Author Topic: 4 days post translab questions  (Read 463 times)

kgs123

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4 days post translab questions
« on: November 05, 2017, 05:36:10 pm »
I'm 4 days post surgery (translab, right side) at Duke. Released to home today. They got 99% of the tumor (18x13x9mm) with no facial nerve impact to date.

They said to be on the lookout for CSF leaks. Nothing coming from nose unless I'm eating hot food so ENT said that is ok. I am swallowing a lot but it's more like post nasal drip stuff than what they aid would be like saltwater or metallic tasting (nothing like that). Is this normal for what you all encountered? I realize that the environment at home is different with humidity and cooking in the kitchen, etc - leading to different conditions than were in the hospital.

Balance is coming along. Lots less than what I was expecting for dizziness, though I realize I'm only at the beginning here.

Thanks for the support, all.

ColleenH

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  • Do not fear, for I am with you. Isaiah 41:10
Re: 4 days post translab questions
« Reply #1 on: November 06, 2017, 03:58:27 pm »
It sounds like you are doing just great! Do not worry about the CFL - if it happens you will know. If you are not sure, you probably do not have it. I did have it and you know. It is a steady drip drip drip when you bend your head down. So it is best not to stress about what may not happen :) Keep us posted on your progress. Rest and take things slow.
Surgery date 5/2/2017 @ Vanderbilt Translab approach with Drs. Haynes & Chambless. Love them :)
Success: removed 99.9% of tumor; no facial issues
Readmitted on 5/7/17 for CFL, had a lumbar drain inserted; CFL repair surgery on 5/14/17 and sprung on 5/15/17.

kgs123

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Re: 4 days post translab questions
« Reply #2 on: November 07, 2017, 06:45:42 am »
Thank you so much. I've been so neurotic with this possibility and not wanting to go back under for a fix. This morning I coughed (by reflex) and pain went from just 1-2 but panic went from 1-5. This is crazy stuff. I really appreciate hearing about perspective!

LakeErie

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Re: 4 days post translab questions
« Reply #3 on: November 07, 2017, 04:58:53 pm »
AN surgery involves irrigation of the area and any left over fluid can result in some nasal leaking through the sinus near term. I had a nasal CSF leak and believe me, if you have one, you will be aware of it. Good luck
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

Sailfish

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Re: 4 days post translab questions
« Reply #4 on: November 08, 2017, 11:25:01 am »
I’m three weeks post op from Duke Raleigh.  Drs Cunningham and Zomorodi were awesome and I have no regrets going Translabyrthrine.  I worried a lot the first week and still worry about the CSFL myself.  I’m following all the rules sleeping at the 35% incline and not lifting anything heavier than a coffee mug. 

I’d like to know if there is a point at 4 weeks, 6 weeks, 2 months when the chance of the leak is gone.  Thank you all in advance for sharing your experience. 
6/23/17  3.2cm  Facial numbness and tingling  Tinnitus 2012 
Surgery with Drs. Cunningham and Zomorodi at Duke - upcoming

kgs123

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Re: 4 days post translab questions
« Reply #5 on: November 09, 2017, 10:06:03 am »
Wow, they told you coffee mug? I have been told a gallon of milk (8-10 lbs) for the first six weeks. I lifted milk today.

Dr Francis (Duke Durham) told me yesterday after a week post surgery, that I am pretty much in the clear of CFS leakage. He had me lean forward - nothing flowing. He did say no nose blowing for a month and do my best to not cough. Nice, 44 degree weather here to help that out, ugh. But I think exercising caution forward means that there should not be a set back at this point.

Sailfish

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Re: 4 days post translab questions
« Reply #6 on: November 09, 2017, 09:15:55 pm »
Sorry they said the same about not lifting anything heavier than a gallon of milk but I am trying to improve my odds by not lifting anything more than a coffee mug. 
6/23/17  3.2cm  Facial numbness and tingling  Tinnitus 2012 
Surgery with Drs. Cunningham and Zomorodi at Duke - upcoming