ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: msswartz on January 20, 2010, 06:35:32 pm
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Hello,
I am new here, just joined the ANA today. I am now 8 weeks post op and I am dealing with it just the best I can. I just returned to work and am glad to be back to work and feel a little bit more normal.
I wrote my Doc today and this was his response.
"It will take 6 months from surgery to see any improvement in your face. There is nothing that will improve the final outcome."
His response may be accurate but it feels so cold and factual. I just hate it. I am a person who needs to do something, be proactive, and all that.... the prospect of just "sit down, shut up and wait" just makes me crazy.
Anyway, that is what I'm being told. Anyone have any comments or a different opinion?
Michael
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Hi Michael,
Welcome to the forum!
Your doctor is actually right but he had a poor choice of words.
If the facial nerve was stretched (or even cut and then reattached) it IS recommended NOT to do anything for at least 6 months.
The nerves need time to settle down and start healing by themselves.
Doing exercises/massage/nerve stimulation will only aggravate any healing down the road, resulting in synkenesis.
(Facial synkinesis is the involuntary movement of facial muscles that accompanies purposeful movement of some other set of muscles.)- I copy and pasted that!
It is VERY hard to sit and do nothing.
As far as the statement about "nothing that will improve the final outcome," that is not necessarily true. After 6 months you can start doing exercises or therapy or whatever depending on how things are going.
Wondering what kind of nerve damage you had. A cut vs. a stretched or splayed nerve.
There is also a surgical procedure, the 12/7 transposition which can help to "jump start" the nerve back up, especially if it is still intact. I have heard that this is actually okay to do within months of surgery.)
More people will chime in I'm sure.
Unfortunately, patience is the order of the day for us. Hang in there- I can totally empathize!
Maureen
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Michael,
Welcome to the group. At my six month appointment with my doctor he told me that my face wouldn't get better. I had no movement at all after surgery, and at six months I had very little movement. Couldn't smile at all then. Suffice it to say that I was devastated when I left the doctor's office that day. My thinking, which was totally unscientific, was different. Since my facial nerve had not been cut, just really battered, I figured that it would come back eventually. It's been 4 years now and I can smile again. Most people wouldn't even notice it right away. It's still not perfect, but I think it looks okay. Still need to improve my blink. That's in my ten year plan. LOL
What I've learned is that doctors don't really know, since each of us are so completely unique.
Best of luck to you,
Jean
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Hi Michael and welcome to the Forum.
Glad to see you became an ANA member ;D
Congratulations on returning to work; it's a great post op milestone.
I did not have facial issues long-term after my surgery, but there are many people who have seen improvements one year or more post op. And as Moe mentioned, there are surgical procedures available - 7/12 jump & T3 - if you find over time that you need them.
My good friends Lori (Lori67) and Kay (Kaybo) had the 7/12 & the T3 respectively and both had wonderful outcomes.
8 weeks post op isn't very long; hang in there and give it some time.
Best,
Jan
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Thank you all for the warm welcomes and positive thoughts and encouragement.
Waiting and doing nothing just seems wrong but I'll worry about taking care of my right eye for now and keep soap out of it, keep my ears clean, try not to bite my face or crash when I drive. That'll keep me busy.
Thanks again,
Michael
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Michael
I didn't have much more to offer but just wanted to say that I am happy that you joined the ANA and this forum. You are not alone in what you are going thru and things will improve over time. I know it so hard to be patient and hope that things will improve but that it what your body needs right now. Keep us posted on how you are doing!
Erin
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Michael ~
I just saw your post and wanted to extend yet another welcome to you. :) I'm sorry to learn of your struggle with facial issues but I have to concur with your doctor and the previous posters that stated six months is the timeframe for simply leaving the facial nerves alone to heal before trying to 'do something'. If there is anything an acoustic neuroma teaches, it's patience.
Jim
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Hi Michael-
Just wanted to say "hi" and reiterate that whole irritating patience thing. I had no movement in the right side of my face initially. Now, it has returned to about 80%, but it takes time.
I think that the issue of when or if to start some sort of facial therapy is very individual. I went to see a speech therapist at about 6 weeks - they also gave me some passive exercises for my face, but mostly worked on getting my p,b,n m back. Ii got a good amount of facial movement back at about 9 months, and went to a facial therapist at about 10 months when I had enough movement back to actually do most of the exercises.
I do have some synkinesis, which is pretty common for those of us who take longer to heal. It seems like the faster your facial nerve gets it's "mojo" back, the less problems you'll have with inappropriate muscle movements.
I know what it feels like to want to be able to do something, but the very best thing you can do right now is just be patient. You may want to visit the bells palsy website - lots of very good information there. http://www.bellspalsy.ws/ (http://www.bellspalsy.ws/)
Hang in there - it DOES get better!
Debbi
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Micheal
The Bell's Palsy website that Debbi mentioned is an essential-it is packed with a ton of good info!
Erin
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Hi Everyone,
Thank you for all the good info.
I must admit that when the doc told me that this "could" happen to me I weighed the risk percentages and figured it was a safe bet since nothing bad ever happens to me. I'd probably be one of the lucky ones since I'm usually ok. I thought.. what could go wrong? After all, it's only brain surgery! But luck was not in my corner this time and now my life and my perspective have been altered.
I do appreciate all the good words and wish you all the best who are dealing with this too.
Michael
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Sorry to hear your doctor's choice of words was so blunt and upsetting. I had a similar experience with my doctor on other issues I was having and it's made it so I don't want to go back to see him again. :-[
I, too, didn't worry much about facial issues pre-op. It wasn't so much that I thought it wouldn't happen to me (facial paralysis), actually since my face was already showing some weakness I was pretty sure I would have some facial issues after surgery.. but I thought "eh, I can deal with a face that's a little droopy", not realizing it's so much more than that. The unblinking eye, having to remember eye drops and straws everywhere you go, trying not to chew your lip up as you eat, little children looking at you and then hiding with their mothers (okay, maybe that's only happened to me :P), not being able to imitate your kids when they make funny expressions, not being able to whistle, etc - it all gets tiring and depressing. So I know where you're coming from. I know it's supposed to be "what's on the inside that counts" and all, but you never realize how much your facial expressions and appearance really affect how others understand you and how you feel about yourself, until something ruins it all!
I'm 4 months postop today and finally feeling okay about it. I don't have any movement yet, but resting tone is improving. Looking in the mirror is less shocking for me, but I hate looking at pictures of myself so I try not to let anyone take them. Hang in there! Here's hoping it gets better for both us of, and soon!
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Hey Micheal-
I too did not worry about facial problems pre op. I thought it would never happen to me. Looking back, my tumor was large 3.3 cm and I was having facial twitching because of the tumor so I should of expected some type of weakness. I woke up shocked but something they cant judge is HOPE. From day one I have been very hopeful for a full recovery- I started eating HOT and SPICY foods which I read activates the facial nerve(not scientific) I'm just shy of the 8 month mark since my surgery and I have decent control of my AN side and can smile so vaguely- closed mouth and open!- But its a smile none the less!! I expect a full recovery and my Drs. concur I should by 12-18 months. I have not used a single eye drop for over four months!! How big was your tumor? Length of surgery? stickyness of the tumor? cut stretched etc? From my own research these are MAJOR factors that determine your overal outcome. My tumor was large but it only took my Drs. 6 1/2 hrs to remove it- They said it wasnt sticky etc.
Darren
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Hi,
Interesting questions... I don't know. I never asked him anything afterward and he didn't tell me anything except "don't worry, you'll recover". So I think I'll send another message and ask him a few pointed questions and see what he says.
Michael
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Hi,
My Doc did not remember the surgery or my tumor very clearly so he sent me the report he wrote at the time.
But you can read the report and see the MRI at the following links
http://www.itsupportnet.com/surgery/tumorpic.gif
http://www.itsupportnet.com/surgery/surgery_report.txt
Any insight or comments are welcome.
Michael
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Hi Michael-
Thanks for posting the links. Always interesting to see someone else's tumor picture and surgical report. The report reads like a pretty straight-forward procedure and good news is that the 7th cranial nerve (facial) tested well throughout the procedure. I suppose that the nerve was stretched a bit during surgery (as was the case with mine) and now the big question is "how long to recovery?" Unfortunately , not a question that anyone can answer with any degree of certainty. It seems that facial nerves kind of have little minds of their own. Mine had a snit and has refused to come back entirely, but yours may be far more cooperative.
I'll keep fingers crossed for you. Keep us posted, okay?
Debbi
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Hi there,
Thanks for the read on that. I am hopeful that it will come back. So far I am just enduring the annoying side-effects of the surgery. I am grateful to be alive tho. There are a lot of ways to die and I am glad that I don't have any of them yet. I only wish that I also didn't have this and I could be more normal. But I am grateful for family who love me, friends who stick with me, a good job and people like you to talk about this with.
I thank you again for your insights and encouragement and wish you and all the best.
Michael
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Hi Michael, thank you for posting your report. I found it very interesting and I realize I should ask for mine! I am in the same position as you. My facial nerve was not severed and stimulated at low voltage post-surgery. The surgeons were very encouraged by this even though I woke up with full left side paralysis. My neuro-otologist told me that the tumor stretched the facial nerve and that removal of the tumor stunned the nerve. The facial nerve is delicate in that it does not care for trauma--the nerve is angry (I wish I had a better, more technical definition!). I am hopefully waiting as well. I am 3 months post surgery and have no movement. Tone is better, which my ENT informed me returns prior to movement. I have tingling and zapping and somedays I feel like my nose is twitching...but it's not visible. I take diligent care of my eye with a Blinkeze eye weight (just got it!) and lots of drops and lube. I only use lube at night now. Please keep us updated. This time is frightening and frustrating for me but I read other's stories about months/years of recovery so I know it can happen, albeit so slowly! Truly, I appreciate facial updates from all users on this site more than they will ever know!
Kay
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Hi Michael.
Welcome!
I do understand how you are feeling. In my AN journey I have come across a handful of insensitive doctor, many great doctors who fortunately have made a mark. A little hope goes a long way. I am able to tell them that now hoping that it may help another patient down the road.
Patience ~ oh it is an ugly word but this is a lesson that I learned - you can not make it happen any sooner. Exercise, eat well, get full body massages and take your vitamins (including a B complex, apparently it helps for tissue regrowth).
We are here for you!
Michelle ;D
See my link below for some encouragement and hope...
http://anausa.org/forum/index.php?topic=8760.0
I just read your operative report and it sounds good to me. Yes, you lost your hearing because of the inability to remove the tumor from the eight CN but it sounds like it came off of the 7th pretty good. It also says that it responded well when tested, which is another great sign that things will come back. Think of your facial nerve as if it is having a little sleep after being through a lot. it is slow to wake up but your report sounds promising to me (I teach kindergarten not a doctor but of course I have a vested interest in understand the reports).
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Michael,
After seeing Michelle's photos again, there is HOPE!
Enjoyed seeing those photos, again,Michelle :). That is great that you have that for others to see.
Hopefully I'll be able to make my chronological photos of my smile coming back this year. (I am getting muscle tone and some movement with acupuncture! Just can't get the upper lip to budge).
Keep truck'n, Michael, it will come back. :)
Maureen
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Michael,
Your smile is beautiful! I am a couple of years out from having Gamma knife radiation. I had a complication which has my smile "broken" so to speak. We do have to look forward. When one door shuts, a window opens!
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Hello all,
Thank you again for your comments and encouragement. I was able to get some more info from my doctor. This is what he said about the 8th nerve
"I don't remember the details of what happened. However, my routine when trying to save hearing is that I cut the nerve once we have lost hearing as indicated by our electrical monitoring. The loss of hearing can occur from manipulation of the tumor, from the trauma of dissecting the nerve from the tumor, or from loosing blood circulation to the nerve. I cut the nerve at that point because it will not recover and it makes removing the tumor easier and safer to remove. I don't think that I have more to say about it than that."
And here is what he said about the 7th nerve
I think that most of these questions have to do with the usual finding in these tumors and are not ominous, unusual or relevant to your understanding. Xanthomatous degeneration and vascularity are just variations of the gross pathological findings. The compression of brainstem is not significant in your case. The trauma to the nerve has to do with the necessary handling during dissection. The exact mechanisms are complex and debated and you might do a literature search of the research and perhaps take some advance course in biology and medicine to understand this. I am not up on the details myself and don't think that they will help you much. The response of the nerve to stimulation indicates that it was intact and working at the end of the procedure and that it will recover. Yes, the threshold to stimulation was higher than usual suggesting some early decrease in function, but I can make nothing more of this. It usually recovers better in cases where it responds well to low threshold stimulation throughout, but time is the only way to see how well it will actually work. The nerve is composed of a bundle of nerve fibres each surrounded by insulation. The insulation stays intact, but the fibres die off. However the cells from which the fibres arise are still alive and grow down the insulating sheath at 1 inch per month needing 6 months to reach their destination ( the muscles). They don't all grow to their original destination and this is why recovery is not perfect. I am going over information that I know that I have discussed before and I don't think that I will be able to help you understand any better in the future."
That pretty much covers it. That along with your very helpful comments is all I know.
Michael
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Just for your amusement.... here are some pics from my surgery
http://www.itsupportnet.com/surgery/op-prep1.jpg
http://www.itsupportnet.com/surgery/op-prep2.jpg
http://www.itsupportnet.com/surgery/op-prep3.jpg
http://www.itsupportnet.com/surgery/operation1.jpg
http://www.itsupportnet.com/surgery/operation2.jpg
http://www.itsupportnet.com/surgery/monitor.jpg
http://www.itsupportnet.com/surgery/suture.jpg
and here is a pic of my loving and supportive wife and me. This is what my face looks like at 2-1/2 months after surgery.
http://www.itsupportnet.com/surgery/lovebirds.jpg
Looking forward and hoping for the best.
Thanks!
Michael
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Who took the pictures? Interesting to say the least.
Sorry your doctor is such a condescending jerk. So you need an advanced course in biology and medicine . . . how about some continuing education in compassion, humility and bedside manner for your doctor instead?
Anyway, there is a really great site about post-op facial paralysis at http://neurosurgery.mgh.harvard.edu/CranialBaseCenter/b95.htm - pay special attention to Predicting Facial Recovery, especially the third point titled "Facial nerve is anatomically intact, stimulates at low voltage, but no movement immediately after surgery" as that sounds most like your situation.
It took a full three months before I saw a tiny movement at the corner of my nose. At six months I had an equally tiny movement at the corner of my mouth. Now, at nineteen months I have "symmetry at rest," meaning that the average person passing me on the street wouldn't notice anything amiss unless I were to smile or say something. You can see from my avatar picture (taken at 14 months post-op) that I have a passable closed-lip smile.
Also, I highly recommend an eyelid weight implant. It improved my life immensely.
Take care,
Sara
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I am going over information that I know that I have discussed before and I don't think that I will be able to help you understand any better in the future."
That pretty much covers it. That along with your very helpful comments is all I know.
My thoughts exactly about the condescending jerk. I felt my blood boil >:( well, excccccuuuuuuuse me doctor!
Be optimistic that that you will get that facial movement back, it will just take time.Your eyes look good. :)You and your wife look great too.
Keep the faith,
Maureen
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Thanks,
I was also really surprised at his tone. I had really hoped for a little compassion and help rather than made to feel as if I was bothering him by asking, that I was somehow being abnormal or bad by worrying about my experience and hoping for some help or asking for information. I told him that it wasn't about him, I was not questioning him or his work, I was just wanting to know what happened and what to expect so that I would know why I was having the specific after effects and what to tell my family who love and depend on me what to expect. That's all. But I should not have to explain that to a man who has 30 or 40 years of experience with patients.
Anyway, that you for understanding and being supportive.
Michael
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so anyway....
(does anyone else that trouble when they do a largish post and the bottom line drops off the bottom and you cant see what you are typing??
i have not been back to facial therapy (i only went a few times toward end of pregnancy) because i am too swamped, and have enough doctors to deal with.
anyway, i will try to get some pictures up soon.
hang in there everyone, times flies fast.
Trish
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Hi Trish,
Nice to hear from you again. Judging by your profile pic, you are looking good. It sounds like the twins are keeping you busy; I hope you still have some time for that cutie Cali as well. ;)
Since I want to see pictures of all of them (and you of course), I will give you some hints. If you can get the pics onto photobucket, like you did with the profile pic, it is not hard from there.
This is what your profile pic on photobucket looks like as a plain link:
http://i806.photobucket.com/albums/yy348/calimama_photo/th_Picture309.jpg
if you click the Image button while composing a post (second one in the bottom row), and paste the link in between the brackets, it will look like this:
[img]http://i806.photobucket.com/albums/yy348/calimama_photo/th_Picture309.jpg[/img]
Or you can find a link labeled IMG Code on photobucket, which already has the img codes in place, and copy and paste that.
When you preview that, and when you actually post it, it will look like this:
(http://i806.photobucket.com/albums/yy348/calimama_photo/th_Picture309.jpg)
Hope that helps.
Steve
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You look great Trish!! Can't wait to see the pictures of your children. I have thought of you often. I see the famous Dr Rutka next Thurs.
Thanks Steve for posting Trish's picture.
Anne Marie
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Hey, Trish - nice to "see" you again! And glad the twins are doing well. I agree with Steve - you're looking good.
Michael, I also felt my blood boiling when I read what your doctor said - he obviously missed the compassion part of med school. I admire you for continuing to push to get answers - keep doing it! No doctor should feel threatened by a patient asking for information. Grrr. Hang in there with the facial recovery - mine has taken a long time, but it continues to improve. I posted some pictures on the Jackie Diels thread I started a few weeks ago - the good, that bad, and scary - mostly good now, though.
hang in there.
Debbi
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We all want some level of understanding from any type of human contact...or even from our pets. Come home and your dog bites you, that's not what you expect. But, we all have different levels of "understanding". If your physician was the patient, his level of understanding would be very different than his lack of human kindness is here...but you are the patient. You were the one that was hurting. I was a cop for eight years, and worked in a drug ridden neighborhood. The people were the worst of the worst. I soon lost any thoughts of compassion for these people (and their victims), and this just carried over into my personal life. I lost my "understanding" of human compassion, and I became a hard and cold person. One day I looked in the mirror, and decided I did not like my cold heart. I quit my job as a cop. I'm sure that a lot of the victims of the druggies in that neighborhood thought I was an awful big jerk...and I was. They wanted me to understand how much they were hurting, because their 12 year old daughter was a prostitute so she could buy heroin, or that their 15 year old son quit school, because he was earning more in one day selling drugs than his dad earned in a week.
Not making excuses for you physician, but he sounds like he is where I used to be. He has no human compassion left in his heart. I would rather be in your shoes (or mine too) rather than be in his. Don't let him drag you into his quagmire. His job has resolved into a scientific exploration of peoples head, rather than healing people. Hopefully he will look in the mirror one day, and change his life.
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Hi James,
You've come a long way. Congrats on having the courage to change your path and rescue your heart and soul. As for my doctor... I don't know him well enough to make that call. His interaction with me is interesting for sure. Other people have posted that he treated them very well. I don't know, maybe he was having a bad day or he reacted to me in particular. I'm not saying it was my fault, but there has to be a reason why my particular experience went that way. But no matter... I am doing good. I see that I have a long recovery ahead and thanks to my question of him and posting the report and stuff here I have learned a lot about my condition, treatment and about the road ahead. So I am able to cope and I feel much better.
Best of luck to you too.
Michael