ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: joeelmo79 on March 06, 2009, 01:38:41 pm
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Hello all this is my 1st post. I am scheduled for AN surgery in 3 weeks and I have many questions and any info or personal exp. will be greatly appreciated, I am 29 years old and I am from South Carolina. I will be having my surgery at MUSC. from what I understand they will have to cut my facial nerve and use a graft from my neck. they will also be implanting a gold weight in my left eyelid. I already have a great deal of facial paralyisis to the left side of my face and I dont blink my left eye. They told me I should be able to get about 50% of the usage back out of my face & eyelid. I really just dont know what to expect with the surgery, recovery, or long term. I am just really nervous about the whole thing. I undersand that I will have total paralysis the 1st few months, I am wondering how long and quickly use comes back. just any of your experiences would help a lot. I will be posting up until my surgery in 3 weeks so I look foward to hearing from you all. Thanks,
Joe
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Hi there Joe: WOW ! I'm wondering what size your AN is ? As far as having post facial paralysis, I can help you with this. I exclusively use Refresh PM (sensitive type) for keeping my cornea lubricated - this is the #1 rule when dealing with facial paralysis. Many people can get by with eye drops during the day, but I'm not one of them. You'll find what works best for you. Glad to hear it's only temporary.
I also use an eye moisture chamber at night, the one I use is called NITEYE The Dry Eye Comforter, tel#: 1-800-874-5797, they are nonsterile, 14 per box, & cost about $21/box. Or you can cut saran wrap into a square to fit around the eye & tape it all the way around to make a moisture chamber. I can't stress enough the importance of keeping your cornea lubricated to avoid corneal ulcers. If you use a moisture chamber, don't wear it for more than 12 hours/day - it can become a breeding ground for germs.
I personally never regained movement b/c my tumor really messed up my facial nerve, & I never had a nerve graft other than primary anastamosis, so sounds like your nerve will rejuvenate (YEAH ! !) - I wonder why the doc said only 50% usage back, you never know Joe... could be closer to 100% !
Post op is a killer, there's no getting around it. Some people are actually lucky enough to not have too bad a post op; I personally felt like I was hit by a mack truck !
Balance way off for a few weeks, gets better with time, headaches for 2-4 weeks, really bad fatigue for months... but, you learn to adjust & life goes on !
Well, please ask whatever questions come to mind, we're all here for you.
Always good thoughts, Nancy
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Welcome, Joe ~
I can't offer you specific information based on my personal experience because, although I was diagnosed with a fairly large AN (4.5 cm) and although I definitely had some symptoms, they were nothing like yours. I just wanted to welcome you to the site/forums and let you know that although we're not doctors, we're here to support you in any way we can. I know you'll receive responses to your questions, but you should be aware that others experiences may not necessary mirror yours, in terms of healing time, etc. because we're unique individuals and no AN case is identical to another. However, other AN patients can offer you coping mechanisms and suggest both commercial products and home-made concoctions that might help you endure any problems you may possibly encounter, post-op. Let's expect they'll be few of those. :)
I hope and will pray that your upcoming surgery proves successful and that the facial paralysis you're enduring will soon be alleviated.
Please feel free to post your surgery date (and any other information you wish) on the AN Treatment Calendar - http://my.calendars.net/an_treatments/d01/04/2009?display=M&style=B&positioning=A (http://my.calendars.net/an_treatments/d01/04/2009?display=M&style=B&positioning=A) so others can be thinking of you (and praying for you) when the Big Day arrives. :)
Jim
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thanks for the input, the size is 9x5x5 at the last MRI, at 1st most Md's in my area did not know what they were looking at, they thought it was a meningioma and was not causing my facial paralysiis, but after being evaluated at the medical university the specialist knew exactally what it was and where it was. I am a nurse by profession so I have done a lot of research myself but I know you all that have been through this already have life experience that would be usefull. I am pretty sure that they are going in above and behind my ear for the incision. I plan on keeping on posting from now until my surgery giving updates, and post op to follow my progress and ask for advise. I really thanks you for your posts and look foward to talking to you all. I have been using gel drops in my eye for about 3 months now and restastis cream at night with my pirate patch. also my surgery date is 3/30/09
thanks
Joe
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Welcome Joe from another forum member/nurse! There are quite a few nurses here for some reason.
Well, I guess since you've already been dealing with the facial issues, you won't be in for too much of a surprise after surgery. I guess that can be a good thing. I agree with Nancy that your chances of getting good function back in your face could be better than you think. It's amazing what they can do these days. I'll keep my fingers crossed! I had a nerve graft done at the end of September and I'm already getting quite a bit of movement back.
Good luck to you and I look forward to hearing good news after your surgery!
Lori
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Just wanted to say "welcome", you've found a great resource here.
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It's amazing how much trouble a relatively small AN can cause. Sorry to hear about the facial nerve situation, Joe. I hope something works out for you. There have been remarkable comeback stories on this forum, so there is certainly reason to be optimistic. Welcome to the forum.
Steve
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Have you looked into other options or gotten second and third opinions?
Granted you are already dealing with some issues, but severing of the nerve really wouldn't sit well with me. Especially one dealing with facial movement.
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Hello, I have been thru the same type of surgery. Is your tumor a real facial neuroma or one that is causing damage to the facial nerve. Are you gong to a surgeon who is very AN experienced? 1-2 a week is a good number. Has he done many other nerve grafts?
I had this done 3 yrs ago as did have a facial neuroma. I have NF2 so this was my 2nd surgery on the same side. Other than a longer incision the post op recovery is similar to regular AN surgery and one will have the facial paralysis. My nerve was taken from below the ear and the loss of the nerve makes one have a numb area. In time there is some contralateral nerve growth so less numb. Takes a while though. Living with the paraylsis is not fun but one adjusts more than you think you would. I was told it would be at least 8 mos before improvement and that was about right. It can continue for a long time after also. I did not return to all the way normal as have not complete movement and poor smile but could be worse. I did not do the eye weight. I managed without and did have eye closure return. I still occ have a day where may need some eye drops and always do some gel at night. I forgot one night and it never bothered me but think I do better with it. I always use Refresh Liquigel if needed in the day.
I had no balance issues with this surgery due to the previous surgery. You will be the very tired and usual recovery which takes time. I did end up with a CSF leak 2 weeks later and more surgery as they were using a new colloidal implant and 3 people had leaks. They went back to the older more expensive one then. So I had quite the incision x2 afterwards. I was back to work in 2 mos as a nurse also ina smaller rural hospital. I was also after the 2001 surgery. I did retire last year as the next bout of surgery in April 2008 was on the other side due to almost complete deafness but my mid fossa improved hearing greatly and I did not need a cochlear implant. I have just stayed retired. I am almost 57. I go to the Univ of Iowa for my care and am very happy we have a very experienced surgeon in Iowa.
Feel free to ask any questions and I wish you well! Cheryl R
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thanks for all the replies, I value everyones input. at this point the left side of my face is pretty lifeless, I just cant controll it. I have adjusted to the hearing loss pretty well, with the occasional "huh what was that you said". My headaches have been getting worse over the last couple of weeks, I have about one bad one a day. I just take tylenol and get on with my day. today was a better day, It is warm here today so I got outside for a while. an as for a second opinion the medical university was my second opinion. I first saw a neurosurgion in my area after the an was found, but he did not feel comfortable doing a nerve graft, and sent me to musc to Dr lambert. After getting an IAC view on the MRI then he knew what we were dealing with.
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the size is 9x5x5 at the last MRI
Okay, I'm confused here and need some clarification.
When I first read 9x5x5 I was in shock because from all the symptoms I guess I just assumed you were talking a large AN (as in 9 cm) :o
But then Steve referred to how small it is (as in mm).
It's almost 2 a.m. here and I'm dog tired so maybe I just missed it - but are we talking cm's or mm's here?
Jan
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MM not CM, it is fairly small from what I have read, but from what I understand its all about placement as far as my problems go. If it was not causing any problems we would probally watch it for a while, but it is causing too many problems not to treat it. The facial weakness has progressed over a 10 month period, my hearing loss also. my last Auditory Brain Response test on the left side showed nothing on the left side (the problem side) my right was perfect. That is when my ENT sent me to the Medical University. I also want to thank everyone for the warm welcome to the site and for all the great info so far.
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joeelmo -
I'm very relieved to hear we are talking mms, not cms.
Satman holds the record on the forum for the largest AN (8 cms) and for a little while there I thought you were going to displace him.
There are lots of cases of small ANs causing large problems and vice versa.
In your case I think you are absolutely right in your decision to treat you AN rather than watch & wait.
Jan
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I woke up thinking about this post this morning and had to ask because it is really bothering me. (I have facial paralysis by the way). If this AN is so small why would they cut the facial nerve as many folks have the AN on the facial nerve and sometimes it will peel right off. How do they know that they need to cut the facial nerve before they even get in there to assess the situation? This just doesn't make sense to me. I would hate for them to cut your facial nerve if it can be saved as most doctors do their best to save it. I understand you already have facial issues.......do you have a facial neuroma? It is wild that this little tumor is causing so much trouble but I understand the placement thing......but still.......it could possibly still be removed without disturbing the facial nerve. Some peoples tumors are wrapped up in the facial nerve and the nerve still doesn't get cut.....maybe stretched and they end up with paralysis but they eventually get some recovery. I don't want to discount your doctors but we have to be our own patient advocates and ask LOTS of questions because it is our bodies, our faces and we care more about US than anyone else. Maybe you've gotten all of these questions answered but I didn't see it in any of your posts so I was just wandering. It bugs me because facial paralysis is tough. You already deal with it but once the tumor is removed and the nerve can regenerate then your paralysis will improve. I just believe that some doctors take cutting the facial nerve too lightly sometimes and I don't want that to happen to anyone unless it is necessary.
Angie
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Joeelmo ~
I have to concur with Angie ('CROOKEDSMILE') on the issue of the doctors claiming they'll 'have to' cut your facial nerve - before they perform the surgey that will allow them to see the actual tumor. This would be a red flag for me. Of course, the nerve may have to be cut - but to pronounce it as a given seems problematic. I would seriously question this before committing to anything - and second opinions are always a wise idea.
Jim
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Thanks for the input, That is a good question and I will ask it. I really have no Experience in this area so I guess I just figured that is the way that it was done, but you all say that it is possible for the nerve not to be cut then it I also want to know why also. I will call my Dr. This afternoon and hopefully be able to get an answer. I do know Every Dr. that I have seen has called my tumor something different, From a Meningioma at 1st, Then a neurosurgion looked at it and said it was a Schwannoma then I had another MRI and the ENT said it was a AN or a Facial nerve neuroma, Then my Ent sent me to the medical university to see Dr. Lambert, "Supposedly a world renown expert on these things" that is what I was told, but you know how that is, and he said it had facial nerve involvement and something to do with my inner ear. He said to get to it he would have to cut the facial nerve where the tumor is and either remove the bones of the inner ear or cut them down, and rebuild them, I do remember that. It all is kind of confusing because the cheif resident would tell me part of it and then dr lambert came in and told me the rest. When I saw the facial plastics dr she called it a schwannoma??? At this point all I know is I have a tumor in or near the IAC Either a Acoustic Neuroma Or Facial Neuroma, you've got me on which one. I guess I have been trusting that he is right, Having worked in the medical field now for about 10 years I know Doctors are not always right, but I took for granted that if the Dr is so highly regarded in this state that I probally should listen and not ask questions, but I am going to call his office this afternoon. After talking and reading a lot of things on the site I have a lot of new questions for him. Thanks for the input and keep it coming I really appreciate it
Joe
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Joe,
I'm with the others that it would send up a serious red flag if they're saying the facial nerve would have to be cut and they aren't even doing the surgery yet. That would send up a red flag for me and I would want to know how they know that or why they think that. Let us know what your doctor says.
Additionally, an Acoustic Neuroma is also called a "vestibular schwannoma" because of where it's originated at. The tumor comes from an overproduction of Schwann cells--the cells that normally wrap around nerve fibers like onion skin to help support and insulate nerves. So, when you hear "schwannoma" and Acoustic Neuroma, they're really saying the same thing.
Regards,
Brian
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Joe, I would say there is a good chance it could a facial neuroma from the extent of your facial problems already. I was starting to have problems about a month before my surgery. My surgeon told me ahead that if it was and he wouldn't know 100% until he got in there but had a pretty good idea it was that he would be doing the nerve graft. He would try first to remove the tumor but if needed to sever the nerve would go on to the graft.
I did look up your surgeon as hadn't heard that name and does sound like has the educational background.
I hope you can get your questions answered. Cheryl R
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ok I have some answers now, They may have to cut the nerve but will not be able to tell until he gets into the area, but It is a high possibility. He also said that he classified it as a facial nerve tumor. He did say he would have to shave or move bone in my inner ear and is not sure if I would get use back out of it, It will be a wait and see thing. He did assure me that no matter the extent of the surgery I could only improve being as now I have little to no use of my left side of my face and Limited to no hearing on the left side also. so I guess he does have a point there
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Glad you got some clarification. You can never have too much information. Now I can rest. I tend to worry about people and I didn't like them cutting your nerve before they even got in there to see what all it entailed!
Your last post made good sense. Good luck and keep us posted.
Angie
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Hi Joe,
It sounds like your surgeon is being realistic about your likely outcome, given that you are going in with facial paralysis already. Loss of hearing on one side is pretty typical for AN surgeries, so no surprise there either.
Nevertheless, I insist that you remain hopeful. :)
I think you should put your surgery date on our AN Calendar, see the link below (or one of us can do it). We will be cheering you on when the day comes, and expect you to report back with every nose wiggle and eyebrow twitch afterwards. Life goes on, and you will make some progress and be able to share it with us.
Steve
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Yea, I feel better also since I talked to Dr lambert. He clarified a lot of my questions. I also posted my surgical date on the calendar. I am not really nervous about they type of surgery (since I have been on the forum and read many different things about different peoples Experiences and recoveries) just the fact of surgery in general, as I have never had any type of surgical procedure in my life. I have never been put to sleep or anything, so I really think that has me nervous the most. Basically I have been the type of person who is never sick. Until over the last 3 months going back and forth to DR's appointments I had not missed a day of work in 8 years, well actually eversince I have worked for my current employer. So all this missed time has really bothered me. on top of now knowing I have less than 3 weeks till surgery, but finding this site has really helped a lot, at least now I know I am not alone. Its really Reassuring. Thanks to everyone here.
Joe
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Hi Joe,
Just read the posts. Another RN, AN patient! (I'm a nurse). I'm also a military wife, so that makes me a DW, RN, AN. (Dependent wife, registered nurse).
So great that you have this feedback. Will be happy to chime in when I can.
Amazing how surgeons just nonchalantly mention stuff like "We're going to have to cut the facial nerve, so we'll do a nerve transplant during surgery......"
You're like HUH? Can you imagine how people feel who have no nursing/medical background?
You are way ahead of the game.
Glad to hear it is a mm tumor and not a cm tumor. I had the same thought. OMG that is a huge tumor!
As far as not having surgery before- piece of cake. They put your IV in, give you a little cocktail in it (versed?) and you wake up!
Ask for narcs post op. Sleep through whatever they'll let you sleep through. Will stay tuned....
Maureen
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Plus the time now before surgery is more of the scary time than after. The just not knowing is not fun. You already have some of the scary afters so a bit easier for you. You already know how the right side gets marked pre op and to know your meds if you are on any or allergies.
You may have seen our posts on taking glasses with out a bow on one is needed if you wear glasses. You won't need much in the hospital but a robe and lip balm is good to have.
I am going to be real curious to see what your outcome is since may be the same as my 2006 surgery. Actually it was in March also.
We will be thinking of you. Cheryl R
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Hi, Joe:
I'm pleased to learn Dr. Lambert cleared up these issues for you. Although he may seem a bit negative, he is being ethical by presenting you with the full range of scenarios that could occur, including those no one wants. Such is the AN labyrinth that we have to deal with. However, the doctor's comment that whatever happens, you'll end up better off, does have merit.
Like you, prior to my AN diagnosis and subsequent surgery, I hadn't been a hospital patent for over 50 years (I was 63 at the time) and was less than enthusiastic about the whole thing, especially since I'd read of so many hospital patients being exposed to germs that led to infections. However, my surgery wasn't really an option. I dutifully did as I was told - with the great help of my wife - and although I was discharged as soon as possible (on my 5th day, post-op) I was very relieved to have the experience behind me. Fortunately, my retrosigmoid surgery went well and I suffered no real complications. My recovery was also quite rapid but, in my impatience, not always as rapid as I would have liked, at the time. Today, looking ahead to my 3-year surgery anniversary (June 7th) I can state unequivocally that the hospital/surgery experience wasn't really as traumatic as I had expected, although it probably seemed so at the time. That having been stated, I can assure you that the odds are good that you'll do fine and in a few years from now you'll look back on this experience as a major one in your life, for certain, but one that wasn't anywhere as harrowing as you expected it to be.
I'm pleased that this website and the forums are some help and comfort to you, Joe. That's why we're here. :) Know that you'll be in the thoughts and prayers of many when your Surgery Day comes around. Stay strong.
Jim
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at this point I have stayed very possitive. I am believing I will get some use back, and if not, oh well. I have adjusted pretty well. I am used to putting drops in my eye and sleeping with my patch, and I dont let it get me down. I have taken care of many patients over the years with much greater Deficits than I have, and they could still live their lives and smile. Well I can smile too, just with a big crook in it, but it is a smile none the less. so if I get use back, hey great I will take it, but if not People will get used to my unique look, or I know there are other corrective procedures that can be tried later also. As for post op care, my wife and mother are both nurses also so I am in good hands there. I have a 9 month old little girl that I will be ready to get back in the floor and play with too. So Yea I have plenty of motivation for recovery. I don't want to rush things as I know your body will tell me when I am ready for things. Like playing golf and things. at any rate I have rambled enough right now and I am trying my best to have the most possitive outlook I can for the whole thing, because it could be worse. Like I said earlier the only nervousness I have really Is the fact of having surgery. Agian thanks for the support and info, just taking to people who have been here really helps, and like everyone I have good days and bad with my Symptoms, This really helps the good days to stay around thanks. :-\ Had to use the Crooked smiley face haha
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A lot of us have to use the crooked smiley face! :-\ You're in good company!
I worried before my surgery that my kids wouldn't be able to know when I'm smiling at them, but trust me, they know. And your little one will know when she makes you smile too - and to her it will look more like this.... ;D.
Lori
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Ramble away, it is good to get it out of your brain and on to the forum.
I too am a crooked smile and actually still having problems accepting this, but I smile on the inside. I bet you will get your smile back, I'm having positive thoughts for you.
Maureen :-\
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I have actually come to terms with it, I will do everything in my power to get back what I used to have, But if I only get a little or even none That will be ok, I have other ways to show different expressions without moving oneside of my face. when I try to smile I look goofy, you all probally already know, You over do it on the other side trying to compensate for the lack of movement and it looks real goofy, so I just grin in pictures now. But like I said before It could be worse, I have no real reason to complain. In other news I had a follow up with my regular ENT today, nothing new I just have to follow up with him also after my surgery. I did get my bill for the Surgeon yesterday, I was really suprised that my part was only $1350 the insurance is going to pay the rest of his fee for the procedure, and my out of pocket max is $2000, being that I have had 2 MRI's and 2 CT's since January my max should be met after I pay him, so actually the rest of the Hosptial bill will be paid at 100% so thats one less thing to worry about.
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Joe:
I justed wanted to welcome you to the forum and wish you well in your upcoming surgery. Keep positive.
Sonja
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Hi and Welcome,
I agree with Jim and Angie as well. During my visit with the neuro-otologist, he discussed monitoring facial paralysis during surgery with sensors. He works with the neurologist during surgery to help keep the facial nerve in tact and as functional as possible. You may want to ask your neurologist how facial monitoring is done during surgery.
Molly
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well I guess I have 7 days and counting. Sorry I have been away this last week with out any posts, I had to get things in order before surgery. I hate waiting until the last minute. I am still not worried about outcomes, what will happen will happen. I have been spending time with family, took my little girl to play golf with me for the 1st time this weekend. I know I will be sidelined from that for a few weeks but it will be ok, my game's not that great anyway. like I said before thanks for all the info, well wishing and prayers. I will try to keep everybody up to date after my surgery, I know I will not be home until at least wednesday or thursday, but you never know. oh yea and one other thing I have figured out is that a pollen allergy this time of year with a eye you can't control makes it look like you are crying all the time. That is my complaint of the week lol 8) oh excuse me I have to use the crooked one lol :-\
Joe
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Hang in there Joe! We've had lots of great outcomes lately, and will be looking forward to adding yours to the list! You are spending your time in the very best way possible, with your family. Keep us updated as you have the time.
Ernie
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Ernie, thanks for the Encouragement. I have been reading your posts and sounds like you had an awesome recovery so far. congrats, and I hope to do half as well as you.
Joe
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I am still not worried about outcomes, what will happen will happen.
Joe -
IMO that's just the attitude you want to have going into AN surgery.
There's really nothing you can do but cope with whatever you encounter. It's the path I took and it worked well for me.
No use stressing about "what if's".
Good luck; you'll be fine :)
Jan
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I'm w/ Jan, Joe...your positive attitude will be your best medicine.
Take care - we'll certainly be cheering you on!
Cindy