I had a similar rough patch a few months after my own head surgery, especially the random breathlessness and chest tingling. It freaked me out at first because every test came back fine, which just made things more confusing. For me, it seemed like the nerves just needed time to settle and I noticed that stress or even small physical activity sometimes made the symptoms show up more. It really did help just talking with others who’d been through something similar because it’s not exactly stuff your doctor always warns you about. When my breathing felt off, I started looking into ways to strengthen my breathing and calm my nerves at the same time. I found it useful to mix gentle breathing exercises into my daily routine. Tips and devices focused on respiratory health can make a difference. I stumbled across something about respiratory wellbeing at https://omhale.com/ if you're interested in more on that.

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.

That’s not normal. Could be nerve irritation or something like scalp dysesthesia. Ask your doctor about seeing a neurologist.

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
 

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