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Author Topic: OK since we talk about everything on the board.......  (Read 6930 times)

Jwh

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OK since we talk about everything on the board.......
« on: January 31, 2009, 07:03:30 pm »
I CANT go to the bathroom  >:(  I'm so afraid to strain because of Spinal Fluid Leakage.  I'm on colace and taking Correctol with no avail.  Ughhhh...

How about some suggestions please  ;)

Jen
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5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

wendysig

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Re: OK since we talk about everything on the board.......
« Reply #1 on: January 31, 2009, 07:19:04 pm »
Hi Jen,

I this was a problem for me (and others too).  One of the nurses in the hospital gave me warm prune juice and Phillips Miilk of Magnesia along with the Colace  and the next morning it did the trick for me.  I remember Cheri saying she used Ducolax (possibly a suppository but I think it was the laxitive, not reallly sure) that that did it for her.  Hopefully one of  these will work for you.

Best wishes,
Wendy
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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
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BAHA surgery 1/5/09
Doing great!

ppearl214

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Re: OK since we talk about everything on the board.......
« Reply #2 on: January 31, 2009, 07:34:58 pm »
Oh, where is Captn Deb to talk about the "snake and the mouse"... (for those of you that were here when I had my CK... you'll remember! :) )

When I had my CK, I had the same issue.... my PC to me told warm up prune juice with a tsp of honey for 45 sec in the microwave... worked like a charm. I did it every am.......


As for the "snake and the mouse"... Captn Deb said she was sending me something the week of my CK... a snake to scare the ____ out of me and the mouse for the snake's meal.... I know, I know..... hit her for that! :) 


Try the heated prune juice with honey.....  let us know how it works out.  Hang in there.

Phyl
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sgerrard

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Re: OK since we talk about everything on the board.......
« Reply #3 on: January 31, 2009, 07:41:27 pm »
I have no other suggestions. I just wanted to say thanks for putting a picture with the name, Jen. :)

Steve
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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.

LADavid

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Re: OK since we talk about everything on the board.......
« Reply #4 on: January 31, 2009, 08:06:09 pm »
Well, I don't know if the doctors would recommend this or if it's a cool thing to take.  But there's this stuff called Phosphosoda by Fleet that's taken as a prep before Colonoscopies.  All I can say is that it works -- it really works.
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Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
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MAlegant

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Re: OK since we talk about everything on the board.......
« Reply #5 on: January 31, 2009, 08:16:36 pm »
Jen,
I think this is often spoken about here.  Don't worry; take what they have prescribed, drink lots of water and try to move around when you can.  Exercise will help once you're up to it. And of course, eat the foods you know will help you.   Until then, try not to worry (or think) about it much.
Best,
M
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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.

Syl

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Re: OK since we talk about everything on the board.......
« Reply #6 on: January 31, 2009, 08:35:55 pm »
Jen:
An apple a day, but in your case I recommend two.

Syl
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FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
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JohnnyDiaz

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Re: OK since we talk about everything on the board.......
« Reply #7 on: January 31, 2009, 08:45:53 pm »
How about miralax, that helped me after the colace... Syl is right, Fruit with every meal was a great help... Good to hear from you, we were praying for you and glad to hear that you are on the mend...
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Diagnosed 6/08 - 2.5 cm Left AN
9.5hr surgery 10/7/08 w/Dr. Chandler and Dr. Green Baptist Hospital - Jax, Fl
Post Op Complications - Additional Surgeries 10/12 & 10/13
SSD on Left
7 months later I feel great!!!

nancyann

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Re: OK since we talk about everything on the board.......
« Reply #8 on: January 31, 2009, 09:22:06 pm »
Hi Jen:   My suggestion is to drink more water..... & keep up with the Colace twice a day.
(& never, ever strain).

Always good thoughts,  Nancy
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2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
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right facial paralysis

Dog Lover

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Re: OK since we talk about everything on the board.......
« Reply #9 on: January 31, 2009, 10:16:44 pm »
Magnesium. Worked better and faster than anything.

Cathy
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Cathy
9mm x 3mm Left Side AN
Mid Fossa Aug. 21, 2008
Dr. Gantz / Dr. Woodson
Univ. of Iowa Hospitals and Clinics
No facial issues, hearing saved, I keep active and feel back to normal.

Jwh

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Re: OK since we talk about everything on the board.......
« Reply #10 on: February 01, 2009, 12:37:36 pm »
thanks everyone for your responses.  Nothing yet has helped!  >:(  Ugghhhh...  I emailed my doctor to see if he can prescribe me something.  This was not on my top 10 worry list coming home from the hospital. 

Jen
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5/01  1.3 AN removed at NYU using Retrosig. Approach
2/07  Rediagnosed with Regrowth 8 mm (wait & watch mode)
1/09  1.4 AN removed at NYU using Translab (total tumor removal)

MAlegant

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Re: OK since we talk about everything on the board.......
« Reply #11 on: February 01, 2009, 12:39:02 pm »
It never made it to my top ten, period.   ;)  Try not to worry too much.  How are you feeling, besides that?
M
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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.

Cheryl R

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Re: OK since we talk about everything on the board.......
« Reply #12 on: February 01, 2009, 12:47:28 pm »
The Dulcolax suppository or a Fleets enema sounds like might be needed now.     I know the Fleets is over  the counter but am not sure about the suppository. Just plain glycerin ones are.        I won't go into what we nurses sometimes had to do in the hospital.     
Keep drinking water too.                           Cheryl R
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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

Denisex2boys

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Re: OK since we talk about everything on the board.......
« Reply #13 on: February 01, 2009, 01:04:43 pm »
Hi Jen .... I too had this problem and I was almost 2 weeks before any 'movements' :(  .... I ate X-Lax like crazy and drank prune juice like it was going outta style - and when it did finally kick in - YOWIE - OUCH!  I know it sounds silly but I was getting a little freaked by it all too - it will all happen in time - it was the codeine in the T3's that pooched my system ....  Good luck - -
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- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

leapyrtwins

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Re: OK since we talk about everything on the board.......
« Reply #14 on: February 01, 2009, 03:02:31 pm »
Good luck, Jen.

Colace worked for me - but you've got a lot of great suggestions here.  Personally I'd go (no pun intended) with lots of water and prune juice but the Fleet is also worth looking into.

Phyl -

the Captain's snake & mouse suggestion is classic!  You can always count on Capt. Deb for an interesting post  ;D

Jan

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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
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