ANA Discussion Forum
General Category => AN Issues => Topic started by: chrissmom on March 11, 2007, 01:09:03 pm
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Good news all...
We see movement ! Chris has demonstrated his ability to "whistle" and we saw movement in the facial muscles. It's slight to be sure but it is there. He had the anastomosis 4 months ago.
He went fishing today. I guess your encouragement helped. We finally have a nice day here in Pennsylvania so he went fishing with a friend. He hasn't been fishing for a long time.
He is working part-time and he plans to go to college in the fall. Congratulations to Batty on her return to school !
He was recently denied SSD because they feel that his illness will not last a year. Well, we are appealing that ruling. I kept a diary last year ( as per advice of Raydean). I have everything listed month by month. It details his constant struggles with his newly acquired hearing loss, the constant frustration and stress of the altered levels of hearing and balance, his self-consciousness about his facial paralysis. He is in recovery and I want them to know how he struggles with it.
I'm thinking about writing a story for Readers Digest when this is all over.
I keep telling him to post his picture so you can all see how gorgeous he is... what a mom, huh?
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Good news all...
We see movement ! Chris has demonstrated his ability to "whistle" and we saw movement in the facial muscles. It's slight to be sure but it is there. He had the anastomosis 4 months ago.
He went fishing today. I guess your encouragement helped. We finally have a nice day here in Pennsylvania so he went fishing with a friend. He hasn't been fishing for a long time.
He is working part-time and he plans to go to college in the fall. Congratulations to Batty on her return to school !
He was recently denied SSD because they feel that his illness will not last a year. Well, we are appealing that ruling. I kept a diary last year ( as per advice of Raydean). I have everything listed month by month. It details his constant struggles with his newly acquired hearing loss, the constant frustration and stress of the altered levels of hearing and balance, his self-consciousness about his facial paralysis. He is in recovery and I want them to know how he struggles with it.
I'm thinking about writing a story for Readers Digest when this is all over.
I keep telling him to post his picture so you can all see how gorgeous he is... what a mom, huh?
"What a mom" is right! You've been a super-mom all through this ordeal with your son. Brave and resilient seems to be a family characteristic. :)
I'm so pleased to see that Chris is showing signs of facial movement. I trust that movement will increase over time. The fishing expedition is a very good idea. I hope Chris brings back a creel full of fish tonight. :)
The denial from Social Security is common on the first attempt, as many here can attest. Your appeal seems justified. Best of luck with it, as your son certainly deserves what others sometimes receive for far less of a loss.
It sounds as if Chris is doing fairly well, considering the size of the tumor removed and the complications he had to endure. Be sure he knows that we all congratulate him and wish him the best as he struggles toward a full recovery.
Jim
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YEEEAAAAHHHHHH !!!!!!!!!
You don't know what this does for my spirits !!!!!
I am soooo happy for him, & you too mom !!!!
WOW !!! First I read how well Denise is doing, now Chris.
I'm getting less scared of the 12/7 jump surgery by the minute !!
Great news, take care, Nancy
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Great news! It's always good to hear that faces are moving. Hope Chris has fun fishing. It does feel like spring is in the air today.
Jean
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Right ON! we all need to hear and read about good things that happen! Way to go Chris- and Kudos to Mom- Suma Cum Laude- Annie
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Chrismom ,I am so glad for him that he went fishing.. I am in Missouri and it is to cold to go to the creek. Ha ha , Yes we should see what a good luckin guy you have .. Linda
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Chrismom
My 25 yr old daughter had her tumor removed Jan 3rd of this year. Her face is still paralyzed and she is having eye troubles and trouble swallowing, well she only swallows thickened apple juice. When did Chris have his surgery? Was his tumor a large one? Does he have trouble swallowing?
Sorry for all the questions but I know everyone progresses at their own speed but I like to read the success stories here so I can encourage my daughter.
Thanks for any answers you can share with me.
Maureen
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Great news about Chris! Also, keep appealing the SSDI claim. Put it in the hands of a lawyer if need be. It will eventually go through. It just takes time.
Paul
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great news about chris! i am from pa., too! i think i had my surgery a little after chris and read every word of his story!
MAUREEN -- i am 23 - not too far from your daughter's age. i had surgery 7 months ago for a large tumor...i promise it gets better! i'm not back to 'normal' yet, but working hard! it feels like a never-ending battle. feel free to drop me a line -- or your daughter! superrmaren@hotmail.com
xox
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Maureen,
I certainly understand what you are going thru. Yes, Christopher had all those things. The swallowing problems were mostly while he was in the hospital. About 3 weeks after the surgery he was able to eat thicker foods. The water was a problem going down because it is fast and he couldn't feel it so they started him with thicker liquids and water-based liquids came last. He had swallowing tests done daily. He gradually came back from that problem.
The eye problem goes with the facial paralysis. While in the hospital, several days after the second surgery to get the tumor, they took Chris to the ophthamologist and a gold weight was placed in his eyelid. Even though he had muscle-tone at the time, the doctor knew he would need it and sure enough he did. The gold weight closes the eye, you can't see it at all. It will improve the appearance of the eye. I'm glad he had it done.
The facial paralysis: 3 months after the tumor surgery, the doctor did a jump graft. He took a very small piece of the hypoglossal nerve and connected it to the facial nerve. This is expected to reanimate the face. After 4 months, we are beginning to see results.
His tumor was 5.3 cm- a monster.
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Yay, Chris!!!!! Good news. We like that! ;D ;D
Sue in Vancouver
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chris'smom and chris,
congrats, that is too cool...
my fishing buddies and i used to communicate with each other by whistling more so than talking. but now i cant whstle..
it is encouraging to know that i might be able to again someday...
good luck and God bless you both
tony
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Chrismom!
I am so happy for Chris!!! Please let him know.
This is very exciting, and it will only get better. I am very very excited for him.
Denise
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Hey Denise,
What's the status of your reanimation? Chris is now going to start speech therapy because the doctor doesn't want synkinesis (when muscles move the wrong way and you get the wrong expressions) to occur.
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Hey Chrissmom,
In one of the threads, you had talked about starkey destiny's transcranial CIC hearing aid. Can you tell me how to contact those people?
Robin
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http://www.starkeynfusion.com/destiny/index.html
Check this out. Ask for the TCROS version (transcranial cros) of the Destiny 1200.
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Chrismom,
I am doing well. I am having more movement with my tongue and have been told when I talk the left side of my mouth moves a little now. I am definitely feeling more confident. My doctor did not discuss any speech therapy or anything like that. I will have to check and see if i need anything like that. I am feeling better about my appearance, and am a little more eager to get out in the public eye.
I really am happy to hear Chris is doing good, wish I could whisle.
Denise
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Denise,
Chris just received a script today for facial nerve rehab. His doctor is sending him to a therapist that specializes in facial nerve rehab. in Pittsburgh.
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Thanks Chrissmom.
Robin