ANA Discussion Forum
General Category => AN Issues => Topic started by: brasher on February 19, 2007, 12:16:15 pm
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i had a 6.5 cm an removed on 1/23. i have facial paralysis .
i had post op fluid leaking. 3 weeks in hospital, but i am home now.
just thought i would introduce myself.maybe i can help someone.
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Welcome home and glad to read you are doing well. May you have continued healing.
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Hi Tony,
Wellcome to the forum. Glad that you are home now. Being home sure does seem to help recovery. Tell us more about your story. You had quite a large tumor. I also have facial paralysis. It was complete paralysis after surgery, but it has shown some improvement over the last year or so.
Jean
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Hi Tony & welcome !!
WOW !!!! I think you win the BIGGEST TUMOR AWARD !!!
I also have facial paralysis. My facial nerve was reattached at time of surgery(6/19/06 - a date I'll never forget)
I get routine facial EMG's, 1st one in October didn't show any nerve generation,
but the one on 1/12/07 showed 10-15% nerve regeneration; still no movement,
the neurologist said it could take another 1 1/2 years to show movement.
Other people with facial paralysis have movement return (like Jean said), & others get a nerve anastamosis.
Time will tell.
Wishing you a peaceful journey, please keep in touch with us here, Nancy
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Hi, brasher:
Welcome! That was certainly a huge AN tumor you had. I'll bet it's a relief to have that sucker out of your skull! I know my surgeon was very concerned over the size of my AN (4.5 cm) and wanted to operate almost immediately, but it took about 3 weeks from diagnosis to surgery, which, thankfully, went exceptionally well.
I'm sorry to learn you had a CSF leak and had to spend 3 weeks in the hospital, along with experiencing facial paralysis. No fun. However, the paralysis may very likely be treatable and not permanent, as other posters have already indicated. I hope that your recovery is both rapid and complete. Thanks for joining us. :)
Jim
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Hi brasher and welcome:
Holy crap!! I must ask what your symptoms were and what lead to the diagnosis. The pressure in my head was extreme with only a 2.5er in there. I can't even imagine what yours must have felt like.
Glad to have you on and I am very glad you are home. How is your balance?
Good luck in your recovery. Kathy
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Well, I feel a little silly. I had an itsey bitsey tumor compared to yours. ;) I agree with everyone. That was one BIG tumor. Thank God you are still here to talk to us about it. You probably have a lot of knowledge and information for those with large tumors. Keep us posted on your recovery and just know that there is a lot of life still ahead after that ordeal! :)
Jenn
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Brasher, You are quite remarkable! How can we help you?
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hello kathy,
thanks for the reply. my tumor was huge. i had experienced severe headadches (hypocephalus) basically, the tumor was displacing the brain stem and causing csf fluid blockage.
i also had hearing loss. substantial hearing loss; equilibrium issues; and vision problems. my tumor completely removed thru tranlab procedure, so there is good news. i am still trying to learn how to navigate this site, so i hope this even gets to you
tony
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dear boppie,
thank you for the kind words, i do feel pretty lucky and blessed to be here. there are a coulple of things i need help with. one is how to navigate this site and reply to all ofyou nice people, the other question is about hypoglossal nerve anastomy, since i lost my facial nerve with the tumor.
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thank you for the reply nancy,
i am scheduled to have the eye weight procedure done 2/21, day after tomoorrow, any last minute advice?
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Hi Tony:
You are going to LOVE the results from the gold weight.
My only suggestion is that if you're also having the lower lid pulled up/tightened,
let the dr. pull it up to where he/she thinks it should be.
I told my doc not to pull too tight, didn't want it to look too tight,
however, now you can see the white under the iris - wish I had kept my mouth
shut & let him do his thing. Now I may have it pulled tighter at some point.
Best advice is REST, REST, & REST.
Best wishes, Nancy
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Welcome Tony and congrats on successful surgery after such a large tumor. Rest easy knowing that the worst is behind you. I spent a lot of time on these forums in the weeks after surgery. You can certainly help others.
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Hi Tony and welcome. I am speechless for all you have endured and you have such a marvelous attitude (others around here will tell you that's is rare for me to be speechless :) )
Please hang in there... listen to your body if it speaks (ie: fatigue) and so thrilled to see you here and doing so well! Please keep us updated on your progress and know we are here for you!
God bless!
Phyl
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Hi Tony and Welcome. Wow you had a big one! Good luck with your recovery you have come to the right spot for questions and support.
Big hugs! ;D
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Hi Tony :::::waving::::
WOW! You sound marvelous darling!!! Good luck with your recovery and like everyone else REST lots and lots of rest.....
Keep us posted with your progress ~ Sharon
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Tony,
Wow, you are a trooper!
Schwartz did my wife's surgery and he was great. Hang in there and we will be pulling for you. Keep us posted!
Fred
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Hi, Tony,
Congrats on having a successful surgery and best wishes on your recovery! I had 6 cm tumor removed 18 years ago, so you beat me on this one. However, I had more complications: more than a month total time in the hospital, CSF leak followed by an LP shunt, aseptic meningitis. You are doing just marvelous!
Eve
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Hi, Tony,
Congrats on having a successful surgery and best wishes on your recovery! I had 6 cm tumor removed 18 years ago, so you beat me on this one. However, I had more complications: more than a month total time in the hospital, CSF leak followed by an LP shunt, aseptic meningitis. You are doing just marvelous!
Eve
hi eve,
wow, 18 years ago, that was probably quite an accomplishment to just survive something like that back in the 80's.
givin the advancements in technology and experience of med profs. we have much better odds these days. i am sure that you are aware of this. however, i hope you are doing fine these days.
did you have your facial nerve cut? and what manner was your leak happening? mine was coming out of the fat graft and my incision.
i guess us 6 cm ers' are pretty rare, thanks for the note.
tony
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Brasher, Tony...You may have already learned how to navigate by now. But to add a tip...Look are the post today from the Forum Administratior on "Searching this site"
Also, if you check in at the User Info Box at the top you will see "Show unread posts since last visit" click there and you will load the posts to catch up on your reading.
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thanks boppie, i am getting better, starting to figure it out.
by the way, i noticed your surgery was in houston. are you from texas? just curious, because i am a native texan.
tony
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Tony,
Survivng the surgery 18 years ago was not a problem but surviving it neurologically intact was. My brainstem was compressed and rotated and I was becoming very sleepy and tired but just assumed it is my personality along with the latest diet I was on. My facial nerve was spared which is a miracle of all miracles. The entire hospital I think went to my bedside to look at it and it was talked about as if the surgeon accomplished mission impossible. Before the surgery, he gave me a 50-50 chance of saving (or severing it, depends how you look at it). He felt my only chance was if he went extremely slowly and cautiously to avoid pulling it. My husband says surgery lasted 16 hours. There was a tiny piece of the tumor left on the brainstem which now regenerated to a medium sized tumor. I am going to have another surgery in June at SBI (endoscopic approach). Needless to say, I am petrified and would love to keep my facial nerve this time as well.
The recovery was tough. I had a very old-fashioned suboccipital approach which is notorious for its headaches. I had unrelenting headaches accompanied by nausea and vomiting for the next 10 years, after which they stopped. This coincided with the start of the recurrence. The CSF leak was really a pooling of the CSF fluid under the scar. when the drain did not help, they put an LP shunt which is still there and lasted me through 2 pregnancies. I also had difficulty swallowing and aseptic meningitis.
So, that's my story. What were you told about your chances of the facial nerve preservation and how long was your surgery?
Eve
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Tony,
Survivng the surgery 18 years ago was not a problem but surviving it neurologically intact was. My brainstem was compressed and rotated and I was becoming very sleepy and tired but just assumed it is my personality along with the latest diet I was on. My facial nerve was spared which is a miracle of all miracles. The entire hospital I think went to my bedside to look at it and it was talked about as if the surgeon accomplished mission impossible. Before the surgery, he gave me a 50-50 chance of saving (or severing it, depends how you look at it). He felt my only chance was if he went extremely slowly and cautiously to avoid pulling it. My husband says surgery lasted 16 hours. There was a tiny piece of the tumor left on the brainstem which now regenerated to a medium sized tumor. I am going to have another surgery in June at SBI (endoscopic approach). Needless to say, I am petrified and would love to keep my facial nerve this time as well.
The recovery was tough. I had a very old-fashioned suboccipital approach which is notorious for its headaches. I had unrelenting headaches accompanied by nausea and vomiting for the next 10 years, after which they stopped. This coincided with the start of the recurrence. The CSF leak was really a pooling of the CSF fluid under the scar. when the drain did not help, they put an LP shunt which is still there and lasted me through 2 pregnancies. I also had difficulty swallowing and aseptic meningitis.
So, that's my story. What were you told about your chances of the facial nerve preservation and how long was your surgery?
Eve
hi eve,
wow, you have bern thu a lot, bless you!
i was told that facial nerve preservation ocurs in about 90% of translab procedures on tumors 4cm or better. i was also told that only about 10% of the surgeries done per year are that large. ofcourse mine had to be one of the largest ever, taking 13 and a half hours.
they were able to get it all though, so at least i am tumor free.
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Hey there! Welcome! I think we should elect you President of this site! What a whopper!
I hope you will let us know more about your story as it unfolds.
We are in your corner and so glad to have you aboard!
God Bless,
Sue
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Tony,
Being tumor free is the most important thing in the world! HEI has a wonderful record, so when they said they got it all, they really did. Best wishes to you and i hope you feel better and stronger every day!
Eve
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Hi Tony,
What a HUGE AN! Mine was only 1.7 cm and I thought that was plenty big considering the close quarters in our heads. I had retrosigmoid surgery on 2/16/07 and was discharged from St. Vincent Medical Center on 2/21/07. My husband and I stayed at Seton Guest Center and were very comfortable there. My doctors at House Ear Institute were Rick Friedman, Marc Schwartz and Michael Stefan. They were all fantastic. I have no facial problems, my balance is better than prior to the surgery and my only problem is fatigue which I was expecting. Also, I am having some headaches but I take Advil gel and it stops it. No hearing in my right ear but the doctors said give it a month or so and let things settle down and it could come back. This is not a problem when I remember all the other things that "could have" occurred so I am blessed. Take it easy and don't rush your recovery.
Jean in Mississippi
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Yes, Tony, I am from Victoria, Texas. Not a native Texan but I have loved living here for the past 35 years. My surgery was at the Methodist Hospital in the Hermann Complex in Houston. Baylor Doctors!
How is your recovery going? I hope things are looking better for you. Spring is coming, and life is going to be all new for us!
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Hi Tony:
One month out of surgery. You're amazing. Sounds much like Christopher's story, the hydrocephalus, balance issues etc. He's on the forum and he'll probably contact you when he gets time. He is only 22 years old and spent all of last summer in the Intensive Care unit. He had a huge 5+ cm AN and his facial nerve was crushed but not severed. He has facial paralysis too however, in October he had anastomosis done. The jump graft is expected to take a year to work. We haven't seen any facial movement yet.
Chris had the gold weight while in the hospital following the tumor surgery. Nancy is right, you're gonna love the results. Chris was getting soap in his eyes but someone on the forum told him to buy goggles and wear them in the shower. He says it works !
The people on the forum are the best support group. We have all been through alot and have much to share. Glad you found us.
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hello Tony,
My name is Chris. Son of Chrissmom. Your story sounds very similar to mine.
I am 7 months post op and I am running, driving and working 38-41 hours a week.
My therapy really paid off! I am so grateful of them, especially for the way they kept finding new ways to challenge me. Whatever you don't discredit therapy, and be sure to push yourself. Therapy was long and painful, but it was well worth it.
A great advice to me was, if you find something to be hard, keep practicing it. It works wonders for the body. Always challenge yourself!
Patience is the hardest obstacle to overcome. If you can beat that, than you can do anything! I know it sounds kinda sick but it seemed like this stage of hell was an enduring expreirience. I fear a lot less now.
Hope your recovery continues to go well.
Chris
ps- the goggles in the shower was actually my idea. I gotta take credit for something like that!