Author Topic: 3.5 Months Out From Surgery. Need Some Encouragement!  (Read 2928 times)

InnerGrace

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3.5 Months Out From Surgery. Need Some Encouragement!
« on: September 14, 2016, 04:12:08 am »
I had my 4 month (14 weeks?) appointment yesterday.  Had my MRI and visit my neurosurgeon.  On the good hand, my MRI looks great!  They left a sliver behind in order to preserve facial function, and it hasn't changed.  However... I DO have facial paralysis.  I do believe it still stands at a 5.  However, I've been seeing a facial therapist since the end of July.. have seen him 3 times now.  He is very encouraging.  Since I've started seeing him, I have more control over closing my eye.  It does not close on it's own however, I can close it when I focus on it.  I also have strange things happen, like my mouth pulls on it's own at times.... I have had my chin pucker for a quick second, nerves pulling it it..so there is activity.  I took a video of myself near the end of July and just two days ago.  You can see a major difference in my speech and you can see more of my teeth and you can also see in the second video more use of the paralyzed side of my mouth.  Now, to ME, those are all positive things.  All pointing toward some sort of nerve activity.  However.. my neurosurgeon came in the room, told me to smile.. told me to blink... and says.. "not much change".... *sigh*  Wasn't he the one that beat it into my head that nerves take time???  That they are very slow to grow?????  So he starts on this "if you don't see any movement or improvement in the next couple of months, I want you to see  a facial surgeon and see what your options are with facial reanimation"...  NO!  Just, no.    I have been so encouraged.. and so hopeful and in 5 minutes flat, all of that was destroyed.  It's only been 3.5 months!!!!!!  I refuse, and this is my OWN personal place... to get any other surgery.  If they told me my face will NEVER come back... I would stay this way.    Would I be greatly disappointed???  Absolutely....  I'm just seeking out other folks who have had facial paralysis that can give me their recovery stories (or recovering) to bring me back to a place of hope!
Diagnosed 4/28/2016
2.4 x 2.0 x 1.9 cm AN
Symptoms:  Mild Hearing Loss, Mild Tinnitus, Mild Balance Problems, Possible Vision Issues, Some Vertigo.
Retromastoid Craniectomy 05/30/2016. UPMC Presby
Dr's Gardner and Hirsch
Left SSD. HB 6 Facial Paralysis.  Waiting for the nerves to wake up...

researcher

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Re: 3.5 Months Out From Surgery. Need Some Encouragement!
« Reply #1 on: September 14, 2016, 12:12:06 pm »
I would wait to see what your face is doing at 6 months and at 12 months. You are smart to take video of yourself and do your own assessments. The doctor is only seeing you at that one time in his office.

I woke up with facial paralysis on the AN side. Eye wouldn't close, the full 9 yards. I went  to the opthamologist to make sure I was taking good care of my cornea. Make sure it wasn't getting "scratched". I wanted to know if there was a goggle or eyepatch or something I could use since I really didn't want to tape my eye shut. The doctor listened and said that they could sew my eye partially closed. I freaked a little. I was only 3 weeks from surgery at that point. My cornea was fine and I did my own research on the goggles.

My point is the doctor will have his/her opinion but it's your eye, face, brain, etc. I would just wait on any more surgery. That's my opinion.
 
All the wiggles, puckers, and twinges are signs that your nerves are waking up. You are doing great!!!!

caryawilson

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Re: 3.5 Months Out From Surgery. Need Some Encouragement!
« Reply #2 on: September 16, 2016, 12:43:30 pm »
My advice. See a facial reanimation specialist promptly and know your options.

I think in ways my AN was easier. It was 4.5 cm and the facial nerve was surgically removed. Hence, while my decisions were emotionally painful, I did NOT have options. Watching and waiting or radiation were not options. Only surgery would save my life. A surgically removed nerve will NOT grow back so I started with nerve grafts immediately.

I think "waiting" must be unbearable. While difficult , start to understand your options. If you choose nerve grafts, time is one of the most important criteria to ensure success. I go to Dr. Boahene at Hopkins and he did amazing work for me.
4.5 cm, 17.5 hour modified retro surgery
John Hopkins: Lim / Carey
Complete Facial Paralysis
Facial Plastic Surgeon (amazing): Dr. Boahene