ANA Discussion Forum
Post-Treatment => Facial Issues => Topic started by: moe on February 26, 2009, 09:30:45 am
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I am new to the Forum, new to the state of WA with a very complicated AN story. I am 2 1/2 years post AN removal with complete removal of a vascular 2 x 2.5 cm tumor. The facial and hearing/balance nerve both had to be completely cut to get the tumor. The nerve re-anastomosis (?) during the initial surgery didn't take. (Madigan Army Hospital, Tacoma WA).I had a 12/7 nerve transposition surgery one year ago, which is not "taking" as they would like (University of WA Hospital, Seattle). I have left ear deafness and very loud tinnitus, with left sided facial paralysis. Would like to find someone who has any/all these complications. I am a worst scenario case, and have been plugging along OK. Anyone out there????
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Hi Moe,
Sorry to hear about the troubles. You are not alone, there are others who have had the facial nerve completely cut. NancyAnn, where are you? Kaybo?
I hope one of them comes along soon. Maybe they can tell you about a T3, I'm not sure I know what it is exactly, but apparently it can help.
Welcome to the forum, I hope you find some comfort and support here.
Steve
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Thanks Steve,
Still trying to figure out how this works,glad to see that someone responded so quickly!
Moe
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Hi, Moe. Glad to see you've joined us.
I'm sorry to hear the 7/12 jump surgery isn't working well for you. I really don't understand the mechanics of the whole thing so I can't comment intelligently on why it might not be "taking". Lori had the surgery recently, and she's also a nurse, so she might be able to shed a little light on the situation.
As Steve said, both Nancyann and Kaybo had the T3 and IMO the results have been phenomenal.
Jan
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Hi Moe.
I just sent you a PM!
But I'll give you a public welcome too! ;D
Lori
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Hi there Moe: I'm in almost the same boat as you - my facial nerve was cut & re-enastomosed - I didn't have the 7/12 jump though. Instead, I went the route of T3 surgery (Temporalis Tendon Transfer). Both K & I had it done by Dr. Patrick Byrne at Johns Hopkins Hospital in Baltimore, Maryland. I have before/after pictures at 7 weeks & again at 1 year. (the pictures are under Facial Issues, subject: Post Temporalis Tendon Transfer). This was the BEST surgery for me ! ! I am very happy with the results.
At 1st my ins. (Cigna) said I would have to pay 30% due to out-of network,, but Johns Hopkins repaid me about $5,000. - so I think the ins. co. realized only a handful of dr's do this procedure.
I continue to have eye surgeries, in fact, tomorrow I'm having a surgery to implant a pyrex tube in the inner corner of my eye to stop my abundance of tears from dropping on my face all day (I can't wait ! - my co-workers want to know if we can make lasagna in the tube, they'll put my head in the microwave ! ! a sick but fun bunch I work with !)
I still use a moisture chamber every night & use Refresh PM lubricant several times a day (drops don't work for me).
You're not alone my friend.
Always good thoughts, Nancy
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Hi, Moe ~
I'm sorry to learn about your post-op complications but I wanted to offer you my slightly belated welcome to the site/forums and thank you for posting.
I have no real expertise on the issues you're dealing with but others have and they can, have and will offer advice based on their hard-earned personal experience.
'Plugging along' is sometimes the best we can do but I like to remind folks that with AN recovery, including those that are complicated, like yours, how you are today does not always indicate how you'll be tomorrow.
I wish you continued healing - and better days ahead. :)
Jim
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Hi. I don't know much about the procedures but would think that your next step would be the T3 which several people on this forum have had with huge success. The only thing that I might add is that I am a BIG, HUGE, believer in your outcomes being directly linked to the expertise of the doctor doing the surgery! I might suggest getting away from the medical facilities that are for military personnel not that they aren't good but I would bet that nerve grafts, T3's etc. are not surgeries they do often enough to call themselves experts. If you do the T3 surgery I would most definately do my research and go with a doctor who has done MANY of these like Nancy's doctor. If I was on my last procedure that could be done to help with facial reanimation you can beat your bottom dollar that I would travel around the world to get the BEST surgeon for this type procedure. You may be well aware that you will find many doctors who would be willing to do the surgery for you but be your own advocate because you deserve the best and it is time to get good results after all that you have been through. I also have facial paralysis (slowing getting better). I am traveling 12 hours total tomorrow to Nashville, TN and back home so that I can see an Oculoplastic Surgeon who has more experience with paralysis and eye surgeries than the doctors here in Arkansas. It is worth it to me. So you do the same. Do your homework and go with the doctor with tons of experience in the procedure you are going to have. I can't say it enough.
Good Luck.
Angie
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Hi Moe~
Sorry that I didn't get here sooner - it was "Watch Day" at gymnastics and then I had my Photography class this evening...busy day! I had surgery 13 years ago (I was only 25 - I say "only" b/c I want it to seem like I'm not ancient now!) and then a 12/7 a year later. I did get "some" movement from the 12/7, but not a lot - the most important thing it did was to "re-animate" that side of my face. I guess since it was hooked up to a "hot" wire, it looked more alive again. Since I really didn't have much movement, I JUMPED at the chance for the T3 when I heard about it from Nancy last year. I immediately contacted Dr. Byrne at JH in Baltimore - mainly b/c that is who Nancy used, but it is also my understanding that he pioneered that surgery and was pretty much the only one doing that EXACT surgery at that time. I think that others are doing it now, but obviously no one would have the experience that he does - even though he is YOUNG (& a hottie!). He is the most incredinble MAN aside from being a talented Dr. and surgeon. I could go on & on...and have 1st hand stories about how he went above and beyond...my friend ran into him at Starbuck's last week and he remembered me and all about my case - that was almost a year ago (I know Lori, are we really surprised though, who can forget me? - JK)!! Anyway, I have had them BOTH - 12/7 and T3 so if you have specific questions, I could try to answer them! At any rate, I am VERY PLEASED with the outcome! Does my face look like it did in my wedding pictures before the AN? No, but I had resolved myself to the fact that I would look like I did forever (before the T3) and now it looks a lot better than it did. I figure you just gotta take what you can get! ;D Please feel free to PM me and I can give you a call!
K
PS - What did you mean by worst case scenario? I had it pretty rough too & had a stroke on the operating table, but I figure it could be A WHOLE LOT WORSE than this! ;)
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“Marian the librarian� popping in here … with a link
http://www.hopkinsfacialplastics.com/gallery_facial_reanimation.php
…so you can see photos …
This is the surgery that Nancy (my hero) had to reanimate her face. Nancy (or Steve) do you have the ANA archived links where you have posted Nancy’s before and after photos? Perhaps, Steve, you could help me locate the ones from Kaybo (also a hero!) too and post those links here – on this thread.
I also have met man here, in Oregon, who is in the same boat … and I do not have those old links at my fingertips… and I would like to share these with him too. Moe I think you might find it refreshing to see those links too- as there IS much that can be medically done now-a-days.
As far as I know there is still not an active support group in Tacoma. Our Portland group has a meeting this Saturday- and you are always welcome. Before the winter holidays we had a presentation at OHSU on facial issues… and we had quite a few people come down from Washington State.
DHM
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Don't know if Steve's currently logged on, but here's Nancyann (pictures on pages 2 and 5) http://anausa.org/forum/index.php?topic=5544.0
Jan
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I think the pictures are 2 & 4 - at least on my computer...
K
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May I typed that wrong ::) Oh well, they are there somewhere in that topic :)
I can't seem to locate the before and after pictures of you, Kay.
I know they are on your blog, but didn't you post them on the forum too?
Maybe someone else can find them and give Moe the link.
Jan
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Great! That was fast...
Kaybo- do you have the link of yours before and afters?
These photos are so inspirational for others to see...
I was thinking of printing these up and taking these to our next PDX ANA support group meeting to share with some of the older ANA folks who are intimidated by computers and will not go here- if I give them a link. I am thinking a print out to share at the meeting would really help a few who think their situation is hopeless. (It also might encourage them to go to a computer too ;) )
DHM
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I don't know if I have before & after - I have do have some on my blog. There is a big picture like the thumbnail of Dave & me and then one of the girlies on the "Pictures of friends" thread that Cheri started...I try to look some more...
K
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Thanks for all the responses today. WOW! I saw Nancy's T3 before and after photos. And I appreciate the advice about finding the right doctor for the next surgery. I had the 12/7 at UW in Seattle, so very good surgeon (Rubenstein). He said he just didn't see the result around the mouth. There was some movement around the eye. This was the 12 month follow up, so the 18 month follow up, he will make his recommendation. They can do great things at UW, and I think Tricare military insurance will cover it, if it can't be done at Madigan in Tacoma. My facial paralysis is not as bad as Nancy's. I'll maybe post a pic later.
Thanks again for all the feedback. I can tell you all care about each other.
Maureen
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We not only care about each other, we care about YOU, Maureen.
Nancy is a WOW, isn't she? If you do a Google search for "facial reanimation surgery" you can find all kinds of pictures like hers. I'm amazed at what can be done surgically. I'm at the point now where I think God and time are going to take care of my paresis, but at the time of surgery I took great comfort in before and after shots.
Take care,
Sara
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You guys are too much ! We are all heroes & WOWS ! ! DHM - I think it's so nice of you to help out those who don't have computers (I myself am intimidated by them - I didn't get my 1st one until Aug. '06, so I understand how they feel). Anything we can do to help others is wonderful !
Always good thoughts, Nancy
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I'm enjoying this forum very much and realize what a ride I've been through. I never really had a chance to get support through the whole process and have always wondered, "When do I get my meltdown?" Well, i don't think i'm going to do that but a recap and you'll understand. Bear with me- It was one of those "God you've got to be kidding!" parts of my life.
1. Husband transferred to Bremerton WA Oct 05. I stayed in Corpus ChristiTX with 3 teens so one could finish h school and another starting college in San Antonio. Had been feeling like doo doo for years. Dizzy, almost dehydrated, just recently noticed left sided hearing loss when using cell phone. Tinnitus x 20 years, after an ear infection. Couple of work ups through the years, but never an MRI. You had to be practically dead to have one, as they were new 10-15 years ago.
I decided to ignore the symptoms for many years while being the supportive wife/mother/nurse/military spouse.
2.Hubby transferred-prompted me to go get that hearing test. Ringing worse.
3. ENT doc -not military did audiogram. Had MRI because of left sided hearing loss. February 06
4. No word about the MRI. Figured it was OK. Made my own appt with ENT doc -remember I said civilian doc. End of March 06
5.I'm working, doing home health visits. Stop in for my follow up that I scheduled.
He had not seen the result of the MRI until he slapped it up there on the screen. NO ONE had informed him of a huge AN pressing against this pt's brainstem.
6. I'm sure he just about dropped dead. He said well there's something here and you're gonna need brain surgery. My first response was "Well, no wonder I've been feeling like doo doo!" I'm using nice words.
7. He called in his staff and gently scolded them about not being informed of this MRI.
8. I was in tears, when I left. They said "Have a nice day."
9. Tried to call my husband in WA. He left cell phone at home. Meanwhile, getting ready for a trip to K.C. for my dad's 80th bday. Got a hold of hubby at 10 pm, told him the news, flew to K.C. for the party. Didn't tell anyone other than 2 sisters. Great party.
10. Got the run around with the surgery. First in San Antonio-Wilford Hall. Great surgeon. Kept putting me off on the date. All those active duty people.
Finally said July 5th. HELLO I have this huge tumor smashed against my brain stem!!! Can we do it a little sooner????
11. Found a doc in WA at Madigan Army. My hubby is an occupational medicine doc, and just that week signed off a back to work permit for a woman who had an AN removed by the same surgeon I would have. So basically she was my only support during this time. She emailed me on her ordeal, and how she recovered. I thought no big deal. I'm a nurse- just get this thing out. Didn't really think of the ramifications. Too busy.
12.We had coincidentally bought a new home in WA since I would be moving up in 2 years, so I traveled to WA in June 06, kept the 2 older teens at home who were working. Neighbors were great, sister came for one week. Recovered in beautiful cool WA.
13. Other kid stayed with gparents in Longview, WA.
14. Had surgery June 14 or so. Glad to be alive. Lost 2 pints of blood, due to the bloody nature of the thing. They were amazed I didn't stroke out... (Thanks God).
Hearing/facial nerve cut. Headache from heck for 6 weeks. Went through about 3 bottles of narcs. Finally weened myself off to Tylenol and Motrin.
15. Back to surgery-Day after surgery decision to stitch the eye shut then and there with a pretty cotton ball thing.
16. Tarssorphy a couple of weeks later. Home to TX in 6 weeks with tarssorphy to be a single mom with 3 teens. Did GREAT. Hanging in there pluggn along
17.Couple eye surgeries in San Antonio-friend would drive with me, spend the night prior to the surg. Had tarssorphy reversed. What a relief to have my eye open.
18. Another surgery to put the weight in.
19. Dealing with total facial paralysis. No recommendation to do anything except wait and watch.....????? I started my own routine exercises as per a PT I worked with -home health RN. Worked some. Able to drive/think.Brain intact. Thank God for that.
20. Had Vital Stimulation to see if that would help the droop which it did. All on my own of course, but was able to get Tricare to cover it.
21.OKAY almost time to sell the house!This ordeal is over! NOT>>>>>>
Find out Hubby gets to go to Afghanistan for 6 months-just at the time of our son's graduation from highschool and move. I'm still feeling wobbly certain times of the month, but like I said the brain is intact, and I'm only suffering from the deafness/tinnitus. No headache.
Sell the house/graduate the kid/send him to college and the other one back to college.
Our house sold in one day. (Thanks God). We made a profit (Thanks again, God). I used the proceeds to buy a small place for winter for when we really retire. I'm patting myself on the back.
My brother does the drive from TX to WA in August 07. Hubby back from Afghanistan in Oct 07. Happy home now :) OKay can I have my meltdown yet? JUST now getting on the forum with all this pent up stuff. Would love to write about this in a blog or something or a book, but just don't have the time/energy.
This is the best I can do for now.
Thanks all for listening. I feel better, like this huge weight has been lifted off my shoulder.
I'm patiently waiting to see what the 12/7 surgery will do and then go from there.
Smiles,
Maureen
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Moe,
So what you're saying is the the past few years have been a real walk in the park for you, huh?
My goodness, that's enough to make anyone have a meltdown! I'm surprised you've been able to put yours off for so long!
It does feel good to talk to people who completely understand what you're talking about and feeling. Hopefully you can continue to hold off on the meltdown and get by with some venting every now and then! :D
Lori
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Moe,
You're doing amazingly well, all things considered. I think you should set aside time for that meltdown sometime soon. I feel very bad that you didn't find this group until now--it would have been good support for you. After reading your last post I was so impressed with the strength and courage it's taken you to get to this point. You may have come here for support but tonight, you've helped me. Thanks for that and continued good luck on your journey.
Best,
Marci
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Lori, I can tell you have a GREAT sense of humor! Yep just another day in the life of a AN military wife. You can relate, huh?
The military has no sympathy. When I had my brain surgery in WA, my husband's boss made him take LEAVE time to be with me/Normally, in my husband's work, you just take the time off. He was my rock. I was so short of breath and weak from the loss of blood. He spoon fed me fried chicken livers and fried onions, which I love!!! I was pretty wiped out, and none of it was from dizziness. No blood transfusions either. Good thing I mentioned something to the anesthesiologist prior to the surgery- I do not want blood transfusion unless I'm gonna die. she said "oh these tumors are never bloody." Never say never......
And Marci I'm glad I was able to help you (don't know how but I did). I have been told that I am a trooper, I'm everyone's hero, blah blah blah .I come from a large catholic family with many relatives, so they have been a great support-but really don't understand. You guys do! I sometimes think-I don't want to deal with this every day for the rest of my life -i.e. waking up with squealing in a deaf ear, droopy face, eye, etc. But I keep plugging along and praying. My favorite prayer is the Prayer of Serenity and I am not even in alcohol rehab. It is such a fitting prayer for all. I do saunas (dry) when I can and have started twice monthly facial massage.
Will keep y'all posted.
Part Texan for life,
Maureen
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Maureen,
Make yourself at home, take off your shoes, have a meltdown or vent any time you like. That's what we're here for. :D
Eyes Wide Shut does not sound like a fun way to recover from a surgery to me. Hopefully things will keep getting better for you.
Steve
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Yea, Marcie said I could have a meltdown! I'll just settle for chocolate right now.
Thanks, guy and gals!
Maureen
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Moe: I wanted chocolate so bad today, so my co-worker opened her draw & took out a chocolate bar called 'Emergency Chocolate.'
She got it at Loehmans, it was good chocolate b/c I could taste it ! !
Always good thoughts, Nancy
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Basically, chocolate helps everything. ;D
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Speaking of chocolate, my indulgence is this chocolate that is good for you. It's call xocai and it is very expensive. Has a very high orac value if any of you have heard of that. Made in Belgium, 60 percent cocoa. You can only order it online. I went to a chocolate party one night, and well, I signed up......Have any of you ever heard of it? I never get sick. I know never say never. There are bugs going around all over the place.
Keep healthy,
Maureen
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Wait, I thought ALL chocolate was good for you? ;) At least that's what I tell my husband all the time - it's for medicinal purposes only!
I have heard of that expensive Belgian chocolate, but never tried it. I'm afraid I'd have to start selling off all my worldly possessions to be able to keep buying it once I become addicted to it. I'd be in chocolate rehab. :o
Lori
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And Lori, I would be in chocolate rehab right along with you. Wonder what the 12 step program would look like? ;)
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Marci,
I'm not sure, but with me as your sponsor, I don't think we'd make it past the 2nd step!!
Lori
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The 'healthy' chocolate is the one with the most pure cocoa - the dark, dark chocolate that doesn't have sugar added.
I never liked it before AN surgery, but now, this is the chocolate I can taste ! (I feel like this AN thing has practically
made a Vegan out of me (me, the post HOTDOG QUEEN ! !).
Always good thoughts, Nancy
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:( hi gang i too am new to this site and discussion board, i had surgery in dec 06 (skull based) and was told it was safe for removal (i know no surgery is safe) and was told by physcians i could return to work in about three weeks that was jan 07 i am totally disabled from my job as an elementary teacher and my life has been turned upside down inside out and ever which way. i had complications ranging from balance issues, facail numbness, hearing loss, nerve damage, vision problems and others i dont want to think about. some dont feel like the lone ranger moe just take it one day at a time and thank god for this sounding board ihope someone out there can steer me in some kind of direction
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Reg~
Hi and welcome to this site! I am glad that you have found us here. I am 13 years out from surgery (even though I like to think I am not THAT old - I was only 25 when I had surgery!). I was an elementary teacher too. I went back to teaching, even though it was NOT easy (I had a stroke on the operating table) but I stay at home now - well, I wouldn't say I "stay at home" but I don't go out to a job everyday! ;D I went on to have 3 girlies - I continued to work after the first and then was able to stay home when the 2nd was born. Now I spend all my time running after them! If you would like, you can check out our blog (address below or click on world on left) or I'd love to chat with you! Can you tell us more about yourself and your tumor (size, surgery, etc...)?
Again, WELCOME!
K
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Reg,
There are a few of us teachers who had to make vocational changes since surgery
Here is an old thread you might like to read...
http://anausa.org/forum/index.php?topic=5313.0
I am now assisting in a high school library after being inspired by "jeff". You just have to "keep moving forward" to find out what your other talents and gifts are.
DHM (AKA formerly "4")
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Maureen I read your last post and honestly wanted to cry... I totally understand! There is strength deep down inside of us sometimes we just have to dig hard to find it. That certainly is some test... okay enough thank you ... we know how strong we are.
Maureen you certainly have had a rough go of it. When you said you returned home to be a single mother I thought your husband had left you and I was thinking "Hey what a crumb" then realized as I read on that he was away - thank god! This is a hard enough journey without adding any other stressors.
Nancyanne and K certainly have the best advice, I just wanted to chime in and say hi, welcome you and hope you feel the love on this forum!
Hugs Michelle ;D
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Thanks Michelle. You look beautiful BTW in your photo :)
I'll keep pluggn along.
Maureen
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Thanks Maureen, it is a good thing it is far away and you can't see my wrinkles. ::) Saying that I am somewhat happy to see some coming back on my AN side.
Michelle
Believe ;)