u/Expensive_Cow1875

Having TransLab tomorrow and I’m thankful and grateful to be moving forward tumor free. I have not slept much the past few days due to what I would assume is a bit of lingering subconscious anxiety, but I feel I am in good hands and I’m excited to report back post procedure. The internet can be a dark place, but this thread and the few of us that have received this diagnoses, has been uplifting and helpful to me in many ways. Sending love to everyone affected by these unexpected visitors.

Hi all, I’m just sharing in case this helps someone now or in the future. I flew into Minnesota this week and was lucky to have a hearing test at Mayo, followed by a meeting with the two of the surgeons who remove acoustic neuromas on their team.

My tumor is small - around 5 mm by 7 mm. However, it’s either growing from, or growing into my cochlea. I knew this was odd, but was informed that only 1 - 2 percent of acoustic neuromas present this way. Because of it’s location, my tumor is presenting and causing significant symptoms.

I have only had one hearing test since my tumor was found in February of 2025, and even then I was never walked through the results of it. I knew it was significant, but I had also never done a word recognition test. At Mayo, the audiologist walked me through all of my symptoms, the hearing test, and my results. This may be standard procedure, but it’s not an experience I had initially.

I was shocked to learn that I was not hearing anything out of my left ear and my word recognition was zero. I’m an extremely social 29 year old and an attorney, and I have been frustrated with myself and my brain and my body as I’ve tried to do normal things for the past two years. This information was extremely validating, and I feel in a much better position to advocate for myself.

Finally, I talked with them about my symptoms, which have included significant dizziness, fatigue, tinnitus, and ear fullness, and never once were any of my feelings invalidated. They explained that the goal of a surgery is to remove the tumor, and that they could not guarantee which symptoms would be relieved or remain post removal.

I will note that all of their opinions and observations were the same as my doctor, who will be removing the tumor here in Colorado.

All of this to say, information is your friend. Even with this Reddit thread, which has been extremely helpful, there have been some times in which I’ve been frustrated or confused. Advocating for yourself is extremely hard, and I say that as someone who does it for others a living. I know not everyone has the resources for a second opinion, which is why I think this thread is so helpful. However, if you can, I would highly suggest a second opinion, or even just expanding your care team if at all possible and you feel it’s necessary.

As always, sending love and healing to everyone who has found themselves on a path they were not ever anticipating.

hi! i am trying to determine how long, realistically, my parents will need to be in town, and also on that same note, how long I may be in the hospital post operation? i am wondering if a week or 10 days ish would be enough?

Fo context, i am a 29 yr old female, fit, and am hoping to be as organized as possible before surgery. v independent to begin with. i am having translab the first week of October at CU Boulder Anschutz.

as always, i am sending love and good vibes and prayers to everyone on this page.

hi! if there was anything that made your recovery better I would like to know about it!

EDIT: If you are a woman, did you pull your hair up after surgery? was washing it difficult?

Hi all, I’m an attorney in the Denver area and I’m looking to pick up a second gig as, like many others, my student loan situation is changing. I am looking for something I can do primarily remotely and in the evenings. If you are looking for a personal assistant, please feel free to DM me.

Hi all, I’m an attorney in the Denver area and I’m looking to pick up a second gig as, like many others, my student loan situation is changing. I am looking for something I can do primarily remotely and in the evenings. If you are looking for a house manager or personal assistant, please feel free to DM me.

Hi all- i made the decision to schedule surgery. i am already profoundly deaf and will have TransLab to remove my intracochlear AN in October. I know people come on this app to solve problems and get information and support, but I’m asking people to share hopecore on this thread instead with positive experiences and outcomes.

Sending so much love to all those who are struggling with an AN or other brain tumor.

hi! i am having my left inner ear removed. has anyone ever applied for a hearing dog with ssd? if so, what organization did you go through and what was your experience?

hi all- this is such a silly question - but my immediately family is a Disney family and that is exclusively where we vacation. if you liked a theme park, did you still like theme parks after surgery? how did you do on rides after the surgery? We’re not going again until i get my tumor removed and have plenty of time to heal, but i worry that my a will take the joy out of those family trips.

Hi all, I saw my ENT/surgeon today and I told him that I have been dizzy, have been having earaches, and increased headaches on top of tinnitus and deafness (my hearing in my left ear is completely gone). He essentially shrugged it off and said those are unlikely to be caused my tumor (intracochlear, hence the complete deafness despite its small size). I am working on getting second opinions from Mayo and USD as the only option I’ve been given moving forward is translab. Beyond surgery, there’s not been a single resource or referral or prescription offered to me regarding any of my symptoms. I told him I was incredibly anxious once as this is affecting my day to day significantly and he basically said “okay” and moved on without acknowledging. I am a lawyer and very hesitant to be a ”difficult client“ but I am confused how the option is surgery or suffer.

edit: i have been seeing him for 18 months now

Looking for a dietician to formulate a caloric intake plan for weight loss. I have never tracked calories/macros, I’m a bit overwhelmed, and I’m hoping to find someone to break down the numbers for me. I am not at a place to devote a lot of time to such calculations and information right now. I would prefer not to use an app as I have some other health issues that I want to take into consideration. Thanks in advance!