Recent Posts

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91
Hearing Issues / Re: Tinnitus Suddenly Worse
« Last post by greenamw on June 25, 2025, 06:32:37 am »
Jordy, sudden worsening tinnitus with dizziness after AN surgery needs a checkup fast. It could be inner ear issues, nerve irritation, or even tumor regrowth. See your ENT or neurologist soon.
92
Inquiries / Re: How to reach doctors' offices
« Last post by greenamw on June 25, 2025, 06:24:30 am »
This slow response is common at big centers like UCSF and Stanford. The best way is to call first thing when the clinic opens and be clear and brief. If your daughter has a nurse navigator or social worker, try contacting them directly
93
AN Issues / Re: Scalp burning after mri
« Last post by greenamw on June 25, 2025, 06:14:01 am »
That’s not normal. Could be nerve irritation or something like scalp dysesthesia. Ask your doctor about seeing a neurologist.
94
Radiation / Radiosurgery / Re: My AN Story 2015 Sydney to Stanford CK
« Last post by SP on June 25, 2025, 02:49:19 am »
*** Latest update at (almost) 10 YEARS post CK***

My results from my MRI for 2025 (last one was in 2022), the good news is I can now go 5 years till the next one - that's a win!

There has been further reduction in tumor size measuring 2.1 x 2.0cm compared to my 2022 results (2.3 x 2.2cm).

Hearing:  Compared to previous assessment from 2022, further hearing loss has progressed. I'd like to find a suitable hearing aid that may help. I'm on a research mission to find one.
For some reason the newer models I was shown were bulkier than my current one and didn't really improve things much, then I was told I would need to wear one on both sides, which also didn't not improve things by much. Anyhow most days I'm working from home, so it doesn't affect me much, but when I'm out & about I'd like to be able to hear better from the left.

Overall, I am going well! Yoga & Pilates are my go-to for stress reduction :)


wishing you all wellness on the healing path,

Stella
95
AN Issues / Re: Hardware needs removed after AN removal
« Last post by Director on June 23, 2025, 01:23:19 pm »

Dear Marcirecovery,

Thanks for your post. Occasionally patients may experience infections, allergic reactions, head pain or headaches from titanium mesh or plates used in craniotomies and in some situations, the plate or mesh may need to be repaired or removed. This can be done as an outpatient surgical procedure. Please reach out to Melanie at the ANA and she can connect you with others that experienced a similar situation, melanie@anausa.org.

Thanks,
The ANA Team
 
96
Facial Issues / Do I have hope after 6 and a half months?
« Last post by WALEED KHALID on June 18, 2025, 04:07:15 am »
‏Hello.. I had an auditory nerve tumor operation with a size  5 cm of 6 and a half months, and until now my left face does not move, although before the operation, my face was normal, and now when I try to move, I feel like something is under my skin, as well as the most famous sometimes I tingling, and I also feel electrotherapy when it is put on my face, are there people who have passed like me for this period and did not feel the movement, and does the movement begin to return gradually in the future? Do I have hope after 6 and a half months?
97
AN Issues / Hardware needs removed after AN removal
« Last post by Marcirecovery on June 17, 2025, 02:33:08 pm »
Hi fellow AN friends.  I am reaching out to see if anyone has had to have the titanium plate and screws removed after a middle cranial fossa AN removal.  My AN was removed on Sept 3, 2024 and I have been on LTD since due to dizziness, lack of balance, issues with eyesight, pressure like a balloon blowing up on the surgery side and strange zinging/electric feelings in my head.  These are present daily from nearly the moment I wake up.  At my scan yesterday they informed me the screws are backing out and I need to have them removed.  They think this may be the cause of my issues.  Has anyone had anything like this?  Please any input for something similar would be helpful.  I'm disparate to find help and get better.  Thank you!
98
Inquiries / How to reach doctors' offices
« Last post by nancyrhine on June 17, 2025, 01:33:20 pm »
My adult daughter is newly diagnosed patient with a 2 cm AN. She is working FT, has two young kids and an undependable husband. She is exhausted from that plus of course from the tumor. I am trying to do some research and calls for her to line up appointments as she determines which treatment and treatment team she will have.

She is leaning towards either UCSF with Dr Theo or Stanford with Dr Chang.

My question is - how on earth do you get through to their offices with questions? I realize they have MyChart and MyHealth but she has emailed several times with no answers.

I have tried to call in to both clinics and can only get the main numbers and then am on hold for a long time and then have to just leave messages anyway. With poor response rate.

Is this just the way it is nowadays with health care?

Has anyone here has positive luck with reaching Dr Theo and Dr Chang's offices - have you felt they were responsive?

Do I just have to be more patient? It's challenging when we are both anxious about what the future holds...

Thank you - Nancy
99
For those in the 'watch and wait' status / Re: New Person needs advice
« Last post by stevehernes on June 14, 2025, 03:23:15 pm »
Just checking in — how are your tests going now? I’ve been thinking about you and hoping everything is moving in a positive direction. Medical stuff can be really stressful, so I totally get how important it is to feel like you’re in good hands. I actually discovered LabCorp https://labcorp.pissedconsumer.com/customer-service.html recently, and honestly, it’s been a game changer for me. From scheduling to results, everything has been smooth and professional. So from now on, I’m planning to do all my lab work through them — it just feels like one less thing to worry about.
100
Pre-Treatment Options / Re: New Guy
« Last post by stevehernes on June 14, 2025, 03:22:04 pm »
How are you doing? Feeling any better these days? I recently came across some reviews for ModivCare https://modivcare.pissedconsumer.com/customer-service.html and I’m thinking about trying their clinic soon. If any of you have had experience with them, please share your thoughts. It would be great to hear honest feedback before I make an appointment. Hoping this could really help
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