Author Topic: Not so slow growing - Newbie  (Read 164 times)

lorrainesg

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Not so slow growing - Newbie
« on: February 05, 2019, 02:44:47 pm »
This is my first post.
I am 66 years old and live in Vancouver, Canada

I noticed hearing loss on one side so I went to my GP.  After hearing tests, I was sent to an audiologist and then for an MRI. July 2. I was diagnosed with an AN that was 1.4x 1.7 x 1.8cm. I was told to "watch and wait" by October I was back at at the audiologists because there had been a dramatic increase in symptoms.

1. Double vision - had to stop driving
2. Balance issues
3. Terrifying episodes when out of feeling totally disconnected with reality (or VERY drunk)
4. Tongue feels burnt, things taste odd and lips and mouth hurt  Hearing loss more profound - test proved that, I can live with it
6. Ringing - bearable

The Audiologist reluctantly agreed to another MRI, but he said it would "probably show no difference".  By the time I got it done it was Dec. 18th and the AN was now 2.0 x 2.5 x 2.1cm. He has passed me on to Dr. Westerberg and Dr. Akagami who I understand are the best.  It has been over a month since my referral and I still have no appointment with Dr. Akagami and only managed to secure one with Dr. Westerberg by calling his office.  I understand it is supposed to be slow growing and no one seems to feel any urgency, but I feel as if I have been left hanging.

My vision seems to have settled down a bit, but I still feel that I am not processing things as well as I should, I have to look at things for longer to work out what they are. I have done a bit of driving, but am not feeling very confident.

My balance makes me feel like an accident waiting to happen.

The "drunk feeling" still happens, but I seem to be less frightened by them.

I would appreciate any suggestions, or commiseration :)

gary.s

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Re: Not so slow growing - Newbie
« Reply #1 on: February 05, 2019, 04:27:09 pm »
Hi lorrainesg,

My tumor became a fast growing one also, after about one year on watch and wait. Mine grew about 5 mm. in 6 months and I decided to have Cyber Knife radiosurgery. My neurologist told me that the watch and wait time was over. The symptoms were getting worse as the tumor grew, and I did not want them to continue causing additional problems. My symptoms are very similar to yours and I am a couple of years older than you. As long as the tumor is under 3 cm. radiation is usually the prescribed method, especially at our age. You really need to talk to a neurologist to find out what your options are. Additionally, there is a lot of valuable information on this forum, and it has been extremely helpful to me and many others. But for now, take a deep breath and try to relax.

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018 at Barrow Neurological Institute, Phoenix, AZ
9/2018 hearing aid Phonak Audeo B and Phonak Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm

MarlaB

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Re: Not so slow growing - Newbie
« Reply #2 on: February 05, 2019, 05:05:40 pm »
Hi Lorraine! I live just south of the border from you in Bellingham! Let me know if you ever get down this way..we get up to BC a few times a year. It would be great to meet you in person!

Drs. Akagami and Westerberg are awesome. I met them many years ago, and if I lived in Canada, they probably would have done my surgery...

I had symptoms for years before I was diagnosed..so trust me when I say your body can learn/be trained to compensate...use walking poles, hang on to walls, friends, chairs..whatever to keep you upright.

Mostly, be patient. You are not alone! (if it's hard to read and/or type, use a speech to text or text to speech program...)

lorrainesg

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Re: Not so slow growing - Newbie
« Reply #3 on: February 07, 2019, 05:57:20 pm »
You really need to talk to a neurologist to find out what your options are.
My frustration is that I do not seem to be able to talk to neurologist! Referral, but no appointment yet - sigh.

Thanks for your support.

Maria B - Bellingham is out of the question at the moment. A trip there was the final straw for my driving as on the way home I was seeing a second set of white lines, crossing the freeway lane - not a fun trip.  If I can get this sorted out, then a meet-up would be great.

jami

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Re: Not so slow growing - Newbie
« Reply #4 on: February 09, 2019, 01:24:16 pm »
HI Lorraine,

(A former Seattlite, with great love for Vancouver!)

It felts like it went very slow for me too. I called the doctors and let them know I had a LOT of anxiety (i did) and asked if they could schedule something ASAP. I had to do it for each of my referrals, and it took multiple calls. The us system is different than Canadian, but dont be afraid to make those calls. In retrospect, I wish I had called & asked more questions through the whole experience.

Lots and lots of walking (even when we look a bit drunk) helped me manage the time between diagnosis and surgery.

Jami
Jami
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Vestibular schwannoma, 2.7 x 2.2 x 2.1 cm
Surgery 8/12/18 @ UNC Chapel Hill
Removal of rt auditory and balance nerves + 98% of tumor after 10.5 hours of surgery, which is a good thing!

 


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