Author Topic: Need peeps advice!  (Read 6421 times)

tugnutt

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Need peeps advice!
« on: November 10, 2016, 12:29:16 pm »
I am seeing a surgeon next week (Dr. Boahene at Johns Hopkins in Baltimore) about options for my facial paralysis.  I haven't had appreciable movement since my surgery, October 4 2015. The left side is just stuck, so I am hoping to hear of some alternatives to get my smile back!  I know many of you have had surgical intervention - what should I be asking?  Besides what can you do for me, what are the risks, and how long would it take to heal, what else do I need to know? 
I am so thankful for this group - like many have said, I didn't find it right away, and felt I was the only one with problems.  Just knowing y'all are here is very comforting. 

Amz569

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Re: Need peeps advice!
« Reply #1 on: November 21, 2016, 08:13:32 am »
How did it go? I live in Canada and just had a consult last week too. First off I was told I have no nerve activity to my face. This was a shock as my Dr told me there was. I think I had an EMG but 2 different methods. Then they outlined the 3 options
1) facial sling- it would raise the right side of the face slightly but in a static position so I don't gain any movement
2) take a nerve from my leg and put it into my face. I couldn't voluntarily smile but rather activate a smile by biting my back jaw together and making a smie
3) 2 part surgery- they take a nerve from my calf and put it in my face, let it grow for 8 months and then take a nerve from my thigh and graft it to the other in my face.
All had risks, pros and cons. They are recommending #3 for me based on age (34)
I had many questions and have thought of more since.
I'm interested in what you found out

v357139

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Re: Need peeps advice!
« Reply #2 on: November 21, 2016, 07:47:50 pm »
Hello Tugnutt.  I am sorry for your issues.  You did not say so I will ask.  Have you tried any facial therapy?  Jackie Diehls is supposed to be the best around.  Perhaps she may also have some insights that the doctors do not have.  Best regards, and best of luck.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

tugnutt

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Re: Need peeps advice!
« Reply #3 on: November 22, 2016, 06:28:46 pm »
AMZ569 - My doctor focused on your second alternative for me, but would use two parts of one nerve to enervate muscles near my mouth and eye.  He suggested it would take between 3 - 4 months for me to have a response.  He would do a gracilis graft (move the muscle from my inner thigh) to help support the mouth muscle, which he thinks is less likely to respond because I waited so long. 

I am excited to give it a try!  I can live with the facial paralysis, but would be lots happier with better use of my mouth and eye. What other questions do you have?  I am going next week, so can ask soon. 

v357139 - I did very little facial therapy, all my doctors - rightly or not - said that unless the nerve reacted, my muscles couldn't really respond.  I did manipulate my face often, and had the tingling sensation in my lips (that left me so hopeful!), but it hasn't resulted in anything real.  I agree, perhaps I should have pursued facial therapy - but I can't unring that bell!  It's a year later and the muscles are losing tone, so I believe i need to take aggressive action.  But tell me your story - what worked for you? And thank you for responding!

v357139

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Re: Need peeps advice!
« Reply #4 on: November 22, 2016, 08:35:26 pm »
I did not have any facial issues.  But there is a guy in our group who had facial issues.  He used Jackie Diehls with great results.  Let me know if you'd like to speak to him.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

caryawilson

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Re: Need peeps advice!
« Reply #5 on: November 27, 2016, 05:49:39 pm »
Dr. Boahena is my facial reanimation specialist, and he is amazing.  I had my facial nerve removed during surgery, so nerve grafts were started within a few weeks of my AN surgery.  You will have a more complicated surgery since the muscles have started to atrophy.  Dr. Boahena is crazy smart and he will explain your options.  Due to the length of time, I doubt my reanimation strategies will work for you.  Please let us know.

As for risks, there are always potential complications with surgery, but since I had a complete facial nerve resection, I really had nothing to lose.  If the nerve grafts worked.. great, if not, nothing to lose.  For me, I don't have much of a smile, but the masseter to facial nerve transfer has brought some facial muscle definition, and I can smile if I grit my teeth.  The sureal cross facial nerve graft did NOT work.

How is your eye? I also needed to have a lower eye lid tightening, and I went to James McCulley, also at Hopkins.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

Kathleen_Mc

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Re: Need peeps advice!
« Reply #6 on: November 29, 2016, 02:57:53 am »
Hi
First I had a 7-12 anastamosis done.....I can move my face some into a smile by moving my tongue....this was done 3 months after the resection by my neurosergoen.
On to a Plastic's Guy
Second  I had the Facia sling....this just helps the sagging look, some help for the eye in that the lower lid wasn't pulled down as much.
Third was muscle transplant (from my thigh into the cheek)
Forth was nerve from my leg into the face, two part surgery....put it in there, let it grow then attach on the "bad side"
Fifth was having the nerve that pulls lower lip down on the good side cut so the good side wouldn't pull down as far and make the smile more symmetrical
I was the first patient of my doctor to go through with everything he recommended.....it helped and was worth it I think
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

tugnutt

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Re: Need peeps advice!
« Reply #7 on: December 02, 2016, 10:06:09 am »
Kathleen, sounds like you have had lots of surgeries, but they were each important!  I'll be getting the gracilis muscle attached to the masseter nerve (thigh muscle to cheek) soon.  Hopefully it will work since I am 14 months out from surgery.  Glad to hear of your successes!

tugnutt

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Re: Need peeps advice!
« Reply #8 on: December 02, 2016, 10:15:25 am »
caryawilson, I am similarly impressed with Dr. Boahene.  My husband and I met with him earlier this week, and he was terrific in responding to our (many) questions.  I am as comfortable as I can be in facing another operation. He said to expect to be out of work for 2 weeks - in your experience, did your facial swelling and bruising clear in 2 weeks?  He also said that we would expect the muscles to start working in 3  months - how does that line up with your timing?  Thanks for the enthusiastic report; I found his name on this bulletin board and he seems to be the right person for the job (at least on the East Coast!).

Regarding your question about my eye, I had the lower lid tightening by an oculoplastic surgeon at George Washington University in DC about 6 months after AN removal.  It is far better than it was, but Dr Boahene believes that the gracilis graft will also help that, as the new muscle in the cheek will support the lower face better and not pull on the lid.  I hope so!

I liked your comment that he is crazy smart - and add that he is very approachable.

caryawilson

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Re: Need peeps advice!
« Reply #9 on: December 02, 2016, 12:25:56 pm »
Baohene - top rated.  Not too back for an African, that became a Veterinarian in Moscow, and was then trained at the Mayo clinic.

Several surgeries and all were a little unique with a few subtle surprises.  Easy surgeries.  Go to sleep, wake up, convince the outpatient nurses to let you go, few days of discomfort, probably some bandages,

For surprises, the sureal cross facial nerve graft has small stitches near both ears.  My girl friend was impressed and said it looked like the stiches from a really good face lift.  (Note: facial paralysis ..it's not as easy as a facelift).    However, I was surprised by the stitches in my mouth.  It turned out they pushed the nerve to connect the good facial nerve with my paralyzed side, by putting an incision on the upper inside of the lip.  Hence I needed stitches on the inside of the mouth.  In this case, no swelling, and needed to care of the stitches by the ear.  Mouth hurt because of the stitches for a few days, and little difficult to eat for the first day.  Never took pain medicine or aspirin.  It turned out that my leg, where the nerve was harvested, hurt the most.  And I now have three small scars on the back of my lower leg to show for my unique experience.

The Masseter To Facial Nerve graft.  This had some swelling around where the masseter nerve connected to the jaw.  Not too bad on swelling.  Didn't take pain medicine.  In this case, I needed to wear a sling, that went to the top of my head and around the jaw.  This was less than ideal, and impossible not to get stares when leaving the house.  Honestly, I didn't really care, and I needed to wear this for two weeks. 

I would imagine in your case, with a muscle transfer, you will have some inconvenient surprises.  i would bet you would require a sling.  I know most plastic surgeries, (including breast implants, butt implants), you need to really avoid anything to stress that area until the body can heal with the new muscle, nerves, implants.

Now, that I have lived through it, I don't think I would have changed anything about how I provided with my analysis.  Even if I knew everything in exact details, I would have proceeded.  I had enough on my mind. I'm betting two weeks out of work is about giving time for the transplant to successfully integrate.  Don't worry on the bruising.  I would bet the leg will be slightly more painful than the face.

As for the time.  Yes three months is where I started to notice some slight improvement.  In this case, when I would bite hard, the corner of my mouth would slightly move.  It was hard to tell at first, and I needed to look in the mirror.  The sureal cross facial nerve graft was more subtle.  It was supposed to give me symmetry when I smile, but this didn't completely work.  When I smile, the sureal nerve graft does not move the paralyzed side of my mouth.  However, I have some more definition on my face.  In summary
* I have learned to smile using the masseter nerve graft, but I don't need to bite down anymore to activate.  It's a small smile.  If I try to smile to hard, the eye starts to close. 
* The sureal nerve graft added definition on my paralyzed face.  Basically, I have that normal crease that separates the cheek from the lips and runs up to the nose.  So my face looks more symmetrical.

In the end... No guarantees, but in our elite, complete facial paralysis group, we have nothing to lose.   I'm definitely much better, but I'll never be like I was prior to my AN experience.  Hence is life.

4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

tugnutt

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Re: Need peeps advice!
« Reply #10 on: December 02, 2016, 07:02:20 pm »
Caryawilson, thank you SO much for the great detail! It really helps me have a better idea about what I might experience.  I was a bit concerned about the gracilis graft; I ride horses, and worried initially that my inner thigh muscle might be impaired (although riding is mostly about balance, not strength) but Dr Boahene assured me there would be no lasting weakness.

I guess I won't expect to have stitches in my mouth as we are not doing the cross facial nerve attachment.  Dr B didn't necessarily think it would help my situation.  I find that a relief, with the context of your experience.  'Specially because for you there wasn't much improvement.

He told us to expect a 3 month recovery before any animation returns to my mouth. I am sad I will never have the big silly smile I had before my AN surgery,  but hey, everything changes.  I'll just be delighted to have a more normal appearance, and the ability to chew a sandwich!

Good to hear too that you didn't experience a lot of pain - I have been so lucky not to have pain so far, I don't know how I would deal with on going, chronic agony.  So I am hoping, in that respect, to follow your lead! My final question is - how long ago was your last surgery?   Do you feel like things continue to improve, or is it stable?

nancyann

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Re: Need peeps advice!
« Reply #11 on: December 02, 2016, 07:05:21 pm »
I had my facial nerve cut, a year later went to Johns Hopkins and Dr. Patrick Byrne did my T3 surgery, one of the 1st 10 to have it done, I am very happy with the results, 9 years later still holding!  I hear they have perfected the T3 so it is less invasive.  Wishing you all the best.  If you google facial reanimation johns hopkins, you'll see me in the before/after photos - i'm the one with the blue striped turtle neck!
« Last Edit: December 02, 2016, 07:43:17 pm by nancyann »
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
right facial paralysis
good to go.

caryawilson

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Re: Need peeps advice!
« Reply #12 on: December 02, 2016, 08:22:21 pm »
My 17.5 hour AN surgery was on 4/1/2015.  I then started having facial reconstruction surgery within two weeks (4/9/2015) and that last surgery was the masseter to facial nerve graft, which was on 8/24/2015.  I started noticing small movement on the corner of the mouth around 11/20/2015.

While the sureal nerve graft did NOT work as I had hoped, it did add some definition to my face.

My improvement is basically due to me practicing to activate my masseter nerve without clinching my teeth.  I think most of the healing is done and now it's up to me.

Eating sandwiches..... oh yeah.  Still NOT perfect.  I definitely use 20 times the number of napkins, prior to my facial issue.  I put the sandwich in my good side and move it to the bad side.  No improvement on this one.  I can move the corner of my mouth to give me a small smile, but still have the issue with hot liquids and I'm messier with foods.

In the end, facial reconstructive surgery is easy compared to the AN recovery, and any inconvenience is small if it could improve my facial paralysis.  Since, as you know,..... facial paralysis SUCKS.  Either way life will go on, and I wasn't going to let it slow me down, but any discomfort for a couple weeks was worth the potential upside.

In my case, I tried NOT to get my hopes to high and really didn't have any expectations. 

However, I was going to try everything possible.  Also, keep in mind I didn't have any rehab.  I know many people swear by rehab, but the data is unclear if it really helps, or improvement is due to normal healing.

Listen to Dr. Boahene if he would want you to do rehab.  He advised me against it, but your case is different than mine.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene

tugnutt

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Re: Need peeps advice!
« Reply #13 on: January 14, 2017, 09:45:11 am »
An update:  I am home from the gracilis graft to masseter nerve attachment surgery.  I look like a chipmunk on steroids!  Lots of facial swelling, but the bruising is going away very quickly.  I feel good, have to monitor the drain for the excision of the gracilis flap, but overall, apparently everything went well.  I am looking forward, in time, to having better balance in my facial features (less droop) and some mobility around my lips (how many times can I bite my lip without learning to move it aside?  Apparently, quite a lot).

Thanks to everyone who encouraged me.  The surgery was not a cakewalk but I am very glad to have had the option to have it.  I see Dr Boahene Tuesday for follow up, if there is more intel, I will gladly share.


Amz569

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Re: Need peeps advice!
« Reply #14 on: January 25, 2017, 07:37:42 am »
That's great! Glad everything went well. Did you get a timeline for recovery and when to start seeing the results?
I'm hoping to get in touch with Jackie Diels as my first approach. She comes highly recommended from this group. Then as my last resort will dig deeper into the best plastic surgeon in Canada for this. Haven't been successful yet with finding advice north of the border.
Best of luck! Keep us updated

 


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