Recent Posts

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AN Issues / Re: Fatigued, confused, forgetful, and foggy?
« Last post by MarlaB on February 12, 2025, 11:04:53 pm »
Hello, I'm one of the moderators on this forum and I wanted to let you know that I removed the link from your post in accordance with the rules you agreed to. Thank you and thanks for sharing the information.

Marla B
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AN Issues / The issue of contrast with MRI
« Last post by mwatto on February 12, 2025, 10:59:52 pm »
I have read two recent articles re contrast and personally feel that for simply monitoring AN it may be best not to have it (understand might need for diagnosis or treatment though). 1. https://www.research.va.gov/currents/1024-Metal-in-MRI-contrast-agents-may-cause-serious-health-problems.cfm and 2. https://medicalxpress.com/news/2023-02-nanoparticles-rare-earth-metal-mri.amp

We need to advocate for our health.
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AN Issues / Targetting pathways
« Last post by mwatto on February 12, 2025, 10:56:04 pm »
I was told this by Prof Maruto (a researcher into NF2 for many years) a few years ago and this study (although old) again confirms the pathway. There are natural compounds that target this pathway. https://pmc.ncbi.nlm.nih.gov/articles/PMC4218275/
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Post-Treatment / Re: 8 years since AN surgery
« Last post by JLR on February 12, 2025, 06:51:15 pm »
Thank you all for sharing your incredible journeys. We are all warriors taking each day one by one and always moving forward. I know it’s not easy. I’m due for my next brain MRI next month. My radiologist said I can stop the yearly MRIs once it’s the 10 yr mark! Have had yearly MRIs since 2010 when I had the first cyber knife radiation.  And SURGERY 2016. Stay well everybody!
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AN Issues / Re: Fatigued, confused, forgetful, and foggy?
« Last post by mwatto on February 12, 2025, 06:39:22 pm »
Hi I had this post Covid and its very common on my forum for that. I have not found it related to my AN.
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Post-Treatment / Post op side effects 4 months after
« Last post by sarahhamaker on February 12, 2025, 03:02:37 pm »
I had a translab surgery in Oct to remove a 4 cm  AN on the left side.  Since then I have had a weird salty taste in my mouth especially on the left side around the upper gums. I also have times where suddenly my ears, neck and shoulders feel HOT and yet I  may also feel chilled. Anyone else experienced either of these symptoms 4 months after?
Sarah
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Pre-Treatment Options / Re: Long term fasting for stopping/slowing AN growth
« Last post by mwatto on February 12, 2025, 01:35:23 am »
Thhis is interesting Andrew. I belong to a Long Covid forum using fasting for autophagy and healing. I havent tried it as yet. Keep us posted if any effect on  the AN. I was also looking into doing a parasite cleanse and currently am reading up on the glymphatic system re keeping brain healthy (sleep on side pref right for example).
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AN Issues / Re: The Brighter Side of Life!
« Last post by DanFouratt on February 11, 2025, 08:14:13 pm »
Steve,  Thank you for posting on the older stream.  It was great reading and I agree we have great lives.

Dan
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AN Issues / Re: Fatigued, confused, forgetful, and foggy?
« Last post by Bunbitalus on February 11, 2025, 05:42:24 pm »
I guess I can respond to my own post with research I found myself today:

“ Results: Compared with the matched controls, patients with VS exhibited impaired general cognitive function, memory, psychomotor speed, visuospatial ability, attention and processing speed, and executive function. The subgroup analyses displayed that patients with severe-to-profound unilateral hearing loss were more cognitively impaired than patients with no-to-moderate unilateral hearing loss. In addition, patients with right-sided VS scored worse than those with left-sided VS on tests of memory, attention and processing speed, and executive function. No differences were observed in cognitive performance between patients with or without brainstem compression and those with or without tinnitus. We also found that worse hearing and longer hearing loss duration were associated with poorer cognitive performance in patients with VS.”

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Pre-Treatment Options / Re: Long term fasting for stopping/slowing AN growth
« Last post by andrewiscycling on February 11, 2025, 07:03:09 am »
Thanks Don, finished my second 96hr fast last week (added a day).  I am doing this every 3 weeks, and I will say the second time around was a little easer than the first!  I feel great after day 1, and found it gave me more time overall, not thinking about what to eat is liberating in some sense. Day 4 I start to miss eating, and risk muscle atrophy if I go much longer.  I agree the impact of fasting on AN growth are not as broadly studied (or understood) as cancer, and the pathways for growth seem more complex and less dependent on insulin/sugar.  That being said, worst case it does nothing and I’m having surgery under the supervision of the best doctors in the world. Stay tuned!
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