Recent Posts

Pages: [1] 2 3 ... 10
1
Hi Jackysue,

The Foundation is a separate organization. A quick internet search will give you the contact information for the physician you are looking for.

Please reach out if we can be of assistance. 

Best regards,

The ANA Team
melanie@anausa.org
2
For those in the 'watch and wait' status / Re: Diagnosed with VS , What to do
« Last post by DodgeAU on November 05, 2025, 10:16:05 PM »
And147159, welcome to the best AN community! I had similar AN size like yours when first diagnosed. I decided to wait and watch for three years. My AN has tripled in size after 3 years and decided to go for GK treatment. So far the treatment has worked really well for me and my AN is now under control, continues to shrink in size. It's okay to wait and watch but please be mindful of the growth rate after few MRI's. Most of us are lucky to find out AN while still small in size as we have plenty of options. In my case, I should have taken action/treatment much earlier although I had enough time to decide what treatment was best for me. I'm really glad I found this community people are really nice and helpful. All the best and keep us updated with your progress.
3

It's our understanding that the Facial Paralysis & Bell's Palsy Foundation is not currently active. You can still find some helpful links and information posted on their website, however.

Please reach out to Melanie at the ANA for facial resources, including the ANA's facial support group.

Best regards,

The ANA Team
melanie@anausa.org

I am very curious about this...Is Dr. Azizzadeh's office not open anymore? 
4
AN Issues / Re: Second surgery-HELP
« Last post by mwatto on October 31, 2025, 08:08:14 PM »
I read this today and was wondering if medication/ chemo might help this time? Here is the link to show your specialists : https://academic.oup.com/noa/article/6/1/vdae107/7697688
5
Headaches / Re: Sex / orgasm headaches & dhiarhea headaches - post op
« Last post by greenamw on October 31, 2025, 06:29:50 AM »
I've actually experienced mild headaches after sex a few times, especially when I was stressed or recovering from illness, but nothing as intense as what you're describing. It always freaked me out, but for me, drinking water and lying down in a dark room usually helped. Diarrhea-related headaches are something I had post-gastrobug, probably from dehydration, but never both together or as severe as you mention.
6
AN Issues / Re: Second surgery-HELP
« Last post by DanFouratt on October 30, 2025, 03:28:35 PM »
Sorry to hear your story and I cannot offer advice but you are in my thoughts are prayer.  Good luck on your journey.
7
AN Issues / Second surgery-HELP
« Last post by nattyc21 on October 30, 2025, 09:51:13 AM »
I had a translab surgery in October of 2023(3cm tumor).  Then I went through Gamma Knife in April 2024 for the residual tumor.  The tumor is starting to grow and it is causing symptoms (currently it is 1.2x1.1x1.2).  I have have been told to do a second surgery.  I am curious about those of you that had a second surgery.  What was the recovery like? easier? harder? They are debating between a repeat translab vs a retrosigmoid/parial craniotomy.  Any advice would be great! Thanks everyone! Keep fighting!
8
Hi all! Hopefully people still lurk on this thread...

I am recently diagnosed - 2.5x2.6x3.4cm AN on the right side. I am Active-Duty Air Force and looking for some advice for dealing with Tricare and MTF's.

I was told by my case manager that I could get a referral to a civilian provider, however I would not receive any travel pay unless I followed a few steps which basically amount to:
1) Get a referral to an MTF, which would probably be Balboa or Walter Reed?
2) If the MTF cannot treat, get referral to providers in the local area
3) If local providers cannot treat, get referral to the closest non-local provider that can provide adequate care (probably not the place I want to go).

So I know somewhere in that chain of events that must happen, people are going to say they can provide the treatment - which is probably technically true, but I don't want someone who does this like once a year working on me. Does anyone have experience dealing with Tricare or MTF's to throw the "BS" flag?.

I can of course always just get the referral to a civilian provider of my choice, but I would like to keep the door open to getting paid to travel if possible...

FWIW I am in Las Vegas, so relatively close to UCSD, UCLA, Stanford, Mayo etc
10
For those in the 'watch and wait' status / Re: Diagnosed with VS , What to do
« Last post by Mark F. on October 26, 2025, 07:09:47 PM »
I fully understand your hesitation to do anything, and the decision is totally yours, but that being said, my opinion would be to go out of watch and wait and get something done.   It is growing and one thing for sure is that the bigger it gets, the more likely you are to develop additional symptoms that may or may not be permanent.  Personally, I went with the surgery.  I felt it was the right decision for me and I still do.  I am 5 months post op now and feel better than I have in years.  I'm not going to try and convince you one way or another,  just do your research and decide which option you are most comfortable with.  I wasn't comfortable with radiation, some people are.   Just remember that no matter which method you consider, the doctors are going to warn you of the possible worst case scenarios.  But the chances of you being in that category with a small tumor are very slim.  By the way, I am 56 so I am not a young person, but I am physically active.  If you do lean towards the surgery, being physically active is a huge advantage in your recovery. 
Pages: [1] 2 3 ... 10