ANA Discussion Forum
General Category => NF2 => Topic started by: Cheryl R on February 20, 2008, 11:11:46 am
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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
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Will keep up with you -- of course you will be in our thoughts and prayers!
K
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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
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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
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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
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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
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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
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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
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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!!!!!!!
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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
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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
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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
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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
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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!
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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
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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.
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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
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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
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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
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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
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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
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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!
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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!
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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
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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
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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