ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: NotTheSame on January 24, 2015, 02:07:19 pm
-
Almost 4 mos out from the resection of my 4.5cm AN that left the left side of my face completely paralyzed (including eye) and deaf in my left ear. A good portion of my face is still numb too. I was told though that he nerve was intact in the operating room when they patched me up. Ive been reading this forum about the realistic chances of having my face back to normal (or close to normal) and all I can find is horrible outcomes. Has anyone had complete facial paralysis that has recovered? How about recovery of the eye? I've been told that my face still has a good amount of "tone" so the doctors are hopeful. Is this a load of **** or do I have something to look forward to? I'm relatively young (32yrs) and the thought about living the rest of my life like this is extremely depressing. Thanks.
-
I am six months out and have total paralysis on the right side with absolutely no tone. I've been told it can take up to 24 months for the facial nerve to recover. Many posts on this site share about recovery in less than a year or maybe eighteen months. If your nerve isn't severed and you have some tone, I'd hang in there. I am. It will give us a rare perspective on how we perceive ourselves. My mantra most days is, "Patience." There are days when it just gets to you though and that's totally normal. Being 32 and having to go through this sucks, and I'm so sorry you have to deal with that. I use this forum as a venting zone during the really bad days and it helps.
-
Thanks for the reply. Can you link to some success stories because I am having a hard time finding them, all I see to find is horror stories about everything that can wrong.
-
this post seems to be getting a few hits but not many responses. I am not liking my odds now :-\
-
Hi NotTheSame .....
I was hoping others might reply to your post with their success stories. Many times patients recover, go on with their lives, and do not continue to post on this forum.
I hope your doctors told you going into surgery that the cranial nerves are very sensitive nerves. Even a tiny brush against them can cause them to "go to sleep" until they recover from the touch. Four months out is a relatively short time for recovery to take place. I know it is extremely difficult to be patient and wait.
You might want to contact Jacqueline Diels, who is a highly respected facial reanimation specialist to get her opinion on your case. See: http://www.facialparalysisinstitute.com/Our_Team.html
There is also a thread here on the forum about her: https://www.anausa.org/smf/index.php?topic=14483.0
Following my second surgery, I had mild facial weakness, which gradually resolved over a period of months.
Please seek some additional advice from professionals. At four months out, it is not a done-deal by any means.
Clarice
-
I find your remark about "horror stories" offensive. My challenges due to a brain tumor do not constitute a "horror" story simply because they are difficult and I choose not to see my story as a horror. Life is often about getting through one challenge to face another and it is rarely sensitive, similar to your choice of words. Success stories can be found under the most dire situations and some of life's best experiences happen because of unfortunate circumstances. Therefore, a broader definition of "success" may prove useful and you may find the comfort you seek in the gracious way others find success in times of difficulty.
-
Patience is key to recovery. I think of this whole AN experience as my master-class in patience. I've heard time and again how slow the healing process can be-especially for nerve injury, and at this point I can attest to the power of allowing yourself the time to heal.
I was 36 when I had my (first) surgery. I ended up in the hospital for the better part of 3 months (including Thanksgiving, Xmas, & New Year's). I mention this only for a bit of perspective.
My recovery has taken a lot of time and a lot of work. But considering that I've been told the doctors were just glad to get me safely off of the operating table after that 1st surgery, I'd consider myself a success story. Is this the outcome or path I expected or would have chosen? Absolutely not. But I'm still here, and the deficits I was left with hold me back a little less every day.
My facial nerve was severed in that first operation, as the surgeons raced to save my life. I had a hypoglossal nerve transfer a few months later. It was a few months before I started seeing the benefits of the surgery. Now, the tone on the affected side of my face has improved immensely and I can now generate movement in my face. I'm aware of things being "different" than before, but I think it's a lot more "different" in my head than in the eye of the beholder.
I've worked with Jackie Diehls and cannot speak highly enough of her. I'd recommend contacting her for some insight into your own case.
-
I haven't had the complications that you are dealing with but I am very sympathetic to your issues. 4 months is pretty new for recovering and have heard that the facial nerve can take a while to get better. You are very young to have to go through this. So please hang in there! I'm only 10 weeks out with some major headaches daily but hoping it gets better soon.
My doctor said to think of it as training for a marathon. Eat well, vitamins, nourish your brain, walk, take care of yourself!
I don't know if this helps but wanted you to know that you are in our prayers for a great recovery!
-
Many times patients recover, go on with their lives, and do not continue to post on this forum.
CHD63: I was/am hoping this is the case. And to answer your question, no my surgeon didn't really about the facial nerve before the surgery. He did mention that i would most likely lose my hearing though and I am still having a hard time coming to accept that. I didn't have much time between my MRI and surgery (1 week) to shop around and/or look into the complications so you can imagine my surprise when I woke up and found out that my face is paralyzed.
Mimispree: By no means was I trying to be offensive and I'm sorry if it was taken that way.
-
In my view it's better to have information - even the bad stuff - than remain in ignorance. It's the nature of humankind that when they've recovered they happily disappear from this scene so there's likely to be much more good news out there than we know about.
I feel for you as I feel for all of us with this condition. It sucks when you're old and it sucks probably even more when you're young but just being here means you're not on your own and that can help when things get dark. It seems you weren't prepared by your care team as well as you should have been and that's a shame but you're in the right place to get much valuable insight and experience and this is already evident in this thread.
Good luck and good recovery! :)
-
A couple of thing for you. Here's a helpful site from Harvard concerning post-surgical facial paralysis: http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm - pay special attention to the paragraph beginning "Facial nerve is anatomically intact, stimulates at low voltage, but no movement immediately after surgery."
There are plenty of success stories here if you look for them. As an example, my avatar picture was taken fourteen months after waking up with complete left-side paralysis. Now six years after the fact, the casual observer can't tell anything is wrong with my face although my smile is not perfectly symmetrical and my blink is still incomplete. I have an eyelid weight and wear a scleral contact lens and go about my business.
Do a search for a post by Jeanlea. I think it's called Facial Progress. She had to wait nearly a year for any movement at all, but ultimately had what I consider to be phenomenal recovery.
I wish you well in your own recovery.
All my best,
Sara
-
Dear NotTheSame:
I'm sorry if I took your comments too personally. I think I keep telling myself the facial paralysis is a minor concern, and every now-and-then some of my deeper feelings come to the surface of my emotions. I know exactly what you mean by success and horror stories and I was wrong for not being more sensitive myself.
As I wrote you beforehand, let's hang-in there and know that we have very good odds of fully recovering, if not on our schedule.
-
Hi
As others have mentioned there is good news on this site, but you have to look for it as many people come to this site and move along when things get better. Most of the people that posted here when I started posting 8 years ago have moved on to other things in their lives. I've been told that some of them still get together on facebook, I don't have an account so don't know for sure.
I still read the posts so I can try and help those that have just started their AN journey and to keep my eye open for new information that can help me. If it wasn't for this site I probably wouldn't be working now, would have filed for disability and would be existing not living.
I was 35 when I found out I had an AN tumor, scheduled for surgery 6 weeks later. Two weeks after diagnosis I broke my leg and was in a non-walking cast for 3 months. Married with 2 young boys to take care of. I was suppose to have a pre-op visit but couldn’t make it because of the complications with my leg. The day before my surgery I found out that I had a facial nerve tumor rather than an acoustic nerve tumor. They would be severing the facial nerve. It would take about 6 months before I would see any change in my facial movement. They told me my eye wouldn’t close or tear but I should have tearing after a while. They said I wouldn’t be able to drink out of a straw. When I woke up after surgery my eye closed most of the way when I closed my other eye, eye didn’t tear, still doesn’t. Tried to drink from a glass while eating dinner, couldn’t do it. My husband suggested I try a straw, I told him they said I couldn’t. He got me to try it anyway, sure glad he did, the straw worked just fine. My point here is that every surgery is different and so is the outcome, the doctors can tell you what they think will happen but they don’t know what will actually happen.
I know it’s hard but you have to wait and see how your nerves recover. You had a big tumor but they didn’t severe the facial nerve so you should do ok. My nerve as I mentioned was severed, at rest my face looks normal, grin fine, smile not so good. Perhaps there are surgeries I could try to improve my smile but to me it’s unimportant, I smile with my eyes and with what I say. My main issue was my eye not tearing, it became very painful and expensive. I have the scleral lens that Sara mentioned, got it 2 years ago. Found out about the lens on this site, none of the eye doctors I had seen knew about the lens. No more pain or spending $4000. a year on ointment!
Yes dealing with this can be depressing, I’ve thrown a few pity parties. Life is good now, married 38 years, 23 years since my surgery, worked at the same job for 20 years. Wish I hadn’t had a tumor sure! Kept me from enjoying life, no way!
We are here to help you tell you too, no longer need this site! Jill Marie 8)
-
I hope you can start to see some signs of improvement soon. I had a large AN removed about 6 months ago, with some numbness and facial paralysis. I am deaf now in the left ear, but really not too concerned about that. Nothing you can do about it. However, I had pretty much given up on my facial paralysis and a couple of weeks ago I noticed some movement. My facial tone is improving, and it's more symmetrical. So know that some of the side effects may get better, but it can take much longer than a few months.
Joe
-
Thats great Joe L. How is your eye doing? Blinking well? How about the numbness.
I too am deaf in my left ear and I try and tell myself it doesn't matter but its quite annoying. Looking into BAHA as a possible solution
-
I have a scleral lens from BFS due to no eye blink. Without this, My eye gets irritated very quickly.
With the "device", I feel mostly "normal". It's really just a special contact lens, lots of people have contacts.
I hope the paralysis goes away and I don't need the lens forever, but who knows. It's early for that.
Taping the eye shut at night does kind of suck, my wife always does that for me.
My numbness is zero, funny taste on my tongue sometimes though.
Hope this helps.
Joe
-
I don't have a blink either and my doctor advised me to have a permanent taroplasty done which is suturing the eyelids have way closed for several months will see what happens
Feline
-
Feline, I'm not sure why the doctor is recommending permanent suturing, especially since you aren't even a year post-surgery. Many people have a stitch or two put in, and they can be removed at a later date if warranted. Hopefully you can go with the temporary type. Best of luck to you! I wish I had opted for the eyelid weight. I seriously think it might have lessened the synkenesis I am experiencing now around my eye--but I'll never know!
-
Joe_L:
The tape on the eye does suck! I tried it and because I toss and turn a lot, it was constantly waking me up. In search of a better way to close my eye at night, I devised a comfortable eye-patch for sleeping and I urge you to give it a try.
Get a wide stretch hairband from the drugstore--the cheapest ones are the best. Put it around your head so that it covers your bad eye. Then put a piece of folded soft cotton gauze or clean cloth on top of your eye. Your eye will stay closed and it will be protected from middle of the night scratches or pokes. The hairband headband comfortably stays in place too.
It's goofy, but it's been a life-saver for me. It will keep the ointment in your eye too.
Be well,
Mimispree
-
Feline, as mentioned above you may not want to go down the permanent route unless necessary. I went with a temporary tarsorrhaphy and luckily after a few weeks I was able to remove it as my eye can close when laying down. Still no blinking though. I was fitted with a soft contact lens though to help with the dryness (even though my eye is numb I can't even feel it being dry).
-
Well it is a temporary permanent tarrsoplasty eye does blink when I think about it has a 4mm gap from closing all the way since I wear glasses I did not know I can still use a lens is this true?
Feline
-
Hello
I've had my AN surgery when I was 25. Tumor on the left side with the size of 4,2 x 3,1 cm. Kind of big for my young age but luckily I've survived the surgery and overcome most of post-treatment issues etc. Currently I'm 13 months after my AN surgery but still with facial paralysis (my facial nerve is intact). I see some small improvements (for example I can hold air in my mouth and inflate my cheeks) but I can't make any movement on the left side. I still have 3 mm gap when I try to close my eye. Few months ago I've started to feel twitches here and there. Now I can feel them almost every day. My doctors said that it will take 12 months to recover well ...
My doctors also said that it is very important to start with face rehabilitation ASAP which I did. Face massage, ele. stimulation, acupuncture. (face massage with ele. stimulation on daily basis) etc. But as I'm reading more and more on this forum many of you did the opposite. No face training for 6 or even 12 months after the surgery. My question is. Was I doing it right ? How come that some doctors are saying you should start with rehabilitations right after and some of them that you should wait some time ? How did/are you managing your face paralysis ? (I mean face rehabs etc.) Currently I'm having face rehabs 3 x a week and my first skype session (I'm from central Europe) with Jackie Diels.
thank your for your answers and heads up !
-
Wow, Mr. Neuronom, thank you for this subject! I have been wondering whether or not Jackie Diels did Skype sessions, so now I'm so excited that "Yes" she does.
As far as when to start rehabilitation, I'll be eagerly reading the responses to your posts. I have read that you have to wait until there is some tingling, or ability to do something with your face.
Can you get the electric stimulation machine for home use because I live in a very remote place?
Thank you again and the best of luck on your recovery.
-
My surgery was November 27, 2012. My facial nerve was severed during the surgery. I'm happy to say that the nerve regenerated and I began having movement October 31, 2013, It's slow, slow, progress with facial movement and many times it seems like nothing is happening but even if you can't see improvement that doesn't mean it isn't happening. By May of 2014 my face looked completely normal at rest.
I think some are reluctant to post "good" stories because the rate of healing and improvement is so varied and they may feel that it will dishearten those whose improvement isn't as rapid. It's all just a giant waiting game. I'm just past 26 months post surgery and I still have a crooked smile and occasional eye issues. I'm not back to the way I was before the AN and likely will never be, but I take what I can get and tell myself everyday that it could have been so much worse. Just keep plugging along and you will get better.....it may not be the level of better you want, but you'll adjust and live a great life anyway ;D
BTW: my physical therapist says the single best thing I can do to get continued improvement is stretch my facial muscles and keep them moving so they don't atrophy from lack of use.
-
Neurinom, I have been seeing improvements for a couple months on my facial paralysis, and I have a smoothie with protein powder (vegan, organic) almost every day. Maybe it helps.