Author Topic: Here I go again!  (Read 10749 times)

Omaschwannoma

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Re: Here I go again!
« Reply #15 on: February 21, 2008, 12:49:29 pm »
My lip reading classes are held at the local library with no cost to the students attending.  Teacher does this out of the goodness of his heart. 
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

lori67

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Re: Here I go again!
« Reply #16 on: February 21, 2008, 01:57:35 pm »
Cheryl, I know the League for the Deaf and Hard of Hearing offers sign language and speech reading classes.  There should be a chapter somewhere near where you live.  I'm currently taking the sign language classes - and there are some "old" people in my class.  Who says you can't teach and "old" dog new tricks!  They're doing just as well as the younger folks in the class.  (I guess I'm right in the middle somewhere).

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.

Raydean

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Re: Here I go again!
« Reply #17 on: February 21, 2008, 02:48:33 pm »
Hi Cheryl

Thought I'd share a suggestion that was given to me.  Since most of us have cell phones and I'm hoping that you do, consider adding a unlimited text package to your plan, or upgrade to a plan that includes texting. ( You want one that is unlimited for both in and out of network, both sending and receiving)  Most carriers have phones that are designed for the heavy texter that has a seperate keyboard which makes texting so easy. I'm betting with a doctor's note that your carrier would work with you in upgrading your phone to something would assist you better.  I have a relative that is hard of hearing(non AN)  and she uses her cell phone to stay in touch with everyone via texting.   I'm share this with the hopes that it'll help and with the hopes that it'll help all of us stay in touch with you better.

Hugs and Love
Raydean

Do not go where the path may lead, go instead where there is no path and leave a trail.

Cheryl R

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Re: Here I go again!
« Reply #18 on: February 22, 2008, 08:31:34 am »
I already have done this.  I got a different phone with bigger keypad and the text message package.       I went to look at a small blackberry US Celluar has but the lady said since I say I am  somewhat tech challenged that just the cell phone might be better. 
I appreciate your note and have your address.        You had  your share of challenges with Chet so you know well the ups and downs of this all.           
                                                   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

Cheryl R

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Re: Here I go again!
« Reply #19 on: February 22, 2008, 08:44:34 am »
I am not looking forward to the balance issue post op and know that will  make it all harder.     Time will tell how it goes.     I do know of a couple vestibular therapists in the area which I am sure I will need. 
They will leave the magnet out of the CI and there is a way of using tape to keep it on manually I was told.     I do know of a lady who has one but is not NF2.  I came across a couple when was on the NF2 forum for a time.      They do not always work for NF2's so I just hope and pray it does for me.                   The Univ of Iowa is a center for CI's and have coordinators and others who work just with them so there seems to be good support for the  CI patients.                 I will need to keep watch with MRI's  since have already had the 2 tumors on the other side. 
                                              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

Cheryl R

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Re: Here I go again!
« Reply #20 on: February 22, 2008, 09:27:43 am »
I had contact with a deaf action center in Des Moines some time back and they made no mention of lip reading class.    They do have sign language classes and one started the first of Jan.   Since Iowa has had a horrible winter I am glad we did not sign up as am around 35 miles from Des Moines.         My daughter has bought some sign language materials so will try those.    I have found some good websites too.                  You are lucky to have the class available.
I do rely on the lip reading more than I think.    Yesterday I had eye dr appt to get new glasses.   The dr had my eye covered with his machine thing and then talked to me.   I just automatically moved it away to see him talk. 
I also resigned from work which is something I am hating to do.   I will miss it,    I have a couple short shifts and one weekend and then will be it.      I could go back in the future if would get good enough to do the job right.   
                                              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

Omaschwannoma

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Re: Here I go again!
« Reply #21 on: February 22, 2008, 05:33:09 pm »
Cheryl,

Found a "link" you might be interested in.  I've heard this talked about in my class.  Check this out and in the meantime I'm emailing my teacher as to another source for you.  Will get back when I've got the info. We had a deaf woman in class learning to lip read, probably she will have more oportunity for other people to talk to and not just people that know sign language.  My teacher said those that have a real need to learn lip reading pick it up more readily.  He went deaf at 15 and has CI now.  He's amazing, you would never know he's deaf except the apparatus on the backside of his ear gives this away. 

By the way, the labyrinthectomy was successful, I was awake for the procedure--creepy.  I feel good, better than before surgery, so I know it was the right thing to do.  Surgeon gave me my hearing bones as I' don't need them.  I feel much better and today noticed the bouncing is down while walking, so will continue with rehab, exercises as home, etc., etc., you know the routine.  Feeling pretty nauseous and dizzy, but not as traumatic as before--whew!  Will be getting the "word" from doctor as I have my follow up with him. 

http://lipreading.com/

All my best!
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

Omaschwannoma

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Re: Here I go again!
« Reply #22 on: March 03, 2008, 12:32:30 pm »
Cheryl,

My teacher just got back to me and said the same as what I've posted to you above--"See What I Say" for lip reading.  Hope this helps!
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 #23 on: March 07, 2008, 10:35:40 am »
I am now a retired nurse as of last Sun.  It is hard to give up working when one is not ready even if one only worked part time.          I do have the option of going back some day if ever get in good enough shape and the future cochlear implant works. 
     I retired Sun and Mon eve our teacher daughter called to say she had fell on the ice leaving school and broke her wrist.   We are just glad it was not when she was holding the baby.  I went and helped out Tues but she is doing real well and back to work.      Luckily it was her left one.   
    I have plenty to do before the April surgery and find I get over whelmed when have too much going on.     What has to get done always seems to, by the time it needs to be done. 
        I am going to pass on the book club,even though love to read.   
     I make a super ham spread for crackers that would be yummy for your slumber party.                                                  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 #24 on: March 07, 2008, 10:40:56 am »
Cheryl~
I will be anxiously awaiting your ham spread at one of the future parties becuase I know you will come through this like a trooper and will be able to join us in the future!!
Glad your daughter is OK...
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!

Kate B

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Re: Here I go again!
« Reply #25 on: March 07, 2008, 07:30:51 pm »
Hi Cheryl,

Consider joining our party and bringing your ham spread..Popcorn and trail mix gets old quick.

Oftentimes the books are on tape.

You are a woman of leisure right now...Whoo Hoo...


Kate
« Last Edit: March 07, 2008, 07:49:24 pm by Kate B »
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

 


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