Any advice?

[madison]

Hi all!
Well, it's been 5 months since my translab surgery. The good news is my smile is almost back!  But...
Just this week I noticed some sensation on the surgery side like contraction or slight twitching? Now my face looks different.. Kinda uneven, but not like before..it's tighter or my lips are actually higher on the surgery side now. I'm hoping this is just part of the healing process and things will eventually fall into place!  I still cover my eye and put refresh pm in at bedtime since I don't make tears in that eye. I also still have a horrible taste in my mouth and some numbness.
Can anyone tell me their experience with facial paralysis and changes that occurred, etc...how you are progressing, and whether you've heard of this kind of thing happening?
Thank you so much! I hope you all have a wonderful holiday! Ttys 

[chloes mema]

Madison
I did not have surgery but I did have CK now six months after CK I have hemifacial spasms (self diagnosed by Dr. Internet). 

My neurotologist prescribed a Medrol pack but that did absolutely no good.  Also, he basically blew me off when I made an appointment to go in to discuss what was going on with my face.  Luckally, I had an appointment all ready scheduled with my oncologist the following week.  Now he did some minor "facial" tests, told me he could prescribe a stronger steroid but he definitely wanted to see me in six weeks.  Also, told me to call if it got worse.  Well, it did so I called and he did not hesitate to call out a prescription for Gabapentin.  This is my third day on Gabapentin and it seems to be doing the trick.  I'm not getting full blown, strong spasms now but I can still feel the muscles moving a bit.

So two things I offer to you:  1)  If one doctor doesn't give the information or answers you want keep seeking helping with your other doctors.  2.)  There are meds out there that can help.

Have you called you doctor about this?  I called my neurotologist immediately and then for days afterward.  For me, I was not going to let this just be.

Good luck, keep us posted. 

Karen

[PamJ]

Hi Madison I had translab 19 months ago and had all the symptoms you've described, at first my face was getting back to normal at a steady pace but now things have slowed down.  I still have the foul taste and my eye can nearly close but not quite.  I think after a translab operation it's a matter of things improving at their own pace as it is a very intrusive operation,  I still have a 'wonky' smile and my surgeon said he can correct this for me but wants to wait and see if the last few probs right themselves.  Good luck.

[dmath]

Hi, my name is Dennis and have just had MVD surgery for Hemi-Facial Spasms. The surgery was on December 6 in Orlando Florida. I studied surgeons for months and found the one I wanted here. The surgery went well and when I woke all the twitching and spasms were gone. Had a terrific headache, naseau and dizzines. Stayed in ICU till 11PM Friday the 7th. When I woke on Friday I had a few twitches but very far apart and nowhere as servere. This is not unusual for this to happen. I gained strength and was released on Sunday the 9th. The drive of 2 hours home was very difficult. Once home I was able to relax and let things take their course. Then on Friday the 14th. My wife and I went to dinner and she noticed my right eye was not blinking. I then tried to eat with little success. I had developed full facial palsy in one day. I was scheduled to have my stitches removed on Moday the 17th. so I called the Dr. and he said to me him in the emergency room to check for a stroke. I did and it was not a stroke. He immediately started me on acyclovir and prednisone which is a typical traetment for Bell's Palsy. Now my question is: For those out there that have developed facial paralyzes after this type of surgery when and how definite where the improvements if at all?

I am like every one out there that have no patience. I understand that is not a good thing in a situation like this but it is there.

[saralynn143]

dmath - Hi. Like you, my surgery was MVD for hemifacial spasm. Since your facial palsy was of the delayed onset type, you have a much higher chance for full recovery than if it had occurred during surgery. It's good that your surgeon put you on the steroids.

There is a great site at http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm - pay particular note to the section on predicting facial nerve recovery.

Hope this helps.

Best,
Sara

[dmath]

Thank You Sara,
I read where you had an eye weight implanted a couple of months post-op. What exactly does the eye weight do? My doctor mentioned the same to me.
I must say though that not having the spasms right now is great!!! Only concerned about facial movement.

Thanks fot you help & most of all support,
Dennis

[saralynn143]

Dennis - The weight mainly helps keep the eye shut at night. It provides a bit of aid blinking, but a complete blink requires mental effort if that makes sense. I still have to use Refresh PM round the clock to keep my cornea moist.

In your situation my hope would be that the facial weakness would be of short enough duration that you won't need a surgically implanted eyelid weight. There is an external version called BlinkEze that you might look into.

[dmath]

Thanks Sara,
Your knowledge and kind words are very much appreciated. May I ask one more question-I am early in my recovery and since I am not doing much but searching the net for answers about facial palsy I have not found a site or even a personal history of anyone who has/had full delayed facial palsy after MVD surgery with a possible time line of recovery. Also if the recovery was full or partial. I know these things vary from person to person but reading about the progression, good or bad, helps my mind. I have read the statistics of studies done on how may people have this complication and the final results of those studies. I am just looking for a more personal exchange with someone in my shoes!

Again, Thank You
Dennis

[saralynn143]

Dennis, if you haven't already, go to the hemifacial spasm association site at http://www.hfs-assn.org/ and poke around. Also join the group at http://health.groups.yahoo.com/group/hfs/ and post your inquiry. I guarantee you will get the answers you are seeking.