successful so we were trying to wait as long as possible.                     My dr is having to be gone most of March which is why we are having to wait until we are.          He did mention he could do it next weelk.     Excuse me,I can not get my life in order in a week!
    I have also decided to retire from working which something I have thinking of for a time now due to my increasing hearing loss.     I have been eligible for some retirement benefits since last June as turned 55 but made it this long.     This is going to be very hard as will miss working as an nurse in a small rural hospital,even though am only part time.          If in time I get back to functioning well, than could go back and work on as needed basis.   
   I was hoping to have a little more time before I had to face this.   I knew it was coming and will adjust but it is not easy. 
                                                    Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Kaybo

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Re: Here I go again!
« Reply #1 on: February 20, 2008, 01:37:46 pm »
Will keep up with you -- of course you will be in our thoughts and prayers!
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!

Brendalu

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Re: Here I go again!
« Reply #2 on: February 20, 2008, 02:52:40 pm »
Cheryl,
My thoughts and prayers are with you.  I know that everything will turn out great for you.  Pirate socks ready and waiting.
Hugs,,,,,,
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

tony

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Re: Here I go again!
« Reply #3 on: February 20, 2008, 03:58:26 pm »
I was sorry to hear your news and I am sure it will go OK for you
the C/I goes well for your future.
 In terms of its successful deployment  for you
- it is usually thought to work rather better
for those who have good lipreading skills.
Now I am sure your life is a turmoil right now
- I am sure all of us would be the same
If you can find space for an intensive training course
- it might make a big difference for you
and speed your recovery
Can I wish you all the best
Tony

nancyann

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Re: Here I go again!
« Reply #4 on: February 20, 2008, 04:22:21 pm »
Cheryl:  I can't imagine what you're going through.....  I don't know what to say.

I will certainly keep you in my thoughts & prayers.   Nancy
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
right facial paralysis
good to go.

Jeff

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Re: Here I go again!
« Reply #5 on: February 20, 2008, 04:42:13 pm »
Hi Cheryl,
I will be praying for you. I know that this is a tough time but I know that you will get through it. Congratulations on your retirement! I am glad that you were able to make that choice. And, on a practical side, keep looking at people's mouths when they speak. It will help you to make the adjustments that you face. I wish you the best.
Jeff
NF2
multiple AN surgeries
last surgery June 08

Cheryl R

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Re: Here I go again!
« Reply #6 on: February 20, 2008, 04:44:08 pm »
Thank you to everyone.     I am doing ok.     I have done so well after all my other surgeries as far as post op( even though did have the CSF leak) and just hope this does too.      The balance issue is the most scary to me.    It will be interesting to see if I have compensated any.            With all myother surgeries I was up on my own walking on day 2 with only feeling weak,  
  I am finding I am maybe doing more lip reading than I think I have been and I know that is part of cochlear implant success.               The CI coordinator we talked to says sign is very hard for older people to learn and to just try for some simple stuff.                      Yes, that all will be part of the pre surgery work here now.  
          My  "family" here is what helps keep me going.
                                                        Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Static

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Re: Here I go again!
« Reply #7 on: February 20, 2008, 04:52:04 pm »
Cheryl,
As always, I'm thinking of you.  I know you are educated enough on NF-2 to make good choices for yourself.  Take care of yourself and hopefully things will work out as best as they can at this point.  Hang in there and if the power of thought can get you through, you will be fine  ;)
~Karen
3.5cm AN removed 1-21-04
CSF leak repaired 5/04
SSD Right

Gennysmom

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Re: Here I go again!
« Reply #8 on: February 20, 2008, 06:05:36 pm »
Cheryl....thanks for the note on this....replied on the private email, but in re: to what Jeff said...I think I mentioned this to you before, but for any others out there as well...watch TV, talk shows and news are good because they're talking to the camera, with the sound muted, and you can check yourself with the Closed Captioning.  I'm guessing you're better than you think you are, as until I lost my hearing in one ear and really noticed how much I was lip-reading, I didn't think I was as good as I was.  My hairdresser likes to talk to me looking into the mirror without making a sound as he's cutting my hair, and the scary thing is I can understand him!

Take care, lots of hugs!!!!!!!
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

jerseygirl

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Re: Here I go again!
« Reply #9 on: February 20, 2008, 06:38:05 pm »
Cheryl,

Your life must be difficult right now but we are all here for you! Many hugs and best wishes! I hope everything will go smoothly. I have seen a lady who was deaf since birth and had CI implanted. She has language and actually works in marketing where you need to hear other people. She does talk funny, almost like an accent, but she works and is very persistent. I will be thinking of you on your surgery day.

           Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Raven

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Re: Here I go again!
« Reply #10 on: February 20, 2008, 06:51:55 pm »
Cheryl................ I wish you all the best, you deserve it! Please keep us posted on the CI, there doesn't seem to be anybody on the board that has one.

Balance may be an issue, I know it is for me and there is a chance it won't get any better. Everything in the background looks like it is bouncing when you are walking, trust me, I know!

Did the subject of MRIs come up when you have a cochlear implant, I understand it is complicated.

John
« Last Edit: February 20, 2008, 07:02:01 pm by Raven »
7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

matti

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Re: Here I go again!
« Reply #11 on: February 20, 2008, 08:39:14 pm »
Cheryl - Sending a big hug to you. You always had/have a strong and positive spirit and I know that will get you through this.  You are always everyone's cheerleader here, hope we can all do the same for you.

Hugs,
Cheryl
3.5 cm  - left side  Single sided deafness 
Middle Fossa Approach - California Ear Institute at Stanford - July 1998
Dr. Joseph Roberson and Dr. Gary Steinberg
Life is great at 50

Dealy

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Re: Here I go again!
« Reply #12 on: February 21, 2008, 05:58:04 am »
My Prayers and Thoughts are with you on this journey. My wife and I are taking Sign language. We have learned around 40 words we can sign in a month and a half and can sign our names. I hope and Pray your CI works for you. I know when I have my hearing aid out and people talk too me I am constantly trying too read their lips-not always succedding though- Best Wishes- Take care- Ron

Omaschwannoma

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Re: Here I go again!
« Reply #13 on: February 21, 2008, 10:47:23 am »
Hi Cheryl,

Good thoughts to you now and on surgery day.  May your doctors perform your surgery with great skill and may you have a successful outcome (arms around you hugging). 

I am presently taking lip reading classes and they definately help.  A little tip I learned from my teacher (deaf with CI and you'd never know it)--instead of focusing on the mouth, focus on the nose.  Another exercise is to sit in front of a mirror so you can see your lips moving while you are reading sentences, then have your hubby "lip" the same sentences.  This gets one accustomed to different mouths and how that mouth looks while forming letters.  I will also be taking sign language as I would like to, in the future, teach yoga to the deaf/HOH.  Keep us informed of your progress as we all care about you!
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

Cheryl R

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Re: Here I go again!
« Reply #14 on: February 21, 2008, 10:54:30 am »
Thank you for the tips.   It is interesting how some people are harder to lip read than others. 
Where did you find a class at?     I haven't come across any but have not searched extensively.
    I really have appreciated everyones concern.     I may know what to expect at surgery time but it is not knowing what the long term will be that is hard.
                                               Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

 


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