Author Topic: I made it to the other side, I'm a bit unsteady, but I made it  (Read 10152 times)

kimberly

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #30 on: May 29, 2008, 05:58:30 am »
Hi Melissa!

I was thinking about you last night - wondering how in the world I would have done it with 2 kids that first few weeks of being home.  I take my hat off to all the people here who are parents and have to balance family life with recovery after coming home. 

I too lost a few pounds and nothing tastes right to me, not sure when that turns around but I'm assured it will one day be normal.  Most things taste like ocean water.  The good part of this is that you can eat all healthy foods, some that you may not have enjoyed before and they will most likely taste exactly liike the junk food you used to love!  :)  There are a few things that taste kinda normal to me - they are grapes, oranges, apples, jello, popsicles - it would be interesting to find out what other people have eaten that seems to taste close to what it should.  Let me know if you find some other foods that are worthy of tasting! 

Wishing you the best!

Kimberly


leapyrtwins

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #31 on: May 29, 2008, 06:56:43 am »
Hi Melissa!

I was thinking about you last night - wondering how in the world I would have done it with 2 kids that first few weeks of being home.  I take my hat off to all the people here who are parents and have to balance family life with recovery after coming home. 

It's definitely best to have help - family, friends, neighbors, etc - post op for the first few weeks if you can arrange it.  I know it was great for me to have a family member move in with me and my children; and my children are much older than Melissa's.  It's also an added bonus when the children decide to be fantastically behaved like Melissa's  :)

Ocean water is a good taste analogy - lots of stuff I tried post op tasted like sure salt.  Hopefully this won't last too long Kimberly.

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

calimama

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #32 on: May 29, 2008, 07:30:11 am »
Hey Melissa,

With a 14.5month old daughter and heading for surgery on Monday, I was curious about how you are managing. I dont think Cali is old enough to understand anything (esp why i won't be able to pick her up  :-\
but i expect she will like the bed movement too!   ;)

If i can lose 11lbs, i would be super happy! I still have that extra 5-8lbs post baby that i could happily lose. Trying to look on the bright side!

Trish
Left 2.9cm CP Angle AN discovered Jan 2008. Retrosig surgery June 2, 2008 Toronto, Canada. Facial paralysis and numbness, double vision (4th nerve), SSD. DV totally recovered in 4th month; palsy started to recover slowly around month 7. Had twin boys 13 months after surgery. Doing great.

Kaybo

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #33 on: May 29, 2008, 07:50:50 am »
Trish~
Not a time to TRY to lose weight, but I bet you won't even think about it & it will just come off!!  I would have the protein shakes ready like many suggested!
I will be praying for you and your family!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Sammict

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #34 on: May 29, 2008, 07:59:50 am »
Hi Melissa

It's so encouraging to hear how well you are doing. I too have a little one and i think about how she is going to handle it. But i think kids are alot tougher then we give them credit.

Thanks for the update I hope you continue to have great progress with your recovery. Keep us updated.

Thanks Sam

Yvette

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #35 on: May 29, 2008, 08:55:44 pm »
Congrats! Now, nap, nap, nap!!!

Blessings, Yvette
3cm translab Jan. 2007 performed at Mayo Clinic MN. by Drs. Link and Driscoll. SSD but doing great!

4cm in Pacific Northwest

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #36 on: June 20, 2008, 07:29:29 am »
Can you give us an update?
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Melissa778

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #37 on: June 23, 2008, 05:30:56 am »
Feeling WONDERFUL at a bit over 5 weeks.  Back to work part time.  My vestibular issues have subsided, I really don't mind the SSD as much as I thought I would.  I feel wonderful....no headaches, some minor tinnitus that I didnt' have before, btu other than that I am GREAT.  I go for my MRI in August and they will then decide when to do the Gamma Knife for the remainder of the tumor that they were unable to get.  I worry that because it was such smooth sailing overall with surgical recovery that the Gamma will be my downfall.....Crazy I know :)

Melissa
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Debbi

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #38 on: June 23, 2008, 07:15:01 am »
Melissa-

SO glad to hear you are doing so well and with virtually no complications!  You are a true success story!  Hopefully some of the the folks who are in early days of diagnosis will read your story and be encouraged.

I can't comment on the GK, but I am sure you'll get some good comments from others here who've gone through it.  I can't remember, is it the same surgeon who did your translab for the GK?  Can you talk to him about any specific concerns re post radiation issues? 

Again, Melissa - I am just thrilled to hear about your recovery!

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

leapyrtwins

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #39 on: June 23, 2008, 07:22:39 am »
Melissa -

all I can say is "YEA"  ;D

You sound like you are doing great!  Congratulations!

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

4cm in Pacific Northwest

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #40 on: June 23, 2008, 10:32:47 am »
Yahoo!
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

lori67

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #41 on: June 23, 2008, 12:13:01 pm »
What great news!  You sound like you're moving right along in your recovery.  I hope post-GK goes as smoothly, if it's decided you need it.  It would be even better if you didn't!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

LADavid

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #42 on: June 23, 2008, 07:35:59 pm »
Melissa
Sounds like everything is going great.  Congratulations.  I admire the decision that your surgeons made to leave some of the tumor behind and not damage the facial nerve.  I wouldn't be facing two years of Physical Therapy now if my surgeons had made the same decision.  You may have some downside from the GK but nothing compared to what could have happened with microsurgery from what I have experienced.  Keep up the good recovery.

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

wendysig

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #43 on: June 23, 2008, 08:33:31 pm »
Meloissa -
Im glad to hear you're doing so well.  It's great news that you have no major issues from the surgery.  Hope GK goes well for you too.

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!

lacey7

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Re: I made it to the other side, I'm a bit unsteady, but I made it
« Reply #44 on: June 23, 2008, 09:05:45 pm »
Melissa -
Glad to hear how good you are doing!  I've been following your recovery.
My surgery is in 3 days, and I hope I do as well as you have.
Congratulations.
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.