Author Topic: "Chateau Deaf" 6 months later  (Read 3968 times)

Jeff

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"Chateau Deaf" 6 months later
« on: October 18, 2007, 03:30:03 pm »
Hello,
Today marks the 6 month anniversary since my AN surgery. This has given me pause to reflect.

First, a disclaimer: My experience was rare, so if you are reading about it before you have surgery, please know that the problems that I had rarely occur. For most, they do not occur. In fact, I had two AN surgeries prior to April and had relatively few problems. You can read about some of them on my original "Chateau Deaf" thread if you are interested.

Since my surgery I found out that the doctors needed to resect a portion of my cerebellum because it began swelling during the surgery. I have also learned that this is the correct action to take because uncontrolled swelling of the cerebellum can cause the brainstem to herniate, which results in death. This resection caused me great difficulty.

When I finally awakened from my sedation, I was unable to move my left side at all. I also had trouble controlling my right side. I was unable to pick up a fork at one point. I also had some cognitive problems. At one point my wife asked me who the president of the US was, and I could not tell her. I also couldn't tell her who d*** Cheney was.

Thankfully, I have gotten much better through much physical and occupational therapy. I am back to work full-time. And, I do most of the things that I used to do. I still have balance and coordination problems, bu they are improving. My facial nerve snapped during surgery and the doctors only patched it back together using surgical adhesive, so I have complete paralysis. I have regained most of the feeling in my face, but not inside my mouth. I guess that I'll get whatever I get.

Being deaf is tough, but not insurmountable. I am fortunate that I can read lips somewhat.

I guess that I would like to share that you can make it when you are facing tough times. I appreciate the encouragement that I have received her. I wish all of you the best.

Jeff
NF2
multiple AN surgeries
last surgery June 08

4cm in Pacific Northwest

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Re: "Chateau Deaf" 6 months later
« Reply #1 on: October 18, 2007, 05:33:14 pm »
Jeff,

I think you have taken a remarkable positive attitude and have kept moving forward.

I can’t see your face and you can’t see mine (however I am smiling at you with one half of my face) and know that I am winking at you with my one functioning eyelid. I am 8 weeks post op here and I have a very long way to go still…

I only have to read what you have written in your posts and in e-mail, never met you in person- however I know you to be a beautiful person on the inside. With all that you have gone through I still cannot believe you took the time to write to a petrified patient (aka me) so soon after you ordeal.

I think you have an amazing “vocational rehabilitation� story that needs to be written by you and read by others. I personally have found you to be very inspiring.

I just finished reading Christy Brown’s “autobiography� - book “My Left Foot�
http://www.amazon.com/My-Left-Foot-Christy-Brown/dp/074930460X

A different perspective than the Hollywood “biography� movie version
http://www.imdb.com/title/tt0097937/

I think his own written words to be much more powerful than the “Hollywoodized� story.

Christy Brown was a man who learned to write later as an adult and shared his story. He paved the way for so many other cerebral palsy patients by being able to express himself through written words (and paintings). He created understanding in the "fully abled bodied"  population for people with disabilities.

My Left Foot has been a required reading book for  8th & 9th students in BC Canada. There is much respect and appreciation there for people with disabilities. Look at the ELECTED Vancouver BC mayor, Sam Sulliven who accepted the Olympic flag as that city is hosting the games

The Sam Sulliven story – in brief
http://en.wikipedia.org/wiki/Sam_Sullivan

His official mayor bio
http://www.city.vancouver.bc.ca/ctyclerk/councillors/sullivan/#bio


Jeff you have thoughts and ideas that many of us here will so respect and appreciate. I implore you to write. I really think you have it in you…

This is a great starting point

“Being deaf is tough, but not insurmountable. I am fortunate that I can read lips somewhat….�

I am rooting for you Jeff- “Keep moving Forward�…. keep writing.

Cheer,

4
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!

jerseygirl

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Re: "Chateau Deaf" 6 months later
« Reply #2 on: October 18, 2007, 07:22:04 pm »
Jeff,

Best of luck to you in your recovery! Human bodies heal and improve over time. You trully are an inspiration!

            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.

4cm in Pacific Northwest

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Re: "Chateau Deaf" 6 months later
« Reply #3 on: October 22, 2007, 12:17:46 pm »
If you are new reading Jeff’s post I suggest you follow this amazing man’s story here
http://anausa.org/forum/index.php?topic=5313.msg48000#msg48000

Jeff is most certainly my personal hero and inspiration on this AN journey ship. Yes Eve -not only does the body heal … but Jeff proves to us…so does the mind and spirit.

God bless you Jeff – for sharing your journey with us petrified :-\ patients. You certainly have provided me with strength and inspiration to “keep moving forward!�

Enormous HUG

4


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!

HeadCase2

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Re: "Chateau Deaf" 6 months later
« Reply #4 on: October 22, 2007, 01:19:25 pm »
Jeff,
  It's really good to hear that things are improving for you.  I know it's been a long road.  Here's to your contining recovery.
Regards,
 Rob
1.5 X 1.0 cm AN- left side
Retrosigmoid 2/9/06
Duke Univ. Hospital

GrogMeister of the PBW

 


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