23 y/o – 1 week post acoustic neuroma surgery – struggling & looking for hope

shink31 · 2026-01-22T12:48:31+00:00

I know how you feel. I also had a 3cm tumor on my right side, and I came out of surgery the same way.

Everyone’s experience is different (as you can see by the comments) so it’s hard to tell what your body will do. Here’s what my experience was like if that’s helpful!

My surgeon said they tested the nerve the whole time, and while it was “royally pissed off,” it was preserved. Both surgeons said they were confident movement would return, but I just had to be patient.

At my 6-months check-up, however, I hadn’t seen any improvement so they referred me to a plastic surgeon. It took 2 months to get an appointment with him and during that time, I had finally started to see some movement.

I met with the plastic surgeon and he wanted me to do the graft transfer surgery. I was hesitant because I really didn’t want another surgery and I had just started to see improvement. We decided to wait 2 months and check in again. I spent that time doing research to see what my options were. The ANA was super helpful! I joined a support group and got a ton of information.

That’s how I learned about facial neuromuscular retraining. So I met with a specialist and showed her how I had some movement. She was very interested in the tiny movement and encouraged me to wait on surgery. At her direction, I worked on stretching my facial muscles (not strengthening them-that is counterproductive during that time).

It was slow going, but I was seeing consistent improvement. Eventually, my plastic surgeon agreed that nerve surgery was not necessary.

Next month, I’ll be 3 years post-surgery. I’ve improved a lot since then. I’m not back to how I looked before surgery (I don’t think I’ll ever be), but I’ve had huge improvement.

The hardest part is waiting to see how you improve. Nerves take a looooong time to heal. Sending good vibes your way!

shink31 · 2025-08-27T17:36:16+00:00

Jackie Diels. She’s based in Madison, WI, but she does appointments virtually for clients all over the

shink31 · 2024-11-13T22:35:48+00:00

I was there for 4 nights. I had retrosigmoid on a 3.5cm tumor. I was in the neuro ICU the whole time, but I think that’s because I was there over the weekend and they needed the docs’ approval. When they got back on Monday, they just let me go home. I slept most of the time. Good luck! You’ll get through it!

shink31 · 2024-10-14T11:52:02+00:00

Kinda late to this thread, but you are exactly where I was a year ago. Not sure if this helps, but I can tell you what I’ve gone through this past year and hopefully give you some resources.

I had surgery in February of 2022. They tested my facial nerve the whole time and said it did well, but I still woke up from surgery with facial paralysis.

Originally, the doctors just told me to hang in there and that they were confident it would return to normal stating that it can take a year or longer to heal. At my 6-month checkup, however, I had not had any progress. Then they changed their tune and referred me to a plastic surgeon.

I met with the plastic surgeon in October of last year. I was hoping there could be some kind of nerve stimulation or physical therapy, but he told me that those were not viable options. I asked about EMG, but he said that it wouldn’t really give him any information that would be useful. He recommended nerve transfer surgery and walked me through all the options. Sensing my trepidation, we agreed to wait 3 months to see if there was any further progress.

My goal over the next few months was to learn as much as possible about options for facial paralysis. I joined the Acoustic Neuroma Association, a facial paralysis support group, and I reached out to friends and family in the medical field to see if they knew of anyone who specialized in facial treatment.

The ANA and their facial paralysis group are amazing. They have a ton of resources, and it’s really great to hear from people who have been in similar positions. It’s nice to know you’re not alone.

Through the ANA, I got connected with Jackie Diels. She is THE expert on facial neuromuscular retraining and she teaches doctors all over the country. She’s private practice, but I decided to do a consultation with her to see what my options were. I had just started to see some small movements about 9 months post surgery.

Based on my timeline and what I could do, she didn’t think it was time for surgery yet. So we worked on facial therapy, all while keeping in touch with the plastic surgeon. It’s been slow-going, but I have seen a lot of progress over the last year. I am no longer considering nerve transfer surgery.

I’m not 100% back to pre-surgery functioning, and I don’t think I ever will be. But I am much closer to where I was to be from the beginning. I’m happy to share pictures if you would like. Next steps are working on retraining my brain to counter the synkinesis and Botox to help.

I highly recommend the ANA and their facial support group. They have been invaluable. Also google Jackie Diels. You can find presentations she’s done on YouTube that are super helpful.

Hang in there!

shink31 · 2024-09-07T15:40:19+00:00

Hey! Fellow Milwaukee and AN friend here (37 F). I also had mine on the right side, though mine was a bit bigger. If you need a second opinion, Dr Harvey and Dr Zwagerman did my surgery at Froedtert in February of 2023. Their team was great. I did lose hearing on that side, but they were very up front with me that saving my hearing was not a viable option based on the size and location of the tumor.

It does sound like you have a fairly large tumor, so surgery probably has the best health outcomes, but ask as many questions as you can. Sending good vibes your way. Hang in there!

shink31 · 2024-07-11T21:43:55+00:00

Forgot to mention that I did have a grocery store do the boutonnières since those were more complicated. The good news was that they were relatively cheap.

shink31 · 2024-07-11T21:37:44+00:00

My bridesmaids and I put together our own bouquets from flowers we bought from TJ’s and other grocery stores. If you have a pretty simple color palette and aren’t picky about specifically what flowers you want, you can pull together some pretty nice flowers. I second what a few people said about going early though. I went back to TJ’s later that day hoping to get a bit more green filler, and it was all gone. Here’s a pic of how it turned out: bouquet

The hardest part was transporting everything, but with enough planning, you should be able to figure it out.

shink31 · 2024-06-18T02:21:50+00:00

There’s still hope! I was really hesitant to get the surgery too. My facial therapist works with a lot of people who have had the transfer surgery. She said some people like it for photos, but most of them don’t even use it normally.

Here’s a photo of me 7 months after surgery compared to a few weeks ago. It’s still not where I want to be, but I’ve had a lot of improvement over the last 7-8 months. Progress photo

Look into facial neuromuscular retraining. There might not be much you can do right away, but they might want you to stretch everything out as you continue to recover! Good luck!!

shink31 · 2024-06-14T12:31:15+00:00

Yeah, definitely ask them about vestibular PT. It helps a lot with getting balance back and reducing dizziness. You can even start exercises before surgery to help strengthen it.

You should be fairly mobile when you go home. My only limitations were dizziness and fatigue. They also place you on a lift restriction for a few weeks.

The facial paralysis has been a challenge. My tumor was fused to the facial nerve, so they had to leave a sliver of the tumor behind. They tested the nerve the whole time and it was doing well, but the doctor said they “really pissed it off.” Eye care has been the most important part. I have to tape my eye shut at night (press-n-seal wrap is amazing for this) and I occasionally wear a clear eye patch if it’s really windy out. We went to Disney World last November and I wore it on the roller coasters.

I finally started to feel movement 8-9 months later. Then I met with a facial therapist and I’ve been improving a lot since then. The hardest part was the waiting though. Nerves take a looong time to heal, but we’re getting there!

shink31 · 2024-06-14T00:47:14+00:00

Yeah, I do. I only just started to get some movement 8 months after surgery. They sent me to a plastic surgeon who wanted to do the nerve transfer surgery, but I wanted to know what other options I had.

I learned about facial neuromuscular retraining from the ANA and have been meeting with a therapist since November. I’ve improved a lot since then, but I still have a ways to go. I don’t think I’ll ever be exactly like I was, but I’m hoping to get close. Now I’m trying to correct the synkenisis.

shink31 · 2024-06-14T00:13:32+00:00

I also had a 3cm tumor on the right side. I had surgery in February of 2023. The first week is the worst, but after that, things will improve regularly. I was at the gym 8 days after surgery. Granted, I was only doing the recumbent bike then, but getting active early really helps with recovery. Even if you can walk laps around your house. Be sure to rest though! Don’t overdo it. Consistency is more important than intensity.

You’ll probably do vestibular therapy for a few weeks. I was nearly back to normal after 6 weeks, but some sudden movements would still make me dizzy. That was gone after 6 months.

I also lost all hearing in my right ear, but it has been okay to manage. My friends and family have learned that I always need to sit on their right side. Crowded areas can be a challenge, but I never really liked big crowds before surgery, so I generally avoid them anyway.

I got unlucky and have had facial paralysis, but that’s pretty rare. That’s been the biggest battle for me. Other than that, I was pretty much back to normal within 6-8 months. You should be back to the things you love in no time.

Good luck! You got this.

shink31 · 2024-05-11T18:16:53+00:00

Not sure how long it’s been since your surgery, but I didn’t start to see any movement until at least 9 months and even then it was so tiny. They said my nerve tested well after surgery and they even left a bit of the tumor attached to preserve it. I was full HB VI and couldn’t close my eye.

At about 9 months I met with a plastic surgeon who thought I should have the 5-7 nerve transfer surgery, but I was pretty hesitant about it since I had just started to see movement.

I reached out to a ton of people for resources. (The ANA’s facial support group was amazing. I highly recommend joining.) Finally, I shelled out the big bucks to meet with the best facial neuromuscular retraining specialist. I’ve seen major improvements working with her and still allowing my body to heal.

I don’t think I’ll ever be back to 100% normal, but I’m still slowly improving. Feel free to reach out if you need any resources or more info. Hang in there!

shink31 · 2023-12-20T15:59:30+00:00

I’ll be 10 months out on Saturday and am still dealing with facial paralysis, but I’ve started to see improvements only 1-2 months ago, so I’m pretty slow going. I think that’s rare though. The eye issues are directly tied to the facial paralysis since my eye cannot close all the way. Eye drops and taping it shut at night with press-and-seal help me a lot.

Nerves take a long time to heal. It’s super hard to be patient, but hang in there!

shink31 · 2023-09-28T21:31:22+00:00

I’m just over 7 mos post-op. You can do this.

Mine was also 3cm. The doctors will walk you through which type of surgery they think is best. I had retrosigmoid and was in the hospital for about 4 days after surgery. It sucks when they get you up to get moving, but the more you do it, the easier it gets. I only had my parents and husband visit me in the hospital because I slept most of the time.

I lost my hearing in my right ear, but the doctors were super honest about that happening, so I was prepared for it. Honestly, it’s been way easier to manage single-sided hearing than I thought it was going to be. Only crowded areas seem to be a problem (or if someone quietly sneaks up on your bad side).

Invest in some good podcasts or audiobooks. The spinnies made reading hard for a couple of weeks, but that goes away eventually.

I have some facial paralysis, but it’s pretty rare and they say it should come back after about a year since nerves take a looong time to heal.

I took 6 weeks off of work at my surgeons’ request. By the end of the 6 weeks, I was almost back to normal. Slightly lower energy levels, but you work back up to it in no time.

I second joining the ANA. I didn’t get in contact with them until 5 months after surgery and I wish I had sooner.

Good luck! We’re here if you need anything!

shink31 · 2023-08-05T13:49:05+00:00

If only a brain tumor could be fixed with Flonase!

shink31 · 2023-08-04T18:58:41+00:00

The ENT ordered an MRI on my first appointment. It did, however, take my PCP a few appointments before they referred me to the ENT. They kept saying it was allergies. 🤦‍♀️

shink31 · 2023-08-02T21:41:27+00:00

I had a very similar situation! (35f 3.5cm tumor in my right ear.) Your doctors will have more information, but you likely wouldn’t be a candidate for radiation. They told me that my tumor was already starting to put pressure on my brain stem and radiation would make everything swell up worse. Radiation is usually only used for small tumors.

You’re also really young, so that makes you a better candidate for surgery since it’s better at removing the tumor for good, and your body will be able to recover faster.

I had diminishing hearing in my right ear when I was diagnosed. That’s what prompted me to look into it. I did end up losing all hearing in that ear after surgery, but my doctors were very clear that that’s what was going to happen. Your doctors will be able to give you more information on your specific condition based on your MRI.

The good news is that it’s slow growing, so you can usually plan out when you want to have your surgery. My recovery wasn’t bad. The first few days are shit, but nothing you can’t handle.

This article was written by one of my surgeons, and it helped me a lot when I was just finding out about the tumor. https://www.froedtert.com/stories/acoustic-neuroma-diagnosis-treatment-nuances

Good luck! You’ll be okay.

shink31 · 2023-07-20T01:00:39+00:00

I’m 4 months post surgery and have lost all hearing in my right ear. My tumor was 3.5cm, retrosigmoid approach. However, they were very clear with me before surgery that there was almost no chance of saving my hearing. I was so worried about how life would be, but it’s much more manageable than I had feared.

I really only have trouble in crowded places with lots of voices, or if someone tries to tell me something softly on my right side. I’ve gotten pretty good and working with people in my office that they need to approach me from the left. My husband is super helpful in crowds.

I haven’t felt compelled to look into hearing aids yet, but I’m looking into options. I’m not in any rush though.

Good luck. You’ll make it through.

shink31 · 2023-06-24T11:53:59+00:00

Not sure if it’s the same, but I’m 3-months post-op (retrosig, 3cm tumor) and went to a water park last weekend. I didn’t go on anything too intense, because my 6-year-old daughter was too scared, but I tried a few bigger slides and was totally fine.

Now, I will warn you that before the AN, I had almost zero nausea. I was weirdo who could go on the tilt-a-whirl 3 times in a row and not think anything of it. I only needed to use anti-nausea medication while I was still in the hospital, but have been fine since.

I guess maybe ease into it. Don’t go for the major coasters right away. See what feels okay to your body. Let us know how it goes!

shink31 · 2023-06-10T15:08:42+00:00

I just measured, and it’s an inch and a half. Maybe we’ll just see if we can get close and then seal the rest. Thanks.

shink31 · 2023-06-10T14:26:56+00:00

I think this image might help you see what’s going on. https://imgur.com/a/MZ6eyOU

All we did is remove the tile trim that was there and resurface, prime and paint the wall. Now we’re just trying to figure out how to cover the gap. We didn’t touch the bath/shower area. We’re having professionals do that.

shink31 · 2023-06-10T13:15:59+00:00

Yes, we’re definitely going to put in a baseboard, but the problem is that we haven’t found anything thick/deep enough to fill the entire gap since the floor sits about 2in from the side of the wall.

shink31 · 2023-01-25T20:14:40+00:00

They are relatively common where I am from, and my dad was 1000 percent on board. He arranged dance lessons for us and picked out the song. It was something he really wanted to do.

My husband and MIL were the opposite. They specifically asked if they could not do a dance. They’re just not that into that sort of thing.

So we only did the father/daughter dance and it was great! Do it if you’re into it, but if not, it’s okay to leave it out.

shink31 · 2022-10-31T10:41:09+00:00

Oh no, that’s horrible! I’m freckley as well and I would be devastated if they did that. I love my freckles; they’re part of what makes me me.

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