hello, my name is tony, one month out of surgery

[Shrnwldr]

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

[IAHeel]

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

[jerseygirl]

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

[brasher]

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

[Boppie]

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.   

[brasher]

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

[jerseygirl]

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

[brasher]

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.

[sue777]

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

[jerseygirl]

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

[Featofclay]

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

[Boppie]

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! 

[chrissmom]

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.

[Dfcman]

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!