Author Topic: Just had the 12/7 - my experience  (Read 5348 times)

marcdi

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Just had the 12/7 - my experience
« on: September 03, 2015, 07:13:32 am »
Hello everyone!

I'm a whole 48 hours post my 12/7 graft surgery and back home. Thought i'd share my experience so far in the hopes it helps someone.

1. The surgery is nowhere near as scary as the Acoustic Neuroma surgery. It took about 2 hours for me, and I skipped the ICU stage and instead got allocated to High Care for the night. Was in a bit of pain but totally manageable with the morphine pump (my new best mate).

I expected not being able to talk properly post surgery - I was expecting terrible slurring and total unintelligibility. Although i'm certainly nowhere near as clear as I was prior to the AN surgery, I can honestly say I'm not to bleak with my ability to talk. People understand me just fine. My only issue really is that my tongue gets in the way now when I talk and I occasionally bite it.

Eating: another thing I was expecting a disaster with but it's hardly that bad! I won't be rushing off to have a steak anytime soon but I can eat small, manageable mouthfuls on my good side. The bad side is now a glorified food store unit - it's like a pelican's beak!

Anyway, I hope this helps someone out there. I certainly didn't want this op but now that i've had it, I think I made it out to be much worse than it really is!

I'd be interested in your thoughts on speech therapy?

Cheers,

Marc

alabamajane

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Re: Just had the 12/7 - my experience
« Reply #1 on: September 03, 2015, 08:17:05 am »
Hi Marc,
Congrats on a successful 12/7 graft. I'm glad it was not as bad as anticipated. I had mine 4 days after AN surgery while still in ICU so did not know much about that one,,,,,but as you say,, relatively speaking,, it's nothing to stress over...its surgery but not near as difficult.

I agree with your assessment of the aftermath also,,,, talking is not near what it was pre-AN surgery but I'm not sure if it is because of the tongue entirely or the lack of movement of the corner of the mouth. I like to say I talk like a pirate  :-\,,, one side of my mouth doesn't open completely so it can be difficult to understand me if I don't slow down and "think" about talking purposefully.  If that makes sense,,, I did not have speech therapy so can't speak to that. It may help you after you heal some.

Eating is really the biggest challenge. As you say,, the tongue is really useless now except to move the food to the good side of the mouth,,, I could not even put food on bad side as I would choke to easily if it started down throat. I'm not sure if I had some early issues
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

alabamajane

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Re: Just had the 12/7 - my experience
« Reply #2 on: September 03, 2015, 01:39:13 pm »
Ok ,, so seems my last post did not post correctly for some reason,,,,as I was saying,,,,,,

i mainly use my tongue now to keep food on good side so as not to choke trying to swallow on bad side,, your tongue will atrophy some on that side so it will not move as freely/completely toward affected side as it did before. It will improve with time and healing. I am 4 years out so nerve has regenerated nicely and I have much more movement than at first. Face has nice tone and good movement. I learned to eat much more slowly , chew slowly and carefully, and not eat sandwiches/burgers ,,,......very messy,,,,,salads are another challenge, although it is improved enough that I have gained back most of the weight I lost at first on " the 12/7 diet" ,,,,,  ::)

Good luck and hang in there and you will see improvements slowly but surely!!

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

OneHourVideo

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Re: Just had the 12/7 - my experience
« Reply #3 on: October 22, 2015, 09:19:36 pm »
I really appreciate both of your post.

I will be having the 7/12 surgery on November 19 and wanted to see how your recover is doing. I teach at the local college as a hobby and I have been concerned about my speech becoming more difficult understand. After the AN surgery and the paralysis it was more difficult to communicate as clearly prior to the surgery. I was wondering how your recovery is going and specifically speech. I am a commercial real estate appraiser and was wondering how quickly you think I could start back work from home.

Thank you guys in advance for your posts.

Chris
Diagnosed February 12, 2015 with 2.5 cm AN at 49 years of age.  Had hearing loss and ringing in my ears as symptoms for about 15 years. Had surgery March 16, 2015. Lost my hearing in my left ear and facial paralysis on my left side and will be having a 7-12 anastomosis soon.

marcdi

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Re: Just had the 12/7 - my experience
« Reply #4 on: October 23, 2015, 11:21:41 am »
Hi Chris

I understand the concern, my job involves a lot of talking and I was super stressed about my speech following from the surgery.

I had the 12/7 surgery on 1 Sept this year..

My speech has been impacted but truthfully, it isn't bad at all. Nobody I work with seems to notice any difference between my speech pre and post 12/7 surgery. I feel like I speak with a bit of a slur and certain words are a little more difficult than others but i get through the day at work just fine. Mornings are fine but after a day at work, my tongue gets tired and I slur a little more.

Immediately after the surgery, my tongue did pull to the right side (my affected side) but it is slowly returning to normal although the one side of my tongue seems to be atrophying a little.

Eating has gotten progressively better. I eat slower but apart from that, all is fine.

My neurosurgeon reckons I will only see facial movement after 6 months but judging from the comments on this blog, I think it's reasonable to expect an improvement in tone around the 4 month mark.

Regarding being back at work, I went back to work 3 weeks after my 12/7 op and coped just fine.

I am seeing a speech therapist who has given me a few tongue exercises, hardly rocket science exercises but it apparently can help pronouncing the difficult words a bit more clearly.

I hope this helps. If you aren't convinced that you'll sound fine, I'm up for a FaceTime call to allay your fears!!

Cheers,

Marc

OneHourVideo

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Re: Just had the 12/7 - my experience
« Reply #5 on: October 25, 2015, 09:24:20 pm »
Hi Marcdi,

Thank you for your response.

Tumor was totally removed (except for a small portion near the brain-stem, it appears!), and I had no other health complications whatsoever, but my facial palsy has persisted for 8 months. So, I had an EMG on (8/11/2015) to determine if I had any facial nerve function and it appears not. My neurosurgeon said that my facial nerve wasn't cut, just stretched out to the point that recover is highly unlikely. He was not able to locate the facial nerve during the surgery. He tried to get it to respond with probes during the surgery, but with no success.

That is why I was planning on having the 7-12 anastomosis on November 19. However, today I noticed some facial movement in my cheek and it has improved slightly over the day. Based on my previous EMG results, I have not attempted to move my facial muscles and it was a shook to me that I was able to today. It is not a lot of movement, but I can feel it and my family said they can see the movement.

I am wondering if waiting to have the 12/7 might be wise and if another EMG is reasonable. It has been 223 days since my AN surgery.

Chris




Diagnosed February 12, 2015 with 2.5 cm AN at 49 years of age.  Had hearing loss and ringing in my ears as symptoms for about 15 years. Had surgery March 16, 2015. Lost my hearing in my left ear and facial paralysis on my left side and will be having a 7-12 anastomosis soon.

alabamajane

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Re: Just had the 12/7 - my experience
« Reply #6 on: October 26, 2015, 08:01:51 am »
Chris,
Just my opinion,, but I think you should be trying , gently, to move your facial muscles. "Remind" them what they should do. Gentle massage upward and outward, clench your teeth to grin, etc.
It can take the muscles at least 6 mo to heal. But I'm not a Dr so I definitely think you should discuss the slight movement with him. It is very encouraging that you see some movement though.

Whether or not you have the 12/7 graft should be determined after discussing it with the Dr. I had my nerve severed so I had no choice but if it was not severed,, you may get movement back with some time. If it IS severed,, you want to save the nerve before it dies,, but yours may revive itself,,,,,

Let us know,,,,
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

OneHourVideo

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Re: Just had the 12/7 - my experience
« Reply #7 on: November 22, 2015, 12:19:32 am »
Hey Guys,

I want to give an update that is very encouraging. I was scheduled for 7/12 on November 20. But, because my facial nerve is recovering we have cancelled the surgery and waiting to see how the recovery goes. Its been 3 weeks since I started having some twitching on my affected side and it has been improving each week. I can smile, but when I speak it still is noticeable. However, it is definitely recovering and the speed of recovery is truly unexpected. It was approximately 6-7 months after surgery that the twitching began and weekly I can see improvements. My surgeon was more surprised than I was because he said it did not appear the nerve was intact after surgery. I hope this is encouraging to some of you that are concerned your recovery is not moving in the right direction. 

Good luck and I will keep you updated.

Chris   
Diagnosed February 12, 2015 with 2.5 cm AN at 49 years of age.  Had hearing loss and ringing in my ears as symptoms for about 15 years. Had surgery March 16, 2015. Lost my hearing in my left ear and facial paralysis on my left side and will be having a 7-12 anastomosis soon.

alabamajane

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Re: Just had the 12/7 - my experience
« Reply #8 on: November 22, 2015, 07:50:34 pm »
Great news Chris!!
I'm very happy for you,,, see patience is so very important for nerve healing,, it's hard at first but so very necessary. Especially when Dr says nerve was not severed there is always hope.

I wish you continued healing and movement!! A lot to be thankful for this year!

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