Author Topic: Marci's (MAlgent) Surgery Update  (Read 18340 times)

Debbi

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Re: Marci's (MAlgent) Surgery Update
« Reply #60 on: July 25, 2008, 09:33:53 am »
Good suggestions on the pillows.  Anne Marie, I still can't sleep on my expensive, memory foam pillow at night (rats!).  I've found that equally expensive down (not feather) pillow works best for me.  My incision is numb, but my neck still gives me trouble. 

Heat, massage, a good pillow...and time...

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Jim Scott

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Re: Marci's (MAlgent) Surgery Update
« Reply #61 on: July 25, 2008, 12:39:01 pm »
Hi, Marci:

Thanks for the updates, they're very encouraging. 

Your four-hour surgery and two-day hospitalization certainly put you in the Top 5 for shortest surgery/hospitalization.  That you have no hearing loss or facial nerve damage is fantastic.  I'm so glad for you!  I pray your recovery will continue to be as rapid and successful as your surgery.  :) 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

MAlegant

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Re: Marci's (MAlgent) Surgery Update
« Reply #62 on: July 30, 2008, 10:49:18 am »
Hey all,
Went to the doctor's--they took out the stitches and gave me the green light to do whatever whenever I feel up to it.  One interesting fact--I asked about the "whooshing" sound inside my head and the nurse said it was probably CS fluid sloshing around. I thought that was pretty cool.  All this time I thought it was the voices inside my head speaking as one.  Who knew?  I am pretty tired from the trip so I think a nap is in order.
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

sgerrard

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Re: Marci's (MAlgent) Surgery Update
« Reply #63 on: July 30, 2008, 07:11:57 pm »
Sounds good - not the whooshing, the recovery. :) The whooshing could be tinnitus, too. Time will tell. You sound like you have made a fast recovery. Do take it easy for a while, your body may not be up to "whatever whenever" right away.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Kate B

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Re: Marci's (MAlgent) Surgery Update
« Reply #64 on: July 30, 2008, 07:53:46 pm »
Marci--Wow! Your recovery is amazing.  A nap is well-deserved. 

Debbi- For the first six months or so I remember my head being tender and not being able to lay on my surgery side. That did go away for me. I hope it does for you too so you can get back to your preferable pillows:-)

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

MAlegant

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Re: Marci's (MAlgent) Surgery Update
« Reply #65 on: August 03, 2008, 01:05:00 pm »
Steve,
I'm pretty sure the whooshing is a type of tinnitus.  It has stayed with me and it gets worse when I'm tired and so forth. My hearing is a bit wonky, but I have a follow-up with the neurotologist and will see. They did an audiogram before surgery so I imagine they will do another to compare them.  Now if I could just stop biting my lower lip!  I can't feel it but I keep on doing it.  Only becomes a problem when the blood starts running down my chin, which I can't feel either.  It has been entertaining for visitors, however!
M
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Debbi

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Re: Marci's (MAlgent) Surgery Update
« Reply #66 on: August 06, 2008, 01:31:23 pm »
Hi Marci-

Yes, isn't that lower lip biting thing fun?? :P  I made the mistake of buying a sandwich when I was out running errands today - I ended up with a lower lip, lettuce and tomatoe sandwhich.  I don't recommend it. 

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

LADavid

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Re: Marci's (MAlgent) Surgery Update
« Reply #67 on: August 06, 2008, 02:28:26 pm »
Way to go, Marci.  Like Jim said -- you're one of the record-setters here.

And Debbi, I do well remember those lip, tomato and lettuce sandwiches.  It does get better -- although I still chew into my tongue.  From what I recall, eating and my eye were the biggest frustrations I had for the first 4 months.  And it is funny that you mention the sleeping thing.  Only recently have I started sleeping on my AN side.  Of course it could have something to do with turning my deaf ear toward my noisey neighbors.  A convenience of SSD.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Debbi

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Re: Marci's (MAlgent) Surgery Update
« Reply #68 on: August 06, 2008, 02:47:36 pm »
Funny about the sleeping thing - I actually find it very comforting to sleep on my "good" ear and tune the world out.  I find that I am sleeping more soundly now than ever before and I think it is becaue I can't hear much of anything.  I was talking to someone the other day about this and she described it very well as feeling like she was in a cocoon! 

And, yes, I'll be glad to see the end of the lip sandwiches one of these days...  ;)

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

MAlegant

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Re: Marci's (MAlegant) Surgery Update
« Reply #69 on: August 06, 2008, 06:53:09 pm »
All,
Followed up with my doctor Tuesday and all is well. He won't check my hearing for three months but otherwise is hopeful that some if not most of things I'm experiencing with the right ear and facial numbness will resolve. They are very pleased with my recovery (reminded me that the tumor was huge and that had it grown it would have caused serious problems) and encouraged me to be patient.  I have to give it up to a year to see what is permanent but I can start running again in another week.  That made me extremely happy. (Though right now I can't even imagine running.)

I posted this on my recovery thread but thought I'd put it here as well.

I went out again today for more errands (also walked 2 miles) and think I have found my current limit.  Extreme fatigue has set in so my husband tells me I'm grounded tomorrow--no running errands, no visitors, a day of rest and reading.  Yes, Jim, you were right, I was pushing too hard. Tomorrow I will take it easy and then try to be more attuned to what I can and can't do yet.  I blame this all on being a "baby boomer".  It's not my fault, it's generational.

(Writing 100 times, I will be patient, I will, I really will.)
Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Kate B

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Re: Marci's (MAlgent) Surgery Update
« Reply #70 on: August 07, 2008, 06:19:33 pm »
Great news Marci! 
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

wendysig

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Re: Marci's (MAlgent) Surgery Update
« Reply #71 on: August 08, 2008, 07:01:47 am »
Hi Marci,
I think you will wn the prize for most amazing recovery!!  I know you wore yourself out, but you walked 2 miles, WOW!  I walk 5 or 6 blocks and am proud of myself.  You are amazing!  Try noit to push too hard though or your body will push back as it has.  As everyone says patience is the key and I know this is easier said than done, sometimes I'm none too patient myself.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MAlegant

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Re: Marci's (MAlgent) Surgery Update
« Reply #72 on: August 08, 2008, 07:10:06 am »
Hi Wendy,
Thanks. I hope your backaches are improving.  It seemed that was the only thing really holding you back.

Have you or anyone else had issues with sleeping?  I go to sleep on my non-AN side but by morning I'm in pain and on my AN side, but the pain is on the other side.  Does this make sense?  Once I right myself the pain goes away but of course by then I'm awake and it's too early.

Marci
3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

wendysig

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Re: Marci's (MAlgent) Surgery Update
« Reply #73 on: August 09, 2008, 09:35:32 pm »
Hi Marci,

I have had the same experience but not every night.  It takes forever to get back to sleep when it happens even though the pain is gone --it seems to wake me up  just enough to make going back to sleep, or getting into a peaceful sleep difficult.  LIke everything else, I guess this will improve with time.

Wishing you a peaceful night's sleep,
Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!