Author Topic: I miss my smile  (Read 2894 times)

vickieastwood

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I miss my smile
« on: June 04, 2017, 07:15:50 pm »
Surgery to remove my 4.2 cm AN was on March 31st 2015. The surgeon said it was very complicated because it was embedded in my brain stem. I was in intensive care, the hospital, then a rehab hospital for two more weeks. There I had to relearn how to walk and talk and I could only have soft foods. I've come a long way since then and have been able to overcome all of that and returned to a normal life. I am grateful for this, I feel so fortunate to be here and have felt such love and support from my family and friends. In January I discovered this ANA forum. It has been eye-opening to discover there are others like me. Because of you, I have decided that this year I want to work on improving my quality of life. Last week I got cross hearing aids. I wear a "microphone " in my deaf ear that sends the sound to my good ear. I didn't realize all I wasn't hearing! I have an appointment this month to find out about scleral lenses. I'm hoping they will work for me. I've had to use eye gel constantly and have blurred vision because of it. And next week I am flying to Johns Hopkins to meet Dr. Byrne to look into facial reanimation. Thank you for helping to give me the courage to take these steps! Hopefully someday I'll be able to share that my smile is back.

Patti

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Re: I miss my smile
« Reply #1 on: June 05, 2017, 04:13:48 am »
I've gone through all the same.  I never bothered with hearing aid or scleral lens.  Let me know how it goes! I might consider the scleral lens.  My eye is a constant issue.
4 cm AN removed 12/2000
subsequent brain swelling
removal of part of cerebellum
face, scalp,tongue numbness and partial paralysis
no corneal sensation and no tears-frequent eye issues
cognitive issues
Regrowth (3.1 x ..86 cm) treated by SRS on November 6, 2015

vickieastwood

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Re: I miss my smile
« Reply #2 on: June 05, 2017, 05:17:15 pm »
Hi Patti,

Sounds like we've been through similar experiences. I'll let you know once I get my scleral lenses. I've just been glad to be here, but I feel like I'm operating at about 60%. Seeing and hearing kinda like I've got my eyes open under water. Reading about others in the forum brought me some hope that maybe life could improve. You deserve to feel better about yourself, too! Hang in there,

Kerrybr92

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Re: I miss my smile
« Reply #3 on: June 05, 2017, 05:44:21 pm »
I have worn a scleral lens for almost five years.  I lived one year with goop in my eye all the time and just couldn't take it.  I would recommend anyone having the eye issues we have to see if a scleral lens is right for them.
Right AN 2.5cm
11/11/11 retrosigmoid surgery Drs. Barker and Mckenna MGH 16 hours
Right SSD, Right sclerel lens from Boston Foundation for Sight
Some facial weakness

vickieastwood

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Re: I miss my smile
« Reply #4 on: June 13, 2017, 05:22:11 pm »
Thanks Kerry I can't wait to try the lenses!

vickieastwood

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Re: I miss my smile
« Reply #5 on: June 13, 2017, 05:41:03 pm »
Dr. Byrne recommended the gracilis flap surgery for me and was very encouraging. So surgery is scheduled for August 8th. Anybody had this surgery? I am really hoping that once the swelling goes down I will have a more balanced resting face. Any tips and tricks I should know? Thanks for anything you can share!

vickieastwood

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Re: I miss my smile
« Reply #6 on: August 20, 2017, 12:39:04 pm »
I had the gracilis flap surgery on August 8th in Baltimore. We are back home and things are returning to normal. The swelling in my face is slowly,slowly going down. The bruising is receding and my mouth is looking ever so slightly straighter. My smile is still downward sloping but that should improve over the next six months especially when the nerve is reanimated. Even now, I feel like this surgery has been a success. Little things have improved like eating from a spoon without dribbling, spitting toothpaste straight instead of down my chin. But I believe the biggest success will be seen when I return to work and conference calls. Before, I found myself holding my cheek in order to assist with my speech. I haven't noticed doing that since being home and feel like my cheek and speech is supported better. Can't wait for swelling to be gone to see my new normal and I'm feeling so hopeful about the future.  I'll be returning to work September 5th and feel like I'll be ready to hit the ground running!

alabamajane

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Re: I miss my smile
« Reply #7 on: August 20, 2017, 02:27:43 pm »
Congrats! It's good to hear your report and I'm sure it will help others.

I was told  of that surgery with Dr Tessa Hadlock in Boston I believe it is. But never looked into it. I did get good results from my 12/7 graft though. Not a satisfactory smile but good resting tone. And I don't have much problem with eye issues.

But here's to hoping for much improvement in the near future for you!!
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

vickieastwood

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Re: I miss my smile
« Reply #8 on: August 23, 2017, 02:38:10 pm »
Thanks Jane!

Every day I am seeing improvements. It will just be icing on the cake when I start to get movement. When considering the surgery it was hard to wrap my head around it, but now that I am on the other side, I am thrilled- and I know I've still got a ways to go with my recovery.  I can't say enough good about Dr. Byrne, his staff and Johns Hopkins. 

I'll post an update again when I return to work in a couple of weeks.  My family is amazed by the difference surgery made, but it will be interesting to hear what folks I work with have to say.

Vicki

tugnutt

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Re: I miss my smile
« Reply #9 on: September 12, 2017, 12:44:07 pm »
Vicki and Jane - I had my gracilis flap surgery January 9, 2017 by Dr Boahene at Johns Hopkins.  So happy with the results! Yes, it has taken some time (about 3 months) for the function to return but I have a sizable smile, almost as good as pre-AN, am doing better with the dribbling from a glass, and - I am hopeful this will happen for you - SO much better diction.  In fact, the side with the gracilis flap is far stronger than the other side. 
I also have a scleral lens, and have come a long way with it -learning how to take care of it and insert it, and what to use at night so I didn't have a greasy smear over the lens (I use the gel overnight, it's a dream come true).  It was great to hear from others who have had the surgery and the lens, it has vastly improved my life. 

alabamajane

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Re: I miss my smile
« Reply #10 on: September 12, 2017, 02:19:28 pm »
Tugnutt,,
CONGRATS! I am so glad to hear that you are so happy with the results of your last surgery,,, that truly is wonderful. I have heard of Dr Boahene and his expertise.

I would love to have my smile back also but just can't fathom going so far for surgery! Seems like such a daunting adventure  ::),,,,, if there were a Dr around closer with that type experience,, I am sure I would have it done,, well,,,, almost sure,, I am still uneasy about another fairly serious surgery  :-\,,, I'm chicken,,, and not as young as I once was, ,,,haha,,,

But I'm so happy for you two!! Your smile is really so important in this journey,,,,,

Best of luck,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

tugnutt

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Re: I miss my smile
« Reply #11 on: September 15, 2017, 07:22:39 am »
AL Jane - I totally understand your concerns!  It was a big step, but now it's behind me.  I'm pretty certain I would do it again.  One of the reasons I steeled myself and did it, is that Dr Boahene said it would be harder to get satisfactory results if I waited longer - it had been 15 months since the surgery.  What with that pressure to decide, my awesome husband's support (he is my therapist, advocate, chauffeur, and shoulder to cry on), and desire to smile again, I was convinced.

I know that we each have our own road to recovery from AN and the surgery, and I do not dismiss anyone making their own best choices for themselves. To me, it's amazing that we have these options!

Thank you for your congratulations - I owe all of my thanks to the good doctor and my husband.   

vickieastwood

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Re: I miss my smile
« Reply #12 on: December 04, 2017, 07:58:51 pm »
Hi everyone,

It's been nearly four months since my gracilis flap surgery and I wanted to give you an update. Swelling has gone down although I still have fullness in my cheek. My speech has improved and I don't need to hold my cheek anymore on conference calls, such a relief! No movement yet that I can feel, but a couple of months ago I started having tingling in my cheek. I can literally feel the nerves connecting. I've been told that movement has been seen in my cheek and that my eye looks better. This week I realized I was blowing on my soup- something I haven't been able to do in a long time. No smiles yet, but starting to be able to do the pucker type movements with less pull to the other side. Boy is it hard to be patient, I can't wait to feel a smile again.

Another update - I've been wearing my scleral lenses for about three months now and I can't express how wonderful they are. I don't need the goop in my eye anymore and the dry eye pain is gone. Between the amniotic membrane and the scleral lenses, the vision in my left eye had improved from legally blind from dry eye corneal damage to 20/30 vision. It just feels like a miracle and I'm so grateful for hearing about them here on this forum.

I'll post more when movement returns. Thanks to everyone for your encouragement!

Vicki

alabamajane

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Re: I miss my smile
« Reply #13 on: December 05, 2017, 05:12:07 pm »
Congrats Vickie!
Really good news and I’m sure it’s just a matter of time before you have that “Colgate smile” again!  ;)

Patience is hard so many times along this journey,,,,, hang in there,, it won’t be long and you’ll be posting about that beautiful smile that on it’s way!!!

Peace and Happy Holidays,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

vickieastwood

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Re: I miss my smile
« Reply #14 on: December 07, 2017, 06:34:39 pm »
Thanks Alabamajane! You were so right, yesterday I noticed my first movement and today I can see ever so slightly more movement! So excited now to find a facial therapist to teach me what exercises to do!

Vicki