Recent Posts

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81
AN Issues / Re: 12mm to 14mm in 3 months
« Last post by Mark F. on July 03, 2025, 05:58:10 am »
Good luck on your surgery.  Wishing you all the best possible outcomes.  I'm sure you probably read my other posts about my surgery, it's the first two days that are the toughest so don't get discouraged by how you feel on those days.  Once you get though them things start looking a lot better.  My neurosurgeon even said that ahead of time.  He said everyone turns a corner starting about the 3rd day and that's when your recovery really starts.  You will be better off without the tumor.  The best part for me so far 7 weeks out from surgery is is that I get to see improvements now in my health both physically and mentally instead of constantly waiting for the next symptom to pop up.   I have been told that I am different now, happier, and I see it too.  I hope that you have a positive experience from it too. 
82
AN Issues / Re: 12mm to 14mm in 3 months
« Last post by sissyn on July 02, 2025, 03:45:54 pm »
 :o UPDATE: I will be having retrosigmoid surgery in 1 week.  Feels weird to actually put that out there but going to have it done on 7/9.   I am actually feeling anxious, nervous and all the feels about it.  Hoping for a positive outcome.
83
ANA Meetings / Patient Education Event in Chicago-Sept. 20, 2025 - REGISTER NOW!
« Last post by Director on July 02, 2025, 08:35:49 am »
ANA Patient Education Event
Hosted by Northwestern Medicine
Saturday, September 20, 2025
8:00 am - 4:00 pm CT

Location:
Northwestern Memorial Hospital
Conference Room L, 3rd Floor
Prentice Women’s Hospital
250 E Superior St, Chicago, IL 60611

Please join the Acoustic Neuroma Association and the team from Northwestern Medicine for a day of patient education, networking, and support. This in-person event will include presentations from distinguished medical professionals working with acoustic neuroma patients, as well as time for Q&A and networking.

Scheduled Topics Include:
Treatment Options
Mock Tumor Board
Facial Physical Therapy
Quality of Life - Balance, Dizziness, Headaches
Ocular Recovery
Hearing Restoration Options
and more!

More information at https://www.anausa.org/programs/patient-event-northwestern
Register at: https://interland3.donorperfect.net/weblink/weblink.aspx?name=E199564&id=782

Questions? Contact stephanierommer@anausa.org

Hope to see you there,

The ANA Team
84
Post-Treatment / Re: Update on post treatment
« Last post by DanFouratt on July 02, 2025, 05:16:23 am »
Great news and thanks for sharing.  Positive stories are always great to hear.
85
AN Issues / Re: New member, symptoms questions.
« Last post by DanFouratt on July 02, 2025, 05:13:53 am »
Mark,  Thank you for this positive update and tone.
86
Post-Treatment / Re: Update on post treatment
« Last post by DodgeAU on July 01, 2025, 09:17:49 pm »
That's very good news, Moselle. It's always great to hear feedback from our members post treatment. These help other members to learn more and decide the right treatment for themselves especially the new ones.
87
Post-Treatment / Re: Cochlear Implant and Single Sided Deafness
« Last post by DodgeAU on July 01, 2025, 09:11:57 pm »
Angela330, I am also SSD on left side and no hearing loss on the right. I am thinking of getting CROS or similar product. Can you please describe the improvements when you are wearing it? Do you see any negatives with that product?
88
Post-Treatment / Re: Cochlear Implant and Single Sided Deafness
« Last post by terisandler on July 01, 2025, 12:00:54 pm »
I just rejoined ANA and am investigating CI for single sided deafness. My good ear is basically good - just some age related high frequency loss. I started considering CI because, despite wearing a CROS and Hearing Aid, I still have trouble problems hearing out of my AN ear when somebody is speaking next to me, no sense of directionality when somebody is speaking and I can't see them, and following group conversations. Just curious what you have found out?  Did you make a decision re: CI?  Thank you.
89
AN Issues / Re: New member, symptoms questions.
« Last post by Mark F. on June 30, 2025, 09:20:49 pm »
Quick update.   Tomorrow makes 7 weeks since surgery.  I continue to improve daily and my doctors even seem surprised at how quickly I was able to bounce back, I would say my balance is just as good now as it was before surgery, and it is still improving.  My double vision is fading.  It's not there all the time now only sometimes, and it is getting noticably better each week.   I wish my taste buds would get back to normal, I am getting tired of things that I know I really like having a strange flavor or no flavor at all.  I know that will resolve  itself too, I'm just getting a little impatient with it.   It is hard to believe that I am now doing nearly everything that I did at work before surgery almost like nothing happened.  I only get unbalanced if I turn my head too fast.  The post surgery fatigue has also pretty much disappeared.  When I first went back to work I only did 4-5 hours a day and I got pretty tired.  I am now full time and do not feel any more tired than normal. 
I still can't hear out of my left ear at all even though the surgeon said they saved the nerve, he says I could still get some of the hearing back once all the swelling is gone, which could take some time.


I update this because when I first started looking on here it was really scary, it seems that nearly all the comments were of things that didn't go right.  I suppose that most people don't come back to post if everything went well, and I just want people out there to get a little hope that yes there are positive stories.  Life may be different now because of the acoustic neuroma, but in the grand scheme of things, I feel very lucky to have had such a quick recovery, and such a positive result.  So I hope I gave someone a little hope and a little relief from the anxiety.  I appreciate all the support I had, and I plan to keep an eye on this site and provide any information or support I can for others.
90
Post-Treatment / Re: Am I Experiencing Common Side Effects?
« Last post by mwatto on June 27, 2025, 07:58:36 pm »
I have had very bad stabbing ear pain AN right side for over 6 years. Was in fact the only symptom I presented with and I still get it. It also wakes me up during the night. The only thing that helps me is medical CBD/CBN (Humacology brand). Nothing else makes any difference. My specialists (I have a radiation oncologist and a neurosurgeon as a second opinion) say stick with this then. It was also suggested I have TMJ teeth clenching maybe caused by the AN so I do sometimes wear a mouth guard at night which I hate but it does help. Its very distressing as the pain comes out the blue and often when I am sleeping. I do work on inflammation, vagus nerve stimulation, some targetted supps like magnesium, and I do neck and eye exercises, gentle face and neck massage with a roller. A gold gel pack on neck before bed. All these help somewhat. I can tell you that it has not got worse but it also has not improved over the years. If I lie on that side it def aggravates it so maybe its pressure or circulatory like a blood vessel impinging. I have had the trigeminal and facial nerve examined in my MRIs but there was nothing going on and my AN continues to shrink. The pain is real and I empathise with you!
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