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Author Topic: one more time  (Read 32508 times)

cmp

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Re: one more time
« Reply #30 on: June 16, 2008, 05:25:22 pm »
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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5 cm AN surgery, Shands Hospital, FL, Dr Albert Rhoton, 1988; VII-XII anastamosis for right-sided facial palsy 1989; diagnosed Feb 2008 w/ 1.8 cm recurrence; drs McKenna & Martuza; surgery rescheduled for 6/24/08!

Jeff

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Re: one more time
« Reply #31 on: June 17, 2008, 05:19:59 pm »
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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NF2
multiple AN surgeries
last surgery June 08

marg

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Re: one more time
« Reply #32 on: June 19, 2008, 11:11:22 pm »
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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Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

4cm in Pacific Northwest

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Re: one more time
« Reply #33 on: June 20, 2008, 06:47:57 am »
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  leftâ€? 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? 
« Last Edit: June 20, 2008, 07:22:56 am by 4cm in Pacific Northwest »
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4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Jeff

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Re: one more time
« Reply #34 on: June 20, 2008, 04:37:25 pm »
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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NF2
multiple AN surgeries
last surgery June 08

Palace

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Re: one more time
« Reply #35 on: June 21, 2008, 12:23:28 am »
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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22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

Dealy

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Re: one more time
« Reply #36 on: June 21, 2008, 06:10:02 am »
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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Jeff

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Re: one more time
« Reply #37 on: June 21, 2008, 12:10:17 pm »
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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NF2
multiple AN surgeries
last surgery June 08

Jeff

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Re: one more time
« Reply #38 on: June 23, 2008, 03:01:43 pm »
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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NF2
multiple AN surgeries
last surgery June 08

leapyrtwins

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Re: one more time
« Reply #39 on: June 23, 2008, 03:13:35 pm »
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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Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

lori67

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Re: one more time
« Reply #40 on: June 23, 2008, 04:35:14 pm »
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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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.

4cm in Pacific Northwest

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Re: one more time
« Reply #41 on: June 23, 2008, 05:59:02 pm »
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. Jeffâ€?  ;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...
« Last Edit: June 23, 2008, 06:05:23 pm by 4cm in Pacific Northwest »
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4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Raven

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Re: one more time
« Reply #42 on: June 23, 2008, 06:59:52 pm »
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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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

nancyann

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Re: one more time
« Reply #43 on: June 24, 2008, 06:32:38 am »
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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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
2.4 Gm. Platinum chain 2017
right facial paralysis

marg

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Re: one more time
« Reply #44 on: June 25, 2008, 12:21:59 am »
Great news Jeff !   ;D So glad that the recovery is not as hard this time.... keep us posted.
Marg
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Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !
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