Recent Posts

Pages: [1] 2 3 ... 10
1
Cognitive/Emotional Issues / Re: When anger sneaks up on you!
« Last post by stevehernes on May 03, 2024, 02:55:19 pm »
I think it is a good idea to talk to someone about your feelings
2
Inquiries / Re: AN regrowth after surgery and proton radiation
« Last post by Director on May 03, 2024, 01:46:41 pm »
Hi Michellebelle007,

I'm sorry to read your post about the possibility of another treatment.  The ANA has a regrowth support group that might be helpful for you, and we can also connect you with peer mentors that have experienced regrowth. 

The regrowth group is meeting Thursday, May 9 at 7 pm ET, and you can register here.

https://www.anausa.org/programs/support-groups/upcoming-events


The ANA Team
volunteers@anausa.org
3
Facial Issues / Re: Hemifacial spasms starting 9 years post radiation
« Last post by stevehernes on May 03, 2024, 01:33:29 pm »
Consider reaching out to a different neurologist or a neurosurgical center that specializes in treating conditions like acoustic neuromas (AN) and related complications. They may have more experience with cases like yours and be able to offer additional insights and treatment options.
4
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.
5
Facial Issues / Re: PLASTIC SURGERY
« Last post by Kaci on April 29, 2024, 06:28:51 pm »
THANK YOU!!
6
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.
7
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
8
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.
9
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.
10
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.
Pages: [1] 2 3 ... 10