Recent Posts

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Thank You Mark! Any excuse to get fries and a coke is welcome.  I am pretty sure the fioricet that helped before it was chronic had a ton of caffeine in it so caffeine sounds about right.  Thank you for the suggestions.
Jonathan
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Have you tried salt and caffeine?   A lot of people with chronic migraines find the combination really helps.   They say McDonald's fries and a Coke can work wonders.   Also heard putting your feet in warm water helps.   Worth a shot. 
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I am praying that someone can help with CHRONIC Migraine from AN. Headaches started month after 2015 resection. Fioricet worked. After 5 years headaches became chronic migraine. No migraine meds work. I have been treated by "the best" Neurology Clinic for a year and a half and "the best" University CSF Leak Program over a year as well as 3 other Neurologists over 5 years now. I began doing a lot of research myself last year. I cannot find help. I am on a crazy amount of Diamox and just found Gabapentin to be helpful. These are band aids though, not remedies. Tested negative for CSF Leak in 2023 and and lumbar puncture was unremarkable. Positional pain change/relief, feels like a big wet sponge, hurts turning my head.  I am worse now but they won't redo the lumbar puncture.     I have been treading water with this pain for 5 years now.  Please help as I am on disability now and my pain and symptoms fluctuate so much i can't do anything at all. I can go 2 weeks not too bad and then get pummeled for 2 days with head pain and never leave the bed.   Has ANYONE heard of this? FESS 2013, 2 concussions 1998, 2012. Disc fusion 2017, prob 20 spinal epidural facet branch blocks from 2013 to 2016.  55 yrs.  I am also single so I have NO ONE to advocate for me and I am sick all the time (sounds weak but is true).  I have been reading about food triggers. I eat pretty plain already, no sugar for instance and i don't eat out, but i will reign it in more if it even helps a fraction.  NEW here and feeling very stupid for not looking for forums or associations but glad to know i can speak with you guys now.  NO ONE around me knows ANYTHING about it.  Even after all the trouble.  JB   
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AN Issues / Re: 12mm to 14mm in 3 months
« Last post by Mark F. on Today at 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. 
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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.
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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
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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.
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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.
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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.
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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?
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