ANA Discussion Forum
General Category => NF2 => Topic started by: Jeff on June 06, 2008, 08:34:58 am
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Hello friends,
I want to let you know that I will be having surgery on the 13th to receive an Auditory Brainstem Implant. Here is a link to information about the ABI (Thanks Debbi) http://www.mayoclinic.org/auditory-brainstem-implant/ (http://www.mayoclinic.org/auditory-brainstem-implant/) Thankfully, I have no tumor to be removed, so I am hoping that this will be an easier surgery. This will complete my surgery set: One retrosigmoid and one translab on each side. Such balance!
The decision to have surgery again was not an easy one, for me or the doctors. We had a number of discussions about safety and viability. In the end, I am looking at approximately 20 more years until I can retire. Work is quite stressful being deaf, although most of my supervisors, colleagues, and students have been great. I also have a wife and daughter whose life would be better if I could hear something.
So, I am traveling to Los Angeles next week for the surgery. Doctors Friedman and Hitselberger will perform the procedure. I will post as soon as I can afterward, maybe even from the 6th floor with my Blackberry!
Jeff
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Jeff-
I went to Mayo's website as they apparently do this implant too - wow, fascinating technology! I will check back on HEIs site when it is up again as I would like to read more about this. You must be very excited/anxious about the upcoming surgery. This could really be life changing, couldn't it? I will check back to see how you are doing - and in the meantime, sending you lots of good wishes for the surgery.
Make sure you put it on the calendar, okay? I now lots of others on this forum will be very anxious to learn about the results.
Debbi
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Jeff -
you amaze me. You have such an upbeat attitude :)
I hope your results are exactly what you want them to be and I can't wait until the HEI link is working so I can find out more about the surgery.
I can only imagine how difficult this decision was for you, but I am confident you and your doctors made a very informed choice.
I will be thinking about you on the 13th and anxiously awaiting your update as a "postie one more time".
Good luck,
Jan
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Jeff,
Wishing you all the successes for a fabulous outcome! My hope for you is to be able to hear beyond your wildest dreams!
Good-luck
Jackie
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Jeff,
As others have observed in other posts, I am for some reason a fan of head mounted appliances. 8)
The ABI sounds very intriguing to me. I look forward to a report on what you hear with it. Are you getting it on one side or both? If on one side, how do you pick which side?
I hope the surgery goes smoothly, and that you get a great result from the implant(s). Best wishes!
Steve
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Jeff~
WOW!! How exciting! Good luck to you - you will be in my thoughts & prayers!
K
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Good luck Jeff
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Jeff -
thanks for the link; very educational. The ABI looks very high tech :)
I never knew such a thing existed - the miracles of modern science never cease to amaze me!
I thought my BAHA was very cool, but the ABI looks even cooler 8)
Jan
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Jeff: This is wonderful news ! ! I am so happy for you.
Just 1 week away ! !
Always good thoughts, Nancy
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Jeff,
Pirate sox, prayers and good thoughts are headed your way.
Brenda
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Jeff,
You are in my prayers... May God protect you and give you the best outcome possible.
marg
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May you be safe, may you have an excellent outcome, may your doctors and nurses be blessed and may they perform with great skill. I look forward to hearing from you after your recovery. Peace.
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Jeff:
All I can add is my own prayers and good wishes for your upcoming acoustic surgery. Please try to update us when you're able.Thanks.
Jim
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Thank you everyone for your encouragement and kind words. I am now in Los Angeles and will have a day full of appointments tomorrow. Yes, the ABI is fascinating technology. it is not placed bilaterally. Usually, it is implanted during tumor removal surgery.I had one implanted in 2003 when I had my first tumor removed. Unfortunately, the electrodes that the doctors place on the brainstem moved after my surgery. So, when it is stimulated, it makes some odd sensations, but no sound. My brother has an ABI and I have seen that it really helps him to communicate. He told me the other day that he dropped his keys and heard the sound, turned around, and picked them up. Those are the types of benefits that I am hoping for. Mostly, I am just hoping to wake up Friday.
Thank you again everybody,
Jeff
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Jeff -
my thought and prayers are with you - as are the thoughts and prayers of many others.
I hope everything turns out well on Friday.
Jan
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Jeff - the best of luck to you!
This is wonderful technology. I'm glad your brother has benefitted from it, and I hope you are able to hear all the sounds around you soon too! Who would ever have thought that hearing your keys drop could be such a wonderful sound?
I'll have my fingers crossed for you!
Lori
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Jeff,
Best wishes for a very successful surgery! Hope everything works out perfectly for you! What did the doctors say about the MRI? will implant function as soon as you put it in so that you know right away?
Eve
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Thank you everyone. I had my pre-op appointments today. The docotors were very glad to see me getting around as well as I do. One doctor thought that I would be in a wheelchair.
My MRI was the subject of many discussions. In the end, the analysis was that my cerebellum shows atrophy because of the swelling that I had last time. In addition, they had to remove part of it so that they could close me up. So it makes sense that it would show atrophy.
My brainstem looked fine, however. This is where they place the ABI electrodes. They see no reason for it not to work.
They can test it after they place it. They do this electronically somehow. I have to return in 6 weeks to have it stimulated for the 1st time. This is the standard waiting period to allow the swelling to go down.
This all went well on my first side, but after the surgery, the electrodes moved.
There is also no way to tell whether the cochlear nucleus, the area of the brainstem responsible for sound sensations, has been damaged by the tumor.
So, we are cautiously optimistic.
One of the reasons that I decided to do this is that I would always wonder if it would have worked. At least this way I will know that I tried.
Now, the next step of the journey begins. God bless you all.
Jeff
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Jeff, You well know how you have been such an inspiration to me and you will be in my thoughts and prayers tomorrow. I hope you turn out as lucky as I just did as we really do understand what it all means to have some hearing.
One of your fellow NF2ers, Cheryl R
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Jeff -
was thinking about you today and hoping everything turned out well.
Hope to hear from you soon.
Jan
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Jeff-
Hoping that all went well - keeping fingers crossed, and sending you good thoughts and prayers.
Debbi
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Thank you everyone. I am out of ICU and feeling better rapidly.
The doctors said that the ABI stimulated beautifully. I also successfully had the 7/12 nerve graft.
Feeling 0tired enough to lay in bed, but good enough that i want to get up and move around.
Thanks for checking on me. More later.
Jeff
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GREAT Jeff!!
So excited for you!!
K
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Wonderful news ! ! & a nerve graft to boot ! !
Continued healing my friend, Always good thoughts, Nancy
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Wow, Jeff - so good! I am sending lots of good energy, prayers, karma your way - can't wait to hear progress report.
Debbi - hooked up to my IV in NJ...
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So glad to hear from you Jeff, and that the surgery went very well!
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Jeff,
Congratulations! I was anxiously waiting for good news about you! That is just wonderful!
Eve
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Incredible news, Jeff ;D
Everything sounds very positive. I'm so glad things went well.
Jan
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Jeff, I am so very happy to hear of your surgery going well and hope the ABI works much better than you ever dreamed it could. I was thinking of you Fri and hoping for the best.
Having to have multiple surgeries is not fun and hope we both do not have to have any more.
Cheryl R
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Having to have multiple surgeries is not fun and hope we both do not have to have any more.
I'll vote for that, Cheryl. I don't know how some of you guys do it :)
Jan
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So glad both your surgeries went well, Jeff! Hope the ABI meets your wildest expectations, that your face reanimates speedily (I had a 7-12 also; took about 5 or 6 months to see results), and that you need NO MORE SURGERY!
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Thank you for the kind thoughts. I have been discharged now. Next, the boring recovery process. I can see that I am getting better each day. It is a relief to be out. Compared to 7 weeks last year, the 4 days breezed by.
Best wishes to everyone. I will update soon.
Jeff
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Jeff,
So glad that you are out of the hospital and feeling better daily. Can't wait to read more good reports.
marg
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Jeff,
You made this initial post 2 weeks ago… and I only just this morning caught it. :-\ I have been so busy since my kids got out of school that I somehow missed this one. ::)
WOW! 8) You are an amazing man. You are truly an inspiration to us all.
I have been humming and hahing about the baha the last little while. During this reflection I was always asking myself,
“MMMM I wonder if there is a technology our there for my buddy Jeff? There just has to be something…�
Before Christmas, while shopping at the Washington Square Mal, I actually saw a toddler wearing one of these and I went over and asked the mother about it. (When I wear my “deaf left� pin people are more at ease when I start asking questions about hearing aids.) She mentioned to me that her son was born deaf and that these are now used in children early- to help them developmentally. In fact this is an alternative to teaching early signing as it allows better learning of lip reading and resonate sounds etc. Her only complaint was that her toddler kept taking these off and tossing it like a toy and she was having a hard time keeping it on him- at that age.
I am so pleased to read your post here. I think of you often and today I have you in my prayers.
You are an amazing man Jeff- truly amazing.
Daisy Head Maizy
P.S. Has there been any improvement in the HEI St. Vincent cafeteria food since last year?
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Thank you Marg and Maizy. I hope you are both well.
And about the food: little has changed. I have come to view it in a completely utilitarian way. I eat it because you have to to be released. And, I look at it as an opportunity to change my eating habits. No more pot of coffee in the morning! The entrees, fruits, and vegetables are good for me, although I am tiring of the fish entree that is frequently served.
Take care,
Jeff
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Jeff,
You are an inspiration to all of us! I extend "well-wishes," your way. Thank you for your help you extended to me!
Palace
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Jeff- Been a while since I replied to one of your threads. We are so busy at work that I just come home exhausted and so tired. Some times I go for a week or more before I even look at this sight or open my e-mail. I can relate to the deafness though. Without my hearing aid-I hear hardly nothing but muffled sounds. I do not blame you for looking into the ABI stem. I so hope it will give you some form of hearing ability. You have been through so much. You deserve this-it would be like your small little miracle. My wife and I are still learning sign language. We are up too around 200 words-however that still does not replace actual hearing. My TN has gotten less-still on Neurontin- so I am hoping that my 2 year MRI- post radiation that I am having in July will show continued cell death-necrosis or at least tumor is still stable. If that turns out okay-I will not have another MRI for another year. However-with these darn things you are never out of the woods I guess. God Bless and take Care-you are in my prayers and thoughts. Ron
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Thanks Ron,
And I know the feeling. I too arrive home exhausted mentally and physically. And I think that it is understandable that you want to separate yourself from this It is no fun! Best wishes on your MRI. I will pray that the scans are fine and your TM subsides. Take care my friend,
Jeff
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Woo Hoo!!!!
I am out of here! Hello! I just returned from my final post-operative appointment. I have been released to go home! AND, I get to drive now!
I have had 4 craniotomies, and this has been the easiest recovery. I still get fatigued, and have some swallowing issues, but I think that both will improve.
I have learned how fortunate I am to be in this condition. My doctors were all surprised to see me walking -- they thought that I would still be using a wheelchair. We went to visit the Physical Therapist who worked with me last year, and she thought that it was great that I was walking with a cane (my wife bought me one to use on sloping sidewalks and uneven ground). I hadn't used one since last August. When my wife told the PT, she was really impressed. I saw one of the fellows in the cafeteria (one who knew me from last year), and he emailed my doctor telling him how well he thought I was doing.
We will travel home tomorrow and Weds. I am really looking forward to seeing my daughter again! :)
We return to LA at the end of next month to have my ABI tested. I am beginning to allow myself to feel some optimism.
To all of you who posted words of encouragement and prayed for me: Thank you. They mean a lot. I will post again when I arrive at home.
Please take care,
Jeff
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Jeff -
incredible news! Sorry you've had to go through so much, but am glad that this has been your easiest recovery.
I'll bet your daughter is looking forward to seeing you too ;D
Please let us know how your ABI testing goes.
Jan
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Jeff,
I'm so thrilled for you! I guess after 4 craniotomies, you've got this down pretty well, huh? Let's hope this is the last one!
Enjoy home and your daughter! And I'll keep the prayers coming your way!
Have a safe trip!
Lori
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Jeff,
You are so awesome. I am VERY proud of you...
You continue to inspire us all!
Now Jim Scott- Jeff Who Overcame "Château Deaf is a AN survivor story well worth putting into print. His story is much braver than How Starbuck Saved My Life…
http://www.amazon.com/How-Starbucks-Saved-Life-Privilege/dp/1592402860
he just needs an eloquent writer with time :-X to put it on paper (Jeff is too busy getting well, and inspiring the world of people who witness his progress and determination).. mmmm ;D
For those of you readers who are unfamiliar with Jeff’s story of amazing bravery and courage here are some links:
"Château deaf"?
http://anausa.org/forum/index.php?topic=3281.0
http://anausa.org/forum/index.php?topic=5310.0
&
http://anausa.org/forum/index.php?topic=5313.0
What Jeff is so quiet about is that he is acknowledged not only just by people on this forum but by others in his field of education- all who applaud him.
I will share a quote without naming my source:
(Jeff’s) "… resourcefulness, professionalism, sense of humor, courage and unending determination make him a respected role model for the students and staff …
Each day, having Jeff as our inspiration, helps to make all of us better educators and people. "
I could see Jim Scott, our resident eloquent writer :), and Jeff putting a story on paper that would captivate many a reader- not just us ANA family. Does anyone else see this -bedsides me?
Way to go Jeff! Celebrate with “Mrs. Jeff� ;D – she too deserves an award and recognition.
Have a safe flight home!
Cheers,
Daisy Head Maizy
P.S. It was 11 months ago I was a terrified and overwhelmed patient who wrote to you for help - via this forum. Thank you for taking the time … amidst all your recovery obstacles to help another patient… You are my Hero! :-*
You ARE awesome...
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Jeff,
Great news...........for a change, huh. Get well my friend. I will be watching your progress, keep us posted.
John
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Hi Jeff: So happy to hear the wonderful news ! ! Time for some R & R.
Will keep good thoughts for your continued healing, Nancy
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Great news Jeff ! ;D So glad that the recovery is not as hard this time.... keep us posted.
Marg
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Jeff -
I don't know why it took me so long to clue into this, but isn't your daughter the one who was in the princess contest that Battyprincess (Michelle) asked us to vote for?
I'm sorry your daughter didn't get the most votes - I think the contest was rigged - but she sure is a beautiful little girl.
Jan
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Hi Jan,
Nope, wasn't me. We didn't enter my daughter in a contest. But.....thanks anyway.
Jeff
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Home at last! We arrived home Wednesday afternoon. The trip was tiring, but uneventful.
I am getting stronger daily. Yesterday, I drove on some errands. It is nice to have things getting back to normal.
Now, I'll just take it easy and dream of hearing something with my ABI which will be tested July 23rd, after the swelling has subsided.
I thank all of you again for your kind and encouraging words.
Cheers,
Jeff
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Nope, wasn't me. We didn't enter my daughter in a contest. But.....thanks anyway.
Oops! Sorry; it must have been another Jeff :-[
Glad to hear you're home and things are getting back to normal.
Jan
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Jeff, I'm so glad you are feeling stronger each day.... I'm praying for you that your ABI will work great !
marg
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Jeff -
I just realized that your ABI was scheduled to be tested on the 23rd. Anything you can share with us yet?
Jan
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Yes I can. It works!!! I am traveling home right now and will post more later. Thanks for asking....
Jeff
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YAHOO!
8) :) 8)
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Jeff -
excellent news! ;D ;D ;D
Can't wait to hear more details once you get home.
Jan
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Well, I am home and somewhat rested.
I had my initial appointment the afternoon of July 23rd. The audiologist connected the speech processor (little computer box that converts sound into digital impulses) to his computer. Then he connected it to me with the external apparatus. He then tested each electrode individually by gradually increasing the signal level until I began hearing something. I heard sound on all but a few, but some gave me uncomfortable side effects so they are not used in my program. I think that I am using 12 of the 24 electrodes. I hear mainly two pitches, so most things sound the same. However, I do notice differences in timbre. I described this to my wife like someone playing the same note on a xylophone but using mallets that are made of different materials. So, I am learning to hear all over again. I can't yet distinguish much between the sounds that I hear, but I guess that will come with time.
We are thrilled and extremely thankful that this is working. And there is hope that our lives will improve.
Take care,
Jeff
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Jeff: I am so so happy for you ! ! Hearing sound again ! ! & this is just the beginning !
It is music to my ears ( & yours !).
Always good thoughts, Nancy
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Jeff, I am so happy to hear of the success of the ABI. I have read anyway that one has to adjust to it so hope it gets better and better in time.
The waiting and not knowing if and how it would work had to be hard. I hope you have a good rest of the summer. Keep us posted how well it does go. Hopefully an ABI will not be in my future but with NF2 one never knows what may happen.
Super news to hear from you! Cheryl R
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Jeff:
tap tap...tap tap tap...tap...tap tap. :)
Steve
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Jeff -
the ABI sounds incredible.
I am thrilled for you!! ;D
Jan
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Jeff is my hero! ;D
So inspirational he is… 8)
DHM
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Jeff,
Your news on your ABI and being able to hear is wonderful! I'm very thrilled for you and pray for you that every day will bring more and more recognition.
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Jeff,
I'm so glad that your ABI is working ! ;D
marg
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Jeff:
I'm embarrassingly late to this thread update but please accept my congratulations on the success of your implant and my hope and prayer that your hearing ability continues to benefit from the device.
Jim
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To all who have responded:
Thank you so much for your kind words and encouragement. These past 15 months have been diificult, to say the least. I believe that this ABI will make a positive difference in my life. It already has! With time, I will learn to use it better. I can't tell you how nice it is to hear a sound that relates to something that I see happen.
Life is getting better......
Jeff
P.S. Jim: No need to be embarrassed - I am happy that people don't always respond right away. To me, it means that they are thinking about things other than AN. And I think that this is good. ;D
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Jeff,
Pls add me to the embarrassed list :-[
Many congrats to you and hope you are doing well!
Phyl
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Jeff~
I am not going to be embarrassed because I have been so busy traveling and then horrible DSL problems, but I am SOOOOO HAPPY for you!! Continued blessings and peace as your family trasitions into this new phase - may it truly enhance your lives.
K
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Well, if the rest of you late comers don't have to be embarrassed, then I don't have to be either! Better late than never, right?
Jeff, I am so happy that things are going well with your ABI! I can't even imagine how excited you must be that you are given a chance to learn to hear again! It's just amazing. I hope you are enjoying the noise!! ;D
Here's a great big "HOORAY!" from me!
Lori
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Update:
I have been using the ABI for roughly one month now, and it has made a huge difference in my life. I have already had more, and longer, conversations since last month than I had during the entire 15 months that I was totally deaf. It's just that much easier to talk to me. I do well in quiet, one-on-one settings. I have returned to work and can successfully talk to my colleagues. Next week, the true test begins....I begin teaching my classes. I am expecting things to be much better this year. I may have some difficulties understanding exactly what is said, but at least I will know when someone is speaking! Right now, I am battling fatigue. I am approximately 10 weeks past my latest surgery, and I am not back to 100% yet. I know that will come with time.
I will update soon...........
Take care all,
Jeff
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Jeff- I was so happy to read your post today. I am so very glad that the ABI has given you the ability to hear again, even if it is different than it "once was." It must truly be amazing to hear again and I am thrilled for you.
God bless, and continued good fortune.
Debbi, your fan in NJ
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Jeff~
So happy that this has worked for you...truly a modern day miracle!! ;D
Continued good results,
K
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Jeff -
this is fantastic news! I know how thrilled I was to get my BAHA after 12 months of being SSD, so I can kind of relate to how you feel about your ABI.
I'm hopeful your fatigue will get better in time.
Thanks for the update,
Jan
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Jeff,
Very glad to hear you are able to carry on more conversations, especially with those you love. How does the ABI work for you in noisier environments, large rooms? Hoping you get back to teaching soon as being productive makes me feel good, especially knowing it helps others. May your fatigue decrease with every day.
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Jeff,
I am SO glad this is working for you and is improving your quality of life.
What pleases me, the most, is that the implant is assisting you- as you had hoped? You are truly inspirational!
I am curious- is there an increase in tinnitus since the implant? I ask this as my own tinnitus is increased by sound input into the non-deaf ear (to ring in the deaf ear???) Tinnitus is what fatigues me more than anything. This is why I walk around with an earplug in the good ear- particularly in loud public places… to dampen the sound input.
I ask as I am curious as it if I get a Baha implant -will this actually make my own tinnitus worse?
I am also very curious to see how the implant improves your classroom situation. Keep us posted.
DHM
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Jeff,
That is amazing news, I had no idea that you could get that far in a month. Having conversations is great; teaching a class seems astonishing to me. I am curious about how much you hear, and what you hear. Can you make out complete words and sentences? Like DHM, I am also curious if tinnitus comes back with it.
I hope the dazzling results continue and the fatigue fades away.
Steve
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DHM -
hijacking here.
It is my understanding that the BAHA has no affect on tinnitus.
If you have it pre-BAHA you will continue to have it and it won't be any more or any less than it was.
If you don't have it pre-BAHA, having the implant will not cause it.
I didn't have tinnitus prior to my implant and thankfully, I still don't.
Jan
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Jeff -
I'm with Steve - being able to teach is just an awesome accomplishment! Just goes to prove, we AN folks are tougher than the general population!
I truly admire you - you seem to overcome challenges that some people wouldn't even attempt to deal with. You remind us all that we can handle bigger things than we ever thought we could. Thank you for that!
Lori - un-hijacking Jan's hi-jack :P
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Thank you for the kind words everyone.........I guess we never know how we will handle things until we are forced to deal with them. Personally, I am driven by my preference to eat on a regular basis and to maintain a place to live where my family and I are protected from the elements.
As to what I hear; that's difficult to describe. The sounds that I hear are all very electronic. I hear few pitches - Imagine playing each key on a piano starting from the lowest and going to the highest. They all sound the same to me. I can hear syllables and rhythm of speech, but I cannot understand it without lip reading too. Everyone's voice sounds the same, even my own. I tell people that we all sound like robots. And, for those Charlie Brown fans, remember his teacher Mrs. Othmar on the TV shows. People sound similar to that.
I do best in face-to-face one-on-one conversations, where people talk slowly and enunciate. Group situations are not good. Many times, in normal conversations, topics change quickly, and speaking bounces from person to person quickly. I still cannot keep up with that. I get bits and pieces, but not enough to know what is going on. In my classroom, I can hear when someone is talking out of turn, and I can usually locate them. And I can hear that the daily announcemnts are being made over the intercom, even though I can't understand them. So the ABI definitely helps.
When I was reading about the ABI years ago, I ran into this cochlear implant simulation. I remember the demonstration with a Johnny Cash song. Although not exactly the same, I seem to remember in my mind the one channel demonstration. I hear sounds that are similar to the way I remember hear the dem. Here is a link to the demonstrations: http://www.hei.org/research/aip/audiodemos.htm (http://www.hei.org/research/aip/audiodemos.htm)
Have a great weekend!
Jeff
I forgot to mention tinnitus. I have what I would describe as rip roaring tinnitus. It is fairly high pitched on one side. But after my surgery last year, When I finally woke up, I have something that sounds like the engine room of a ship on the other side. Neither goes away - ever. I decided years ago not to pay attention to it. However, since I had nothing else to listen to, I did tune in and analyze it some. I have found that nothing, including sounds from my ABI, affect it. It does not change in terms of volume or pitch, no matter what the external input.
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Wow, Jeff - thanks for the link, I found it extremely interesting - especially the music.
Thanks also for the wonderful explanation of what you are able to hear. I had no idea what kinds of sounds the ABI would give you and although it's different than what I expected, it still sounds like an incredible option for those who are ABI candidates.
Have a great weekend yourself :)
Jan
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So Jeff, what you're saying is you're spoiled? I suppose you want running water in that shelter of yours too, right? :D
Thanks for the explanation. We were discussing different types of implanted hearing aids in my sign language class last week and since I am the only one who knows anything about them, I can try to explain the ABI to them. Not that I know a lot, mind you, but more than the rest of the class, which makes me the expert! ;D
And I love Charlie Brown, but I have to say, I never knew his teacher had a name! You learn something every day!
Lori
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Jeff,
It sounds to me like you will be confronting an entire classroom of mini Darth Vaders. May the force be with you. :D
Steve
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And I love Charlie Brown, but I have to say, I never knew his teacher had a name! You learn something every day!
I never knew Charlie's teacher had a name either - but I definitely remember the sound she made when she talked. Kind of a wonky sound.
Jan