Recent Posts

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Pre-Treatment Options / Re: Stress and AN
« Last post by v357139 on Today at 06:31:33 pm »
Stress can cause lots of problems.  I also agree the more sleep you can get, the better.  After my surgery I slept quite alot.  I think it helped.
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I flew after surgery from LA back to NYC.  No pain or anything.  I did wear compression socks.  And I got up and walked several times to keep my circulation going.
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Pre-Treatment Options / Re: Another Newbie
« Last post by v357139 on Today at 06:21:09 pm »
Thanks for sharing a great story Angela.  Glad to hear the progress you've made.  I applaud you continuing to work on balance exercises.  I did them religiously for a year after surgery, and I think it really helped.  It can seem quite dark in the tunnel at times.  But there is a light at the other end, and we do make it through.  Thanks again.
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ANA Meetings / ANAwareness Week 2024 is June 16-22!
« Last post by Director on April 18, 2024, 02:03:40 pm »
ANAwareness Week 2024 is June 16 - 22. We look forward to presentations from a variety of guest speakers on AN topics and
helping to raise awareness of acoustic neuroma.  Thank you to our presenting sponsor, Akouos, and all our medical sponsors for partnering with us.

Order a 2024 t-shirt today! https://anassociation.ecwid.com/

For more information and a list of events, visit www.anausa.org/awareness
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Inquiries / Choosing/Interviewing Radiologists
« Last post by Berta on April 18, 2024, 12:32:45 pm »
Hello -
I've been watch and wait for 5 years (Daniel Lee, MEEI) and recently was referred to and had my first meeting with a surgeon (Fred Barker, MGH) for consultation about treatment. At that appointment, he said I could either do surgery or radiotherapy, but it seemed pretty clear that the treatment best for me is radiation therapy. Is there any information on the ANA website specific to choosing a treatment center for radiation therapy and/or a radiation oncologist? Do you go directly to a radiation oncologist for a second opinion or do you go through the surgeon's office first? If you contact the radiation oncologist, how best to determine the best person to seek out? (I've been thinking of seeing if I could get a phone consult with Mayo.) I've seen the questions to ask radiologist and there are lots of videos with surgeons, but I haven't found anything specific to finding/choosing radiation professionals.

Thanks for any advice.

 
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Thanks for your kind words.

The SSHL is very bad, also because I cannot distract myself with music or audiobooks anymore,  but it is also that the other ear seems to be hurting all the time, especially when I block the bad one. I have to live with this idea that I may become completely deaf, and that I find terrifying.

As for the rest, the reactive tinnitus is probably the worst symptom… very hard to live with, I just hope it gets better.

I will try to believe there is light at the end of this tunnel although, to be hones, I don’t see it.
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Post-Treatment / Re: First Follow up after SRS (any)
« Last post by DodgeAU on April 16, 2024, 06:55:10 pm »
Dan, in my case I did the GK in Melbourne, Australia. Since I live in Sydney, I go for the annual MRI here. Then the MRI results are forwarded to the Doctor in Melbourne who performed the procedure then arrange a video call to discuss results. So far it is working for both of doctor and myself.
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AN Issues / Size of tumor increased and ventricles are larger
« Last post by UkulelesAreAwesome on April 16, 2024, 05:02:25 pm »
I'm grateful for any opinions anyone might have. I had gamma knife Aug 2022. My one year MRI in July 2023 showed a stable tumor at 1.6x1x1.1.  I developed mild headaches and facial twitches. I had an MRI April 2024. I met with doctors to discuss it today. The tumor is 1.7x1.3x.09 now. The MRI was done locally and the measurements differed. It also shows mild ventriculomegaly which could happen as we age or could result from increased csf pressure. Ventricles are larger. The tumor is resting on my brain now. I'm supposed to get another MRI in six months to measure the tumor and ventricles again. I was told the tumor could possibly decrease but they feel this is more than swelling and indicates growth. I will know more in six months. They said they can't be 100% sure because its been less than 2 years since GK. Has anyone experienced a  similar situation? I really don't want surgery. They told me it's
 common for the AN to swell three years but they feel its too large to only be swelling.


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Eye Issues / Re: Any other cycclists out there???
« Last post by cherylann on April 16, 2024, 03:38:50 pm »
Thank you for your responses...I was thinking about getting some different sunglasses- maybe motorcycle to keep out the wind! This morning was tough and frustrating!
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Inquiries / Re: Tumor increase
« Last post by UkulelesAreAwesome on April 16, 2024, 07:13:46 am »
Thank you, Michele. It's been less than 2 years since I had gamma knife so hopefully it is just swelling. All I know until my appointment is that the size increased. Thank you for the advice. Where do I find Chang's video?
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