Author Topic: What activities are no longer comfortable with after AN surgery?  (Read 3178 times)

MariettaJoker

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What activities are no longer comfortable with after AN surgery?
« on: December 30, 2021, 09:25:48 am »
I had AN surgery on 11/30/21 so I'm very much still in recovery mode. I've been walking 3-4 miles daily since I got home and driving after about 3 weeks has been no problem. I have not tried to ride my bike or do much else. I'm curious for those of you that have had 1 year+ recovery....are there certain activities that you can no longer do post AN surgery?

I don't scuba dive, but I'm told that's something I'd probably need to take off my bucket list. Anything else that I might expect could be a challenge for me?

Thanks for any feedback.
"If we couldn't laugh, we would all go insane" - Jimmy Buffett
Vestibular Schwannoma 2.3 x 2.5 cm. Right side.
Surgical approach was translabyrinthine on 11/30/21 at Emory Hospital in Atlanta, GA.
Total right side hearing lost and facial paralysis on right side
Phonak Audeo CROS-P hearing aids

mkvoregon

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #1 on: February 16, 2022, 05:45:35 pm »
Hi Marietta,

I had my translab 9/2020. I am 37 and am pretty active. I don't find road biking difficult from a balance perspective, but I'm not very comfortable on the road because I can't tell where the sound is coming from. I feel like I am constantly looking over my shoulder, which isn't very fun. I found mountain biking to be really hard, all the shaking and not being able to maintain a steady focus, made me nauseous. I'm sure if I asked my PT, they'd say with practice and small rides, I'd be able to work up to it. I've been able to cross county ski no problems, but haven't been back on my downhill skis. I'm more concerned about other riders and safety without being able to tell where sound is coming from. I had a "hearing impaired" safety vest made, which is pretty dorky looking, but will hopefully make me feel safer if I'm on the road or ski hill. I also think I have a much stronger fear of heights now than before surgery.

I'm planning a trip to Hawaii in August, so will try out snorkeling and see how deep I can comfortably go.

I'd say just take it easy and if you think you might have trouble, make sure you have someone with you and take the activity in a small dose. See how you feel, since it seems like we all recover differently.

I hope this helps!

Greece Lover

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #2 on: February 17, 2022, 10:34:57 am »
Hi.  I have retained hearing in my AN ear, so maybe my advice is not as helpful, but I've had little difficulty biking.  I maybe have to be slight more careful when looking behind or reaching down for my water Bottle.  I bike hundreds of miles each summer. 
I used to play a lot of racquetball, and that's something I haven't resumed.  I'm sure I could,d do it ,but all of that sprinting and quick turning of head/body I think would be difficult.

I'm definitely not going scuba diving, but I think snorkeling would be fine/great.

I visited a class of Physical Therapy students last November who were studying the vestibular system.  They, and the prof, were very insistent that I could still get better balance than I have by continuing vestibular exercises.  So, PT is something you could check out if you need help getting to the point you want.
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #3 on: February 17, 2022, 11:35:54 am »
I haven't ridden my bike, but I would be afraid to right now because I have had balance issues.  I am currently having vestibular therapy sessions which are helping my balance a lot, but I'm still not there yet.

I also have single-sided deafness, so I would not be able to distinguish where the sounds are coming from either.  I had not considered that in terms of riding my bike, but it is true -- that certainly would be an additional difficulty.  I'm in the process of getting a CROS hearing system, but that would not help with determining locality so it still would not help knowing where the sounds were coming from while riding a bike.  I may need to sell mine, sadly.
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

MariettaJoker

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #4 on: April 08, 2022, 03:56:47 am »
Thanks for all the feedback everyone! I've now ridden my bike with no issues and I'm back working on my post retirement handyman business. This involves getting on a 6' or 8' ladder to hang curtain rods, etc. and I've had no issues at all. I'm very pleased with my recovery to date. My only lingering issue is the ongoing right side facial paralysis. My facial nerve was damaged by the tumor (not by the surgery). I've got about another 90 days to see if I get any movement back...
"If we couldn't laugh, we would all go insane" - Jimmy Buffett
Vestibular Schwannoma 2.3 x 2.5 cm. Right side.
Surgical approach was translabyrinthine on 11/30/21 at Emory Hospital in Atlanta, GA.
Total right side hearing lost and facial paralysis on right side
Phonak Audeo CROS-P hearing aids

Greece Lover

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #5 on: April 08, 2022, 07:50:43 am »
good news! Keep up the good work and be careful on the ladders!
Vestibular Schwannoma 1.2 cm. Right side.
Middle fossa surgery at University of Iowa on May 9 2016.
Hearing saved.  Face is fine. Balance pretty darn good most days.
One year follow up MRI showed no tumor. 
Five year follow up showed no tumor, so I'm in the clear.

donjehle

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #6 on: April 08, 2022, 02:23:50 pm »
Your recovery sounds great, MariettaJoker!  I have a question for you though.  What happens after 90 days regarding your facial paralysis?  What are your options for dealing with that?
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

MariettaJoker

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Re: What activities are no longer comfortable with after AN surgery?
« Reply #7 on: March 25, 2024, 06:30:56 am »
Don, I very late posting my response here and sorry for that! I’ve had two facial reanimation surgeries since my original post and I’m doing much better. Still have obvious facial issues, but much better. If you go back and read the June 2023 newsletter patient story you can see my story and see photos of before and after.
"If we couldn't laugh, we would all go insane" - Jimmy Buffett
Vestibular Schwannoma 2.3 x 2.5 cm. Right side.
Surgical approach was translabyrinthine on 11/30/21 at Emory Hospital in Atlanta, GA.
Total right side hearing lost and facial paralysis on right side
Phonak Audeo CROS-P hearing aids