Author Topic: first sign of movement good or bad???  (Read 5910 times)

steph28

  • New Member
  • *
  • Posts: 24
first sign of movement good or bad???
« on: July 27, 2010, 02:44:39 am »
Hi all

I thought I'll let you all know that I noticed my first sign of life with my facial nerve yesterday.

When I try to raise my face up (ie move my eyebrows) the corner of my months moves. After jumping around the place last night and calling my mum I calmed down a bit. Now worry has set in as I'm concern the nerve is healing incorrectly and that's the part of nerve which controls my forehead.

I have appointment to see the plastic Sergent next week to talk about what they can do and I will show him everything and see what he thinks, but is it a sign that the nerve is on the road to recovering. Its been just over 7 month since the op, so it is a good thing.

I have never used a facial stimulator, but did chew a lot of gum as I was told at the time that it would help with the headaches.

Did anyone else experience this?

Take care

Steph
x

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: first sign of movement good or bad???
« Reply #1 on: July 27, 2010, 07:08:03 am »
Hi Steph-

Just curious - have you talked to or seen a facial (neuromuscular) therapist?  What you are describing could possibly by synkinesis, but you'd really need to talk to a medical specialist to know for sure.  Did you ever talk to your docs about chewing gum?  My reason for asking - my docs specifically told me NOT to chew gum as it would "overwork" the facial muscles.  However, there seems to be conflicting opinions on this. 

I started to get my first real discernable movement at about 6-7 months post surgery, so your time frame sounds about like mine.  I've gotten about 80% recovery and most people wouldn't even know that anything is "off" now.  So, keep the faith!

I look forward to hearing what your plastics guy has to say.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

steph28

  • New Member
  • *
  • Posts: 24
Re: first sign of movement good or bad???
« Reply #2 on: July 27, 2010, 09:28:08 am »
Hi Debbi

My doctor never told me know to chew gum and I had read that it was a good thing to do to help with headaches and the facial nerve.

I must ammit I wish I had found this site before the op as I have learnt so much.

I will keep you up dated on What the plastic Sergent says. I do know from my last visit with him just over 4 months ago he told me that even doing a nerve transplant from my foot there could be cross wires and if it worked when I smiled I could wink instead. I think I was just so happy last night that a part of my face moved.

Take care
Steph
x

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: first sign of movement good or bad???
« Reply #3 on: July 27, 2010, 10:11:35 am »
Hi again-

Since it has only been 7 months, there is still a very good chance that your nerve will heal and that you'll have your smile back.  Of course it is good to know what your other options may be, so good that you are seeing the plastics specialist. 

Good luck!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: first sign of movement good or bad???
« Reply #4 on: July 27, 2010, 10:49:51 am »
My first thought is always any movement is good movement. That means the nerve is not severed or dead and has the capacity to continue to heal.

Like Debbi, I was told not to chew gum. My facial nerve specialist told me to try not to force any movement during the first year. By that I don't mean not to try to move at all, just not to try to force the movements to be bigger. He even had me wait a year before considering facial physical therapy. He told me this would minimize synkinesis.

Also like Debbi I have had slow and steady improvement over the two years since surgery. I would not say I am at 80%, but in general people do not notice anything wrong with my face any more.

Hope you continue to see improvement and that your appointment with the plastic surgeon goes well.

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

Kaybee

  • Jr. Member
  • **
  • Posts: 56
Re: first sign of movement good or bad???
« Reply #5 on: August 03, 2010, 04:15:27 pm »
Congrats on the movement. It feels good when it shows some life!  I am no expert but I have paralysis as well.  I had no movement for 6 months but it has gradually improved over the last 3 months.  Don't assume it's synkenisis so soon.  When those first signs of movement came back for me, the movements were not as natural and fluid as pre-surgery!  And as Jackie Diehls told me when you smile, it's not so much your mouth that moves as it is your cheeks.  My first movement was the corner of my mouth and I could only do it by trying to snarl my nose.  Hope the recovery continues!
2 x 3 x 4 cm tumor removed at Methodist Hospital in Indianapolis 10/30/09
Left facial paralyis/SSD (showed first signs of improvement at approximately 6 months post-op)

steph28

  • New Member
  • *
  • Posts: 24
Re: first sign of movement good or bad???
« Reply #6 on: August 05, 2010, 01:40:49 am »
Hi Debbi, Saralynn and Kaybee

Thank you all for your messages.

Yesterday I went and saw the plastic surgeon. I was hoping for better news, but it wasn't to be.

Yes the Dr saw the movement, but at the same time he told me that we are 7.5 months down the line and still I have very little movement and from his experience mt nerve will not improve anymore. I know what everyone on this site have said that the nerve still continues to approve, but hearing that from the Dr was really disheartening.

We talk about a gold weight, but I'm still worried about that and he also talked about a face life on my right side to help the lower eye lid, which will not effect the nerve.

We also talked about the ops! his thought is there is no point in the 1 year op as muscles may have already died so the effect may not be all that good so we are talking about the two year op.

Anyway its all my call and his left it that he will see me in a year unless I wont anything and I can just call him. I think he realised I was not 100% happy with what he said.

I know my face will never go back 100%, but I wasn't expecting this. I still have to have GK as well.

Take care all

Steph
x

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: first sign of movement good or bad???
« Reply #7 on: August 05, 2010, 05:58:09 am »
Steph, please read Jeanlea's post "Facial Progress" here: http://anausa.org/forum/index.php?topic=7247.msg75716#msg75716

Note that at one year she did not have much movement or tone, but at three years, she has a pretty smile.

I wonder how many facial paralysis patients he has worked with to say that in his experience your nerve will not improve any more. My facial nerve specialist told me specifically not to do anything for a year before making any decisions.

Also, please remember that facial muscles atrophy much slower than skeletal muscles, so I do not understand his comment about your muscles being already dead. Time is on your side, especially if you have seen some movement.

This IS your call. Since he left it at seeing you in another year, why not do exactly that? You've got plenty on your plate with upcoming GK. See where you are next summer, and if necessary find another opinion.

Best wishes,
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

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: first sign of movement good or bad???
« Reply #8 on: August 05, 2010, 06:51:15 am »
Steph,

Sara is right that many of us have seen more improvement well past a year.  And, the facial therapist I saw said that the muscles won't "die" for years, if ever.  They are not like the other muscles in your body in that regard. 

Do you have the option of seeing another surgeon to get a second opinion?  Or is there a facial (neuromuscular) therapist somewhere nearby that you could schedule an appointment with? 

Don't give up, Steph.  You are right that your smile will probably never be what it once was, but you still have a very good chance of getting a smile back!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Lizard

  • Hero Member
  • *****
  • Posts: 791
Re: first sign of movement good or bad???
« Reply #9 on: August 05, 2010, 07:54:11 am »
Steph,
I vote for a second opinion...this guy seems to be a negative Nancy and you need someone who his positive and willng to listen to you and try to do anything to help with the progression of your movement.
Take care,
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
-Franklin D. Roosevelt

jilljpower

  • New Member
  • *
  • Posts: 25
Re: first sign of movement good or bad???
« Reply #10 on: August 05, 2010, 10:24:00 am »
Hi Stephanie,
I feel your confusion because most of the western Dr.'s I have seen say that after 2 years the nerves are done regenerating.. However, in Eastern practice, I am told that your nerves regenerate for the rest of your life.  I finally received an answer from a western Dr that I respect thoroughly.  He said "With all of these confusing answers that you are getting from Dr's, isnt it pretty clear that no one really knows."  I appreciated his honesty and now I feel better with letting my face do it's think naturally and give it time. 

The 7/12 was recommended to me by one Dr. who said that my nerve is done growing after 9 months.  With research and this discussion forum,  I heard that in the process they sever your nerve and you start from square 1with your nerves.  I just cannot understand why it would be recommended to anyone who's nerve is intact.  Anyway, I am interested in the T3 which is a surgery connected with muscles in your scalp and mouth.  I do want to hear if the surgery will interfere with your nerve growth over the years.

Also, I just had the gold weight put in my eyelid post surgery 13 months.  I was scared because I didn't want to have a heavy and bulky lid.  I am very pleased though, and it feels so great to be able to close my eye again.

Good luck to you... I definately agree that you should talk to a different Dr.
Jill
4cm AN, debulked 6/22/09 Redwood City, CA Kaiser.  1 gram platinum gold weight in eyelid.  Nerve intact, but full facial paralysis.  Cross Facial Nerve Graft- 2step process 11/2011 and 7/2012.  Try blogging, it has been great therapy for me.  www.jilljoyousjourney.blogspot.c

Jeanlea

  • Hero Member
  • *****
  • Posts: 799
Re: first sign of movement good or bad???
« Reply #11 on: August 06, 2010, 04:52:13 pm »
Steph, I think you are still very early in the facial recovery process.  If you have movement at 7 months and the nerve is obviously not cut then there is no reason to not believe that continued movement is not possible. Like Jillpower said, doctors do not really know what the facial nerve can do.  At 6 months I was told that my face would not come back.  At that point I so little movement it was barely noticeable.  I was devastated.   I had to accept the fact that I would look like that forever.  Maybe that acceptaance was necessary.  I don't know.  But alas , our bodies can surprise us.  It's been nearly five years since my surgery and I am still making improvements.  I think the biggest gains were around 18 months.  The change is more subtle now, but it continues.  It's nice to be able to smile again.  I'm sending out good vibes that you may also see such changes.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

steph28

  • New Member
  • *
  • Posts: 24
Re: first sign of movement good or bad???
« Reply #12 on: August 13, 2010, 10:02:19 am »
Hi Jean

Thank you for your kind words. I have looked at your pic's and I can't believe the improvement you had over the years. I have also been showing off your pic's to family as it has feeled me with hope. My Sergeant has informed me that GK will take place in November so I pray to god the facial nerve will cope with it. The GK worries me more then the surgery did, but I know I have to have it done and It will be more productive sooner rather then later. I can honestly say this time last year when I was diagnosed I never knew what I was instore for.

Thank you again.

Take care

Steph x :-\