Introducing myself

[saralynn143]

I had a microvascular decompression for hemifacial spasm on June 2 and awakened with facial paralysis on the left side. My neurosurgeon said that the nerve was unhappy from the outset. He was not pleased with the outcome and said that he had a "bad feeling" about my nerve, but did not say why. We discussed possible outcomes, including facial reanimation surgery later on if necessary. I am about five and a half weeks post-op and the only improvement I have seen is a very faint nasolabial fold and my mouth has loosened up a little so that it is easier to eat, drink, and brush my teeth.

I have just been fitted with a BlinkEze eyelid weight and it is helping me a lot. I have an audiogram scheduled for next Tuesday. My hearing is muffled, seems like about half volume, but it doesn't affect my everyday activities. I do notice it in crowded rooms with lots of noise and big areas such as arenas.

My regular neurologist declined to do the follow-up tests that my neurosurgeon requested, and as a result I discovered that there is a Facial Nerve Center at Washington University in St. Louis. I have an appointment with Dr. J. Gail Neely on July 29. I will be eight weeks post-op by that time.

Although I am not an AN patient, I have found much useful information about post-op facial weakness, hearing loss and eye issues here, and I am hoping that we can learn from oneanother.

So hi, I'm Sara, and I'll be back in touch from time to time.

[Kaybo]

Hello Sara & WELCOME!!
Glad you found this site and that it has been helpful to you.  Continue to seek us out and ask any questions - I don't know how much help we'll be, but we will sure try!!

K   

[Cheryl R]

Sara,   2 years ago I had a facial neuroma, which we knew ahead that it was.      My neurotologist let me know ahead that he would possibly be unable to save the facial nerve.     That is how it turned out and during the same translab surgery, nerve from by my ear was removed and grafted on the facial nerve.       It took over 8 mos but I look nornal at rest and do have some but not complete movement.    I was very happy how well it ended up even if is not perfect. 
I hope your improves in time which it might but if this is a silmilar to what your dr talked about can help also.    There is also one where nerve from the leg is used.             
     I have a daughter named Sarah Lynn so like your name also.
                                                Cheryl R
                                                             

[Jim Scott]

Hi, Sara:

I'm Jim and I'm around here all the time.

Welcome to the site and the forums.  Although you didn't have an Acoustic Neuroma, your Hemifacial Spasm is even rarer, I believe.

I was sorry to learn that you're dealing with post-op facial paralysis.  I do hope that can be remedied, even if you have to resort to surgery.  It would certainly be worth it.  The eyelid weight usually is a welcome addition for those in your situation.  I'm glad that gave you some relief.  The hearing issue is one AN patients are all-too familiar with, I'm afraid.  The majority of us suffer from SSD (Single Sided Deafness) meaning we're either totally or partially deaf in one ear.  Some employ a 'BAHA' (Bone Anchored Hearing Aid) to facilitate hearing while some of us just soldier on with the one 'good' ear.  I just read that Brian Wilson of Beach Boys fame; singer, composer, arranger and producer of many of the groups most memorable hits, was born with hearing in only one ear and used to use monophonic equipment to listen to his groups playbacks of recording sessions.  Brian Wilson still performs live shows at age 66.  He's coming to my area soon and the local newspaper did a feature on him and included the information that Wilson also lives with SSD.  I figure that if he can do as well as he has with limited hearing, I can deal with it.  Besides I had normal hearing for almost 60 years and enjoyed it.  I miss it but can get along without it as I have no choice in the matter, outside of a BAHA or similar aid, which simply doesn't interest me at this time.  Maybe someday. 

I wish you continued healing and look forward to seeing your posts.

Jim

[Karen]

Hi Sara, Where do you live?  I live about 2 hours from St.Louis and Dr. Neely did my AN surgery about 4 and 1/2 years ago.  Let me know what you think of him.  I have very good doctor's at Wahington University.  Let me know if you have any questions.  Karen P.S. I have facial paralysis and Dr. Neely did my 1/7 nerve operation. 

[saralynn143]

Thanks everyone. I belong to a support group for HFS, and I also joined this one and the one at the Bell's Palsy site. Thank God for the internet.

Karen, I live in Jefferson City, also about 2 hours from St. Louis. I was so relieved to learn about the Facial Nerve Center that I nearly cried. I wish that I had known about it weeks ago, but everything in its time, I guess. I'm just so anxious to hear what Dr. Neely has to say.

I'll be sure to post again when I know something.

Sara

[Debbi]

HI Sara-

Just wanted to say "welcome" and nice to "meet" you.  I'm one of the ANers who has facial palsy, so I am quite interested in learning what others are doing to cope, cure, heal.  I'm only a few months post op, so very early in this process with outcome unknown.  There are several good strings going on the Facial Issues section of this forum, so hopefully you'll visit and share. 

Meanwhile, I wish you good luck with your appointment w/Dr. Neely - it sounds very promising.

all the best,
Debbi (who lived in St. Louis in '90-92)

[cmp]

Welcome, Sara!

Glad you are finding useful info here, and that you also found the Facial Nerve Center near you! I don't know how the estimated timeline for nerve reanimation after the procedure you've had compares with estimates after AN surgery, but 5 1/2 weeks post-op doesn't sound very long in "neurological time"...

The fact that you've already seen a bit of improvement seems encouraging, too!

Good luck with Dr Neely--I hope you'll find great info from her...

Carrie

[saralynn143]

I think that the nerve trauma is similar between the surgeries for HFS and AN. I do remember asking Dr. Casey about the timeframe for facial reanimation and he said sometime after three months. That seems awfully short though compared to what I've read here and at the Bell's Palsy site.

I'm sure I'll know more after meeting with Dr. Neely. I'm sure the next two weeks are going to seem awfully long.

Sara

[CROOKEDSMILE]

Hi Sara,
After my MVD and facial paralysis they would not even consider any type or reanimation until 12-18 months post surgery because they want to give the nerve time to regenerate and see if you will recover any. Sometimes it takes 12 months before you see your first movement and you could really cheat yourself of potential healing if you rushed into things too quickly. I didn't have any movement until 5 months post op. What will help determine your treatment choices is your EMG studies. If those show polyphasic potentials and continuity of your facial nerve then no doctor will dare touch your nerve because some recovery is likely to occur with time. You will show alot of fibrillation potentials at first which show denervation of the facial nerve BUT with time those switch to polyphasic potentials which tells you that the nerve is actively regenerating. Once these show up then it can be 4-12 weeks before actual function returns. The big thing to determine right now is if you have continuity of your nerve and they will do a needle emg to assess that. If it is intact then it will be the waiting game. If you have NO or minimal movement and poor emg results after 1 year then you should think about reanimation. I think that the docs have pretty strict criteria for who they will do that surgery on. Good luck to you and May God bless!
Angie

[saralynn143]

Hey Angie!
You are the fourth or fifth person with immediate facial paralysis after MVD to tell me that their first movement started at five months. That will be November, and a very happy Thanksgiving, I think.
Sara

[Debbi]

Hey Sara-

Debbi again - I just noticed that you have a Blinkeze eye weight.  How do you like it?  What are the pros/cons? 

I am calling for an appointment with an opthamologist tomorrow to see about getting one.  It would be heaven to be able to blink!

Debbi

[saralynn143]

Hi Debbie,

This was my first weekend with the BlinkEze. I have a biggish one, 1.6 grams because my ophthalmologist wanted complete blink closure.

I am having some difficulty finding the "sweet spot," but I hope that with practice it will become easier. Because my weight is larger than the adhesive strips, I am using two to keep it from pulling down so much. Also, if I put it in the wrong spot, I can't use the same strip to reapply. So I am going to blow through the initial supply of 100 strips pretty quickly. Tomorrow I plan to call MedDev customer service and see if they have any tips for success.

I had thought that it would not show when my eye is open, but that is not the case. I have a pink one (the lightest color) and it looks like a small band-aid stuck to my eyelid. I have found that a pair of almost clear sunglasses conceals it rather well. I was lucky enough to find a pair in a drawer today to wear to church, and got a lot of compliments on them!

I wore it all day Friday, but Saturday and Sunday I had to take it off in the early evening because it just seems too heavy and pulls down over my lashes after I have worn it for a while. However, even if I just wear it for a few hours a day when I need to go somewhere it beats a patch or trying to keep my eye wet enough to see clearly.

It does not look nearly as small as the one on the MedDev website, but that one is likely one of the really small ones. I can't put mine as high on my eyelid as it says to on the website either, because it more or less turns itself upside down when I blink, and doesn't close my eye nearly as well anyway.

If customer service has any hints, I'll pass them along tomorrow. I think it is a tremendous concept, either for a short-term problem or to decide about an implant -- and I do encourage you to try it out with your ophthalmologist.

Sara

[Debbi]

Thanks, Sara - great feedback.  It sounds like it will take a little time to find, as you said, the sweet spot.  I was able to get an appointment first thing tomorrow morning, so hope to be measured for one then.  The idea of being able to close my eye is very exciting!

Are you able to sleep with yours?  or is it too soon to tell...  I would love to be able to sleep without a patch or tape on my eye...

Debbi

[saralynn143]

I had my post-op audiogram today. According to the audiologist, I have low-level hearing loss on the left side. The eardrum is working properly, and I understand about 85% of speech at a normal conversational level. Interestingly, my understanding fell to 64% at increased volume. (I tested at 100% for both on the right side.) That's actually a little higher than I expected. I asked if my hearing could still improve, and she said it is possible since I was not hearing immediately post-op. She recommended another audiogram in about a year.

I've been having a little trouble with the external eyelid weight. The weight is bigger than the adhesive strips, so it tends to shift after I've worn it a little while. I can tolerate wearing it for two to three hours at a time, which makes it good for errands, but I usually take it off once I'm back at home. I called customer service today, and the pleasant young man I spoke to is going to have management call me back to discuss the problems I am having. The weight is also not as unobtrusive as I had hoped. It looks like a little bandaid stuck to my eyelid. I have a lightly tinted pair of sunglasses that obscure it well enough that I do not feel overly self-conscious.

My appointment with Dr. Neely at the Washington University Facial Nerve Center is two weeks from today. I am looking forward to hearing what he has to say about my situation.

Another of my friends has told me that she had a bout of Bell's Palsy; that makes three. Also I've had five different people with the same situation as I (waking from MVD with facial paralysis) tell me that they first experienced movement five months after surgery. For me that will be November . . . and a very happy Thanksgiving, I think.