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Author Topic: Terrible GK reaction  (Read 3858 times)

jsanders1379

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Terrible GK reaction
« on: September 10, 2013, 04:05:41 pm »
Aug.29 (GK 5/7/13) I woke up with horrible dizziness and uncontrolled vomiting-spent the day in the ER..i was prescribed a week of steroids,with minimal improvement (stopped the vomiting. I have been bedridden ever since-cannot walk without assistance,dizzy nauseous all the time...has anyone else had this type of acute reaction? how long did it last? I am so depressed...am supposed to start "vestibular therapy" thursday, but am dreading just the car trip to get there (closest place is 40 mi. away)wishing I could just die & get it over with
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Jeanne
Dx 10-25-2012
5x6x4 mm
3-27-2013 MRI 9x6x6 mm
GK  5-7-13 Swedish Hospital, Denver

LakeErie

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Re: Terrible GK reaction
« Reply #1 on: September 11, 2013, 09:33:08 am »
Did the ER doctor/s specifically state the cause of your current problems was the GK from 3 months ago? Do they know that for certain?
What did your neurosurgeon/radiationist say or advise? Is it possible there is some other cause?
Am sorry you feel so terrible and hope you improve soon.
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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

robinb

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Re: Terrible GK reaction
« Reply #2 on: September 11, 2013, 12:55:07 pm »
Hi Jeanne-

Sorry to hear of these complications. I think they are likely temporary.

I doubt an ER doc would have in depth knowledge of AN's and GK. Surely you and/or he have consulted with your GK team of docs?

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AN Diagnosed 11-2012 right side
13mm x 7.2 mm
Gamma Knife 1/24/13
UPMC w/Dr. Lunsford
Officially a postie toastie!
See my treatment journal at: http://www.anausa.org/smf/index.php?topic=18291.0

PaulW

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Re: Terrible GK reaction
« Reply #3 on: September 11, 2013, 02:30:49 pm »
Hi Jeanne,
Sorry to hear about your problems.
As you probably know Acoustic Neuromas normally start on the balance nerve.

The effect of the radiation can cause the tumour to swell, which can affect the blood supply to the cochlear and balance apparatus.
So balance problems are not unusual, but I must say yours sound pretty severe.

I too had balance problems especially in the 3-5 month range.
But nothing like your experience.
I did walk like a drunk, felt like throwing up, and likened my world to living on an amusement ride

I took motion sickness medication which helped a lot.

I later weened myself off the prescription medication and started taking a natural motion sickness medication which was ginger.

The good news is I don't even think about balance problems anymore, they are gone, but it took 12 months to feel a lot better and 24 months for my balance to be almost back to normal

Hang in there it will get better.

Keep us up to date with your progress.

Definitely get some motion sickness medication for the short term
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10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

nftwoed

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Re: Terrible GK reaction
« Reply #4 on: September 12, 2013, 08:54:49 am »
Hi Jeanne;

   I hope this day is somewhat better for you.
   Would like to share though my situation is not like yours, it has it's similarities. I'm NF-2.
   Apparently your good side did not compensate well, or the AN vestibular nerve was damaged or had strong reaction. If this were me, I'd like to know the condition of the good side. It would take another ENG.
   My experience with severe dizziness/vertigo has been 3 hospital visits of 3 days each and a ride to ER in an ambulance.
   Otherwise, the oscillopsia I have is constant and the nausea and fatigue are constant.
   Through the years, I've read many a situation beginning about 1997. Some have indeed been gut wrenching!
   But in all, when a Mom posted she had an 11 year old daughter with a 5 cm AN and NF-2, and also another daughter who was an identical twin, must say it was hard to find the words that late night.
   The daughter was very ill but came out on top. It took over a year.
   I've encouraged more than once; The goal is life. People can become so beleaguered, they wish an 'easy out' of their misery. Some days, I do.
   During those moments, Jeanne, A Divine nature and those subscribed to this group become your hope. I would ask you not let divinity or we down. Please stay with trying that you slowly recover, or medicine get to the bottom of your difficulties at least for others to learn from them.
   During ongoing life events as yours, I ask for you; "God, be my surety. Strengthen me for each moment I must suffer and allow me a bit of hope, or reconciliation with my situation,".
   If you can, please find a bit of cheer or hope.

   Russ


Quote from: jsanders1379 on September 10, 2013, 04:05:41 pm
Aug.29 (GK 5/7/13) I woke up with horrible dizziness and uncontrolled vomiting-spent the day in the ER..i was prescribed a week of steroids,with minimal improvement (stopped the vomiting. I have been bedridden ever since-cannot walk without assistance,dizzy nauseous all the time...has anyone else had this type of acute reaction? how long did it last? I am so depressed...am supposed to start "vestibular therapy" thursday, but am dreading just the car trip to get there (closest place is 40 mi. away)wishing I could just die & get it over with
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