Recent Posts

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AN Issues / Re: Scalp burning after mri
« Last post by mwatto on April 30, 2024, 10:43:45 pm »
I feel its inflammation- a cool pack (you get those chemo ice caps but I just press a cold pack to it) I find washing it with cool water helps a lot and when I get the scalp tenderness NSAIDS def help. I got this way worse post covid so I think neuro inflammation. Since I dont get it too often at the moment I feel its improving.
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Facial Issues / Re: PLASTIC SURGERY
« Last post by Kaci on April 29, 2024, 06:28:51 pm »
THANK YOU!!
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Pre-Treatment Options / Re: Decision Anxiety
« Last post by UkulelesAreAwesome on April 29, 2024, 04:41:07 pm »
I needed to read something positive like this. I already had radiation 18 months ago and they're already talking about surgery. It's worse than the anxiety I felt when I was diagnosed. I had treatment options then. There's only one option now.  I'm angry and do not want surgery and don't want vestibular rehab again and am tired of my life being run by a tumor.
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Pre-Treatment Options / Re: Decision Anxiety
« Last post by drumfest on April 28, 2024, 05:04:42 pm »
Thank you for posting this.  My tumor is now growing and all the experts recommend treatment at this time.  I've done much research too, but it's still very difficult which way to go (radiation or surgery).  They both have their pros and cons.  I've had three ear surgeries on the impacted side and don't wish to go through a fourth and most difficult one.  I like the radiosurgery simplicity, but don't want to have dizziness rear its head in the future if I leave the tumor pressing on the adjacent structures.  I currently have a small amount of dizziness in the am hours typically & it gets better after noon.  Lastly, I'd like to save what's left of my hearing as I'm a professional musician & have been for the past 30+yrs.  Very tough decision!  Anyway, thanks again for posting and if anyone would like to reply, please do.

Good luck to all on your journey.
D
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AN Issues / Re: Scalp burning after mri
« Last post by UkulelesAreAwesome on April 28, 2024, 07:44:37 am »
Hi Michele. My scalp has been sore and tender since gamma knife too. Some days I have to be careful not to scrub too hard when washing my hair. I'm not sure if it's maybe at the areas where the frame was attached to my head. The sunburned head started after the latest MRI. I've tried changing shampoo and limiting the use of multiple hair products but that doesn't help. Some days I'm wondering if anxiety san cause it.
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AN Issues / Re: Scalp burning after mri
« Last post by mwatto on April 28, 2024, 12:41:40 am »
My scalp is stil tender 5 years out in the AN area of treatment after CK. I am also wondering if anyone else has this. I  am also uncomfortable sleeping on that side.
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AN Issues / Scalp burning after mri
« Last post by UkulelesAreAwesome on April 27, 2024, 07:12:11 am »
I had an MRI in the beginning of April. My entire scalp feels sunburned since that day. Has anyone else experienced this? If so, do you have any ideas to resolve it? Ice pack helps but it comes back. It's not my first MRI but it's never happened before.
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AN Research / Re: Drug therapy for VS (2021)
« Last post by mwatto on April 26, 2024, 07:41:17 pm »
Thank you Don!
Always trying to understand what drives growth in AN. I am interested in the pathways and then choosing supplements that may target these. I do the same with my diet. Feeling really good at the moment - for a while I thought I had Long Covid too! No more pain in ear and behind eye (high dose PEA and melatonin seem to have helped a lot and a mouth guard at night so maybe this was TMJ). Hearing and balance remain good.
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Post-Treatment / Re: Refusal of Local MD to Treat me Post Op
« Last post by DanFouratt on April 26, 2024, 05:34:36 pm »
As a former Californian I agree with many reasons for loving San Diego.  I am glad you have a path forward.

Good Luck,
Dan
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