Author Topic: Dr. Neely said "Substantial Improvement"  (Read 6803 times)

saralynn143

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Dr. Neely said "Substantial Improvement"
« on: November 25, 2008, 08:57:32 pm »
I had my (roughly) 6-month follow-up today at the Facial Nerve Center at Washington University in St. Louis. Dr. Neely put me through some facial gyrations and punched the numbers in his computer. The magic number is now 46, up from 12 in July.

I have a "great snarl" (wrinkling nose). He also said my cheek is trying to move, it just isn't quite there yet. He was pleased with how my eye weight looks. I have movement at the corner of my lip and in my chin as well.

That moves me from a V to a IV on the House-Brackmann scale, although according to Dr. Neely, that scale is terrible. I just tonight figured out that he is the Neely of the Neely-Cheung Rapid Grading System (see http://www.entusa.com/bells_palsy.htm#The%20Neely%20and%20Cheung%20Rapid%20Grading%20System), which is what I assume I scored 46 on.

I told Dr. Neely that I had found some very inspiring posts on this site that showed people with beautiful smiles even though it may have taken three years. He reminded me that there are many things we can do if Mother Nature doesn't take care of things to my liking. I told him that I thought Mother Nature was going to do the job, and he said that he does too.

I see him again in March. Hope to have just as big a jump on the scale then!

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

MAlegant

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Re: Dr. Neely said "Substantial Improvement"
« Reply #1 on: November 25, 2008, 10:16:37 pm »
That sounds like a great doctor's visit.  Your attitude is excellent. I hope your recovery follows suit.
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kaybo

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Re: Dr. Neely said "Substantial Improvement"
« Reply #2 on: November 25, 2008, 11:19:14 pm »
Sara~
So glad you had a good visit!  I'm sure the improvement will be just as good or even BETTER next time!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

wendysig

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Re: Dr. Neely said "Substantial Improvement"
« Reply #3 on: November 26, 2008, 06:35:58 am »
Hi Sara,
Congratulations!  Great news from your doc just in time for Thanksgiving.   It sounds like you are finally on the road to a great recovery.

Best wishes,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

saralynn143

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Re: Dr. Neely said "Substantial Improvement"
« Reply #4 on: November 26, 2008, 08:51:35 am »
I forgot to put in that my word-of-the-day for yesterday is "paresis." I asked Dr. Neely the difference between paresis and paralysis and he said that paresis is partial paralysis.

I have changed my signature line accordingly. I am now a "facial paresis patient." I don't know why that makes me feel better, but it does.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

MKLady

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Re: Dr. Neely said "Substantial Improvement"
« Reply #5 on: November 26, 2008, 09:24:37 am »
Sara,

That is fantastic news!  I also like that you are feeding yourself positive words like paresis instead of paralysis.  I hope that you and your family have a wonderful Thanksgiving.  Now you have more to celebrate!

Susan
Translab 4/10/2008; 1.3 cm; total facial paralysis left side.

hruss

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Re: Dr. Neely said "Substantial Improvement"
« Reply #6 on: November 26, 2008, 04:20:39 pm »
GREAT Sara!!

keep jumping!!

Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

calimama

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Re: Dr. Neely said "Substantial Improvement"
« Reply #7 on: November 30, 2008, 06:55:50 am »
Sara,

What a great story... very happy for you... 46 and counting... getting there with the gracious help of Mother Nature.

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

mimoore

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Re: Dr. Neely said "Substantial Improvement"
« Reply #8 on: November 30, 2008, 09:42:08 am »
YAHHOOOOOO SARA!!!!!!!!
Sara I like your new word paresis, I have been using it all day. My husband rolled his eyes  ::) and laughed. I said "Hey it's the small things in life that make a difference". Like the tiny movement in my cheek and corner of my mouth, life is good!

I am so happy for you Sara.

Michelle  ;D

I tried to do the Neely test but couldn't down load it... any tips?

« Last Edit: November 30, 2008, 09:45:15 am by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

leapyrtwins

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Re: Dr. Neely said "Substantial Improvement"
« Reply #9 on: November 30, 2008, 10:33:40 am »
Excellent news, Sara  ;D

From what I've learned on this forum, facial nerves can take a long time to regenerate, but it sounds like you're making definite progress.

I know it's probably very hard, but be patient.

Keep the faith,

Jan

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

saralynn143

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Re: Dr. Neely said "Substantial Improvement"
« Reply #10 on: November 30, 2008, 11:09:20 am »
Michelle, I have a Mac and did not even try to download it. (Besides, I am fortunate enough to see Dr. Neely himself!) When my husband the computer guru has a minute I'll ask his advice.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

mimoore

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Re: Dr. Neely said "Substantial Improvement"
« Reply #11 on: November 30, 2008, 05:29:26 pm »
Thanks Sara... I would like to take the test.
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

LADavid

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Re: Dr. Neely said "Substantial Improvement"
« Reply #12 on: November 30, 2008, 07:47:50 pm »
Great news Sara.  On a day to day basis we tend not to see the improvement.  But at 6 months -- wow!  Just think where you'll be 6 months from now.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

saralynn143

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Re: Dr. Neely said "Substantial Improvement"
« Reply #13 on: December 01, 2008, 08:44:07 am »
Michelle, Phil was able to download the program with no problem. However, when he opened it he said he did not know what it was asking for. It was designed for use by doctors, not patients. You might ask your doctor about using it next time you see him, or send the link ahead of time.

Sara

MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

mimoore

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Re: Dr. Neely said "Substantial Improvement"
« Reply #14 on: December 01, 2008, 06:49:33 pm »
Thank you Sara & Phil!
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.