Author Topic: Dizziness and vertigo 5 years after GK  (Read 5327 times)

augustin

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Dizziness and vertigo 5 years after GK
« on: May 03, 2020, 11:17:03 am »
Hello friends, I am writing to you from Spain. This is my case. Eight years ago I was diagnosed with a 12-mm intracanalicular AN of the right ear. Back then I suffered vertigo whenever I put my head on the pillow on the right side, dizziness, tinnitus, digestive problems ... Suddenly a brain storm destroyed my happy life. Until today. It was 2012 and I was 48 years old, now I am 55 and 8 months. In 2015 I was treated with GK in Madrid. The first two years the tumor was dramatically reduced (16.1 / 13.9 / 13.2), 50% of its volume (0.8 cc to 0.4 cc) but the next two MRIs showed growth (14 , 9 and 16,4) .However, my doctor in Madrid tells me that the tumor has not grown, that its volume is still 50% smaller than at the time of treatment. For the past two months I have been homebound due to the coronavirus. I have suffered dizziness and vertigo for the last two days. I wonder if it is due to the cystic degeneration of the tumor or if the tumor has actually continued to grow. My question to all of you is whether it is usual for MRI measurements to indicate growth of diameter but decrease in volume. And also if any of you suffer episodes of dizziness or vertigo 4 or 5 years after treatment with GK. Thanks for reading, cheers and good luck. (originally written in Spanish and translated by Google Translate)
12 mm AN diagnosed Sep 2012
W&W for 3 years ( 16,1 )
GK at Hospital Ruber Internacional, Madrid, August 2015
MRIs 2016 ( 13,9 ), 2017 ( 13,2 ), 2018 ( 14,9 ), 2019 December ( 16,4 x 11,3 ), cystic degeneration, volume reduced 50 % ( 0,8 cc to 0,4 cc )
Gastralgias, dizziness and some good days

qoatip

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Re: Dizziness and vertigo 5 years after GK
« Reply #1 on: May 18, 2020, 10:19:58 am »
Hello Augustin,

Google Translate did a wonderful job going from Spanish to English, we'll see how well it does going the other way....I did not have GK, but I have read on this forum that among other things, a radiation treated tumor does, on occasion, swell before it subsides. I'm not aware of any outcome that is "usual" otherwise. I'm linking an ANA article about radiating tumors here:
https://www.anausa.org/learn-about-acoustic-neuroma/treatment-options/radiation

As far as your dizziness and vertigo, can you do any kind of vestibular PT (you can ask your physician or look on line for some great stuff.) I have also read that vestibular exercises are forever.

Be well, stay well, wash your hands. We'll get through this too!!


Marla B.
2.5 cm AN diagnosed 6/09
Surgery at Virginia Mason, Seattle 2/10/10

augustin

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Re: Dizziness and vertigo 5 years after GK
« Reply #2 on: May 20, 2020, 05:51:11 am »
Hi Marla,
Thank you for your interest and your kind response.
My English is not so bad but Google Translate has improved so much in recent years that it is a real pleasure to translate and then do the reverse translation and see the fun changes that are produced by the different logic of our two languages. It is also a form of learning.
I guess my message sounded very pessimistic and the reason is that I have spent a few weeks with dizziness and imbalance when walking, digestive problems and high blood pressure. I think these symptoms feed back and make me feel confused and doubt the success of the treatment.
In general I should feel lucky. Almost 5 years have passed since my GK and the tumor is under control, I have preserved enough hearing on the tumor side, my facial nerve is intact and every day I ride a bike and drive my car (I never feel dizzy doing this).
But every once in a while I go into a dark phase with dizziness, upset stomach and hypertension or tachycardia. I don't know why it is but it's depressing.
My doctor insists that the tumor has shrunk by 50% since treatment despite the last two MRIs saying that the diameter has increased. In those MRIs only two measures appear, never three, but I find it disturbing that the two that do appear are greater.
My questions are always the same. Is my tumor really under control or does it keep growing? How can I make these episodes of dizziness, digestive upset and hypertension disappear?
Well, Marla and all of you, take care !
12 mm AN diagnosed Sep 2012
W&W for 3 years ( 16,1 )
GK at Hospital Ruber Internacional, Madrid, August 2015
MRIs 2016 ( 13,9 ), 2017 ( 13,2 ), 2018 ( 14,9 ), 2019 December ( 16,4 x 11,3 ), cystic degeneration, volume reduced 50 % ( 0,8 cc to 0,4 cc )
Gastralgias, dizziness and some good days

MarlaB

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Re: Dizziness and vertigo 5 years after GK
« Reply #3 on: May 20, 2020, 08:09:49 am »
Yes, this is me, the same person, I have two profiles because this one I am writing from is actually my Forum Admin profile, and I was erroneously in my original profile cleaning up some old drafts and that's hopefully not going to confuse you....

anyway...

ANA is currently promoting ANAwareness week by presenting a whole boatload of content. Here's the link to the webinars currently available to screen, and one is on balance and vestibular therapy.

https://www.anausa.org/anawareness/anawareness-week-presentations

I hope you find it useful! And keep reaching out and searching this forum for answers. I wish you the best.

Marla B