Author Topic: Quick survey for my peace of mind...  (Read 3917 times)

Lupy

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Quick survey for my peace of mind...
« on: April 05, 2009, 04:28:58 am »
What was the longest anyone was on any form of steroid - pre or post op?

Me: 3 weeks, in total, pre op, and counting.
“Life is a mystery to be lived, not a problem to be solved” S. Kierkegaard

2.5cm Tumour removed 1/7/2009
Retrosigmoid @ The Royal Melbourne
Debilitating headaches/migraines from 2 weeks post surgery till current.

NancyMc

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Re: Quick survey for my peace of mind...
« Reply #1 on: April 05, 2009, 04:45:31 am »
Why are you on them?
I was on them for five years for inflammatory arthritis but weaned off very gradually when they caused osteopenia.
Watch and Wait since 9/19/01
Increased from 1.1 x 1.9 to 1.9 x 1.9 cm as of 10/27/08
Right SSD, tinnitus, compensating balance
Dr. McKenna at Mass Eye and Ear and Dr. Barker at MGH
Translab April 8, 9 hours, 18 mm Tumor all gone SSD some facial weakness

Lupy

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Re: Quick survey for my peace of mind...
« Reply #2 on: April 05, 2009, 04:59:41 am »
I mentioned in my previous thread - just to deal with some pre op tumour issues, but my op may not be for two months. Ugh! The waiting game is never fun, and steroids don't help the issue! Haha!
“Life is a mystery to be lived, not a problem to be solved” S. Kierkegaard

2.5cm Tumour removed 1/7/2009
Retrosigmoid @ The Royal Melbourne
Debilitating headaches/migraines from 2 weeks post surgery till current.

Kim Zingale

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Re: Quick survey for my peace of mind...
« Reply #3 on: April 05, 2009, 05:22:03 am »
My surgery was on Feb. 9, so I imagine I started on Decadron immediately afterward, and I took my last taper dose on Feb. 21. So I think it was about two weeks?

Kim
Retrosigmoid surgery Feb. 9, 2009 at Johns Hopkins with Drs. Tamargo and Carey.
http://adventureswithmanny.blogspot.com

joebloggs

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Re: Quick survey for my peace of mind...
« Reply #4 on: April 05, 2009, 06:00:11 am »
I was on dexmethasone post-op for six days to bring down swelling around the facial nerve which was causing my eye not to close.  Three days on a full tablet 4 times a day and three day on a half tablet 4 times a day.  Steroid worked and glad I'm off it, didn't sleep very well while I was on it.
Right sided AN 2.7cm at last MRI.  Hearing loss/facial numbness.  Translab scheduled March 11th 2009.  Translab at Royal Melbourne Hospital, Australia successful!  Total tumour removed, SSD, no facial issues, numbness has left the building, balance issues but they'll get better and I'm loving life!

nteeman

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Re: Quick survey for my peace of mind...
« Reply #5 on: April 05, 2009, 06:28:08 am »
My surgery was on January 27 and I was on dexemethesone from then until February 12.

 :)

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

EJTampa

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Re: Quick survey for my peace of mind...
« Reply #6 on: April 05, 2009, 07:05:59 am »
2 weeks of Decadron started a few days after surgery.  Was a decreasing dose though, as others had mentioned.
 
Ernie
-1.3 X 0.8 cm AN in the right cerebellopontine angle extending into the internal auditory canal.
-Retrosigmoid Surgery with Dr. Bartels and Dr. Danner at Tampa General 3/5/2009.
-Had to cut hearing nerve to get "sticky" tumor, so SSD right side.

cindyj

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Re: Quick survey for my peace of mind...
« Reply #7 on: April 05, 2009, 07:09:37 am »
2 weeks of Decadron immediately following surgery...

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

Kathy M

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Re: Quick survey for my peace of mind...
« Reply #8 on: April 05, 2009, 07:45:06 am »
I was on Decadron for a week after surgery, but started having major headaches as soon as I ran out.  After 4 days of steroid-free misery, they put me back on them for another week.  That did the trick!

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

DLM4me

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Re: Quick survey for my peace of mind...
« Reply #9 on: April 05, 2009, 09:11:34 am »
I've been on prednisone for almost a year for a degenerative spondylitis problem in my lower back; my doctors have yet to discuss with me anything about steroids following surgery this week.  This thread has me wondering!


Middle fossa craniotomy 04/08/09, Drs Brackmann, Schwartz, et al, St Vincent/HEI in Los Angeles.

bpham

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Re: Quick survey for my peace of mind...
« Reply #10 on: April 05, 2009, 09:35:33 am »
I was on steriod for 15 days before the operation and 15 days after.  1 months before that I was on for 3 weeks, all for partial facial weakness problem caused by the tumor
1cm AN on the left side.  Surgery was on Oct 2007 at HEI.  Currently having issue with it, may be a CFS leak.  Not feeling too well.

lori67

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Re: Quick survey for my peace of mind...
« Reply #11 on: April 05, 2009, 11:16:00 am »
I was on them for 8 days total, beginning surgery day.  At that point, my blood sugar was so off the wall that it was causing me to pass out and give myself a nice black eye to match the one I had from the actual surgery!  So, we stopped them at that point.  Thank goodness!

And I recall not sleeping very well while on them also.

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.

Cheryl R

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Re: Quick survey for my peace of mind...
« Reply #12 on: April 05, 2009, 11:55:26 am »
For 3 of the surgeries I was only on the IV decadron while in the hospital.     The surgery a year ago I was on some oral also for a few days and quickly on the tapered dose.     Maybe only a week.     
                                       Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Jim Scott

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Re: Quick survey for my peace of mind...
« Reply #13 on: April 05, 2009, 01:34:03 pm »
Steroids in the hospital (4½ days) then a 5 day decreasing dose at home.  No problems that I can recall. 

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.

mk

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Re: Quick survey for my peace of mind...
« Reply #14 on: April 05, 2009, 06:20:21 pm »
I think I can beat everybody in this survey.

I was on prednisone twice, for sudden hearing loss,  for about 6 weeks each time - First two on 40 mgs, and then a very slow taper. Not sure why the ENT prescribed such a lengthy course, since from what I have seen here this is not typical.  ??? Anyway, I didn't have any major problems, other than some steroid high and feeling dehydrated.  Oh, and I had a short IV course right after the GK procedure.

 Marianna
GK on April 23rd 2008 for 2.9 cm AN at Toronto Western Hospital. Subsequent MRIs showed darkening initially, then growth. Retrosigmoid surgery on April 26th, 2011 with Drs. Akagami and Westerberg at Vancouver General Hospital. Graduallly lost hearing after GK and now SSD but no other issues.